Osteitis Pubis [Archive] - Injury Update Forum

Peggy

02-12-2005, 12:23 PM

Hi, just wanting to know if anyone can shed some light for me.....4 mths after giving birth to my 2nd child I was diagnosed with Osteitis Pubis (footballers disease). It cripples me in winter & I cope with a lesser amt of pain through summer. I was told it would settle after a year. But now 2yrs on I've decided enough was enough & went to see an orthapeadic surgeon. He recommended surgery "arthrodesis of the pubic symphosis, internal fixation with bone graft + o.p.i.". It sounds scary & believe me it is. The diagnosis isn't great, he expects it will become more chronic & he'll be sharpening the knife for me in 6mths time! Has anyone tried alternative treatments? any success stories in treating this condition? Any great websites you can recommend to me? Would appreciate any advice anyone can offer me....

SPK

02-12-2005, 07:27 PM

Peggy

02-12-2005, 08:59 PM

Have you tried Physio? My mate (Professional Soccer player) has OSP and he reckons Physio has helped it heaps. The only problem is, if you slacken off then the pain comes back again so you have to be really dilligent with it.
Yes I tried physio with no success. Have been told that it wouldn't help, as that's only useful when the muscles are weakened which isn't the case for me. My problem is low grade marrow oedema - my bones are producing inflammation following a major stress on that region; that stress being childbirth....and yes that's about as major a stress as you can get!!!

hmunafo

18-01-2006, 08:56 AM

I too have been diagnosed osteitis pubis ever since giving birth 2 years ago. I have been passed from doctor to doctor with no luck. I've seen orthodaedic surgeons, rhuematoligists, acupuncturists, and even a hip and pelvic reconstructionist. No one knows what to do with me. I had a needle aspiration of the symphsis pubis 3 months ago to rule out a bone infection which landed me in the hospital for a week unable to walk or move my legs. I've been taking prednisone for the past 3 months to mask the pain but that too has it's side effects and i's not something I want to be on long-term. I am unable to do any activity (not even leisurly walking) without pain. I even got pain after having a body massage this past weekend. I've been searching for others who also suffer from this condition and would love to talk more to anyone who knows more about this condition and why it won't heal on it's own with rest.

Ireland

18-01-2006, 12:29 PM

It might sound ironic, but it's great to find some fellow sufferers! I have recently been diagnosed as having Osteitis Pubis, Stage III or IV...

My second child was born 2 years ago, he was 10lbs 8ozs and posterior. I needed physio, including laser treatment for inflammation, while still in the maternity hospital. Then spent the next 20 months complaining of the pain to my doctor (in Ireland) and being told it was usual... only got diagnosed after banging my head last September and knocking my symphysis pubis joint out so badly that everything became painful and I went to a different doctor.

I came across a website http://www.tucsontennis.net/op_history.html which is one man's 'symphyseal arthrodesis' post-operative journal ... worth reading before agreeing to surgery. He chose this surgery over 'wedge resection' after reading an article 'Osteitis Pubis and Instability of the Pubic Symphysis; When Nonoperative Measures Fail' and speaking to 2 of it's authors in Wales, UK

Keep in touch and hopefully we can help each other...

Unregistered

19-01-2006, 06:03 AM

Thanks for your reply. I agree. It is good see I'm not the only one suffering:) Sometimes I think I'm going out of my mind and that the doctors are looking at me like I'm a hypocondriac. It's funny, I too found that site you mentioned and visited it yesterday. Even more ironic, the doctor that the journal references (Dr Joel Matta) is the hip and pelvic reconstructionist I visited a few months ago in Los Angeles and he informed me of the surgery. I don't feel ready to move to that level yet. I'm frustrated to have to be taking prednisone and know it's not good for me but the surgery just seems so out there. And the recovery seems impossible since I work full-time and have a 2 year old. FYI...my acupunctuist (who studied Chinese medicine) is researching this for me further and is certain that there has to be a treatment for this out there. I'll keep you posted if I here anything.

Paulie

19-01-2006, 04:41 PM

I have been in pain for over 15 months. Saw numerous amounts of doctors, surgeons, who thought I had appendicitis, hernia, kidney stones. Had ct scans,x rays. stork tests, mri, ultrasounds and nothing showed. Hadnt had sex for over a year because of pain.
A few of my soccer friends who had osteitis pubis saw a bloke in Mt Waverly , Victoria. After one to three visits and a good rehab program they were back on the soccer fields within weeks.
I saw him for the first time last week, and a week later the pain has dropped dramatically. This bloke also treats afl players etc etc
his contacts are at www.miritismassage.com

vitt

22-01-2006, 08:17 PM

hi everyone

i have been suffering from adductor tendinopathy/osteitis pubis for almost a year, I am in italy now after couldnt get any cure in australia - except surgery - and I am currently getting treated, results are coming but slow.

I have found that the following therapies work:

Tecar - only available in perth for now
Proloteraphy - just search on the net for osteitis pubis and prolotherapy, http://www.caringmedical.com/sports_injury/pubic_symphysis_pain.asp
there is MICHAEL B. OEI MDTel: 02 99692198 or dhillon@prolotherapy.com.au
also a good myofacial massage person could help.

this is all I can think of for now, have a try, let me know , vitt

vitt

27-01-2006, 12:46 AM

hey peggy any improvements? I truly reccomend you try the TECAR/Indiba treatment machine, in only 10 sessions my adductor tendinopathy/osteitis pubis has improved by 40% already....
I would fly to perth if I was you, I can give you the name of the place that has the machine. I am getting treated in italy, I hope someone in sydney will also get it soon,surgery is way to scary...try it

Ireland

31-01-2006, 09:16 PM

Regarding suggestions above re prolotherapy, Bob (of Bob's Osteitive Pubis Surgery journal that I mentioned before) says this is extremely painful and does NOT recommend this for OP.

I've just come across an article from Finland entitled "Successful Treatment of Osteitis Pubis by Using Totally Extraperitoneal Endoscopic Technique" which is a much less invasive surgery. This was performed on 5 elite level male athletes - I don't know what stage their OP was at but their operations were successful. Does anyone out there know any more about this surgery? The fact that it is much less invasive sounds 'appealing' as less recovery time and back to normal with kids etc... who has a year to take out of their life to recover from some of the other surgeries!?!

Keep posting... and take care!

vitt

31-01-2006, 11:38 PM

hey ireland, can't seem to find much about that surgery - sounds interesting tho.

I havent tried proloteraphy personally, but heard lot of good things about it....I think that I may have a different prob from your tho, I suffer of adductors tendinopathy quite chronic tho, had x-ray and mri and nothing else showed...how did you get your OP diagnosed? do you have pain on the pubic bone only or on the sides where the tendons attach?

I getting great results with this TECAR/Indiba treatment, I think it's worth try it before agreeing to surgery...let me nkow

Ireland

02-02-2006, 09:35 PM

Initially I was diagnosed with symphysis pubis dysfunction and was attending a physiotherapist. I got so bad at one point that I was wheeled out from a session in a wheelchair so was sent for x-ray.

I got diagnosed from that one simple x-ray, no flamingo pose or anything exotic... taken with me lying on my back ankles slightly apart and my toes turned in together. It's one of the things that worries me about my diagnosis - just how bad is my condition...? How come others have had to undergo lots of testing and probing for a diagnosis and yet even the radiographer could see at a glance that I had osteitis oubis! I have my x-ray at the moment and even I (with no medical background) can see that the symphysis pubis joint and the bones on either side don't look 'right'! The physio described the joint as 'extremely worn out'!?!

I also had adductors tendinopathy (my women's health physio calls it adductor tendinitis) which I had quite successfully treated with physio, having sessions up to three times per week over some months. The physio would release the muscles and do ultrasound treatment. I also had about 8 SCENAR treatments which gave great relief.

SCENAR stands for Self-Controlled Energo Neuro Adaptive Regulator. Two websites about this treatment are: www.scenartherapyireland.com or www.scenartech.com

I had pain on the pubic bone which at times seared up through my body as if I'd been kicked... also particularly on the left side where the tendons attach. I also have some pain at the back inside of my left thigh that I still haven't found the cause of...! Overall my inflammation is greatly reduced and my pain levels have come down - from being excruciating to just unbearable! My main issue now is constant grating in the joint and consequent 'lifestyle issues', i.e. not being able to go anywhere or do anything without increasing the pain!

Do you think TECAR/Indiba treatment would suit my symptoms? Can you recommend any website about it as I don't know anything about it and I think that nearly anything is worth a try before agreeing to surgery...!

vitt

03-02-2006, 10:33 PM

hey ireland

glad to hear from you. I had the same x-ray as yours too and nothing came up. I guess it's positive that the pain as decreased already for you, a hope not to do the surgery, these are links to the sites about TECAR/Indiba, are you in the uk? think there is someone in london. I can't say whether it'll work cos I seem to suffer of adductor tendinitis, but it's meant to help joints too. Also try a net search in your area.

they are in london i think: http://www.naturaltherapycenter.com/Indiba%20Hyperthermia/

http://www.indiba.es/eng/medicina/metodo.htm
www.bioresonance.net.au/SportsMedicine.pdf
http://www.unibell.it/tecar/

there is other stuff on the net too but it's either in spanish or italian - where the machine is been invented.

If not it may be worth tracking down thatdanish newspaper - even calling them and find out the name of the doct about that surgery, maybe even fly there or something. but try to find the indiba or give them a call in london. hope it helps.vitt

Ireland

10-02-2006, 12:46 PM

Peggy & hmunafo,

As all 3 of us have Osteitis Pubis and 2 year-olds I was wondering if we could swop info on anything that's helped (or not)... I notice neither of you are posting on this site anymore - is there any other site more suitable or useful?

I have an appointment with a Chronic Pain Specialist tomorrow and hope I'll be offered something beneficial!?! Next week I've an appointment with another Orthopaedic Surgeon - who specialises in the pelvis... in the meantime I'm trawling through the net to find as much info first.

Thanks for the info Vitt - I'm not in the UK... as the username suggests I'm next door in... IRELAND!

blindside

08-03-2006, 06:07 AM

yeh it sux. i had it for 18 months, while playing football!! had cortisone injections every fortnight. plenty of physio did shit all for it. i rested as much as could, knocked back sex from my GF, who is now my wife, just to help it get better!!! the best thing i found for it was wearing the thermoskin pants/shorts. the pain almost went straight away. i could play and train in peace wearing these things.
BSIDE

Ireland

24-03-2006, 05:19 AM

Good to have someone posting on this bulletin board again... it seemed to have totally dried up!:( At the moment I'm trying acupuncture and traditional Chinese medicine... with some benefit to date... Here's hoping for a result without surgery...

Keep posting and a belated Happy St. Patrick's Day from Ireland!

Peggy

31-03-2006, 10:58 PM

Hi all, thank you for the helpful discussion! When I 1st wrote I was constantly checking for any msgs & to my dismay NONE....I felt that I was the only one in this crisis! When Luz sent me a msg I checked the websight & was relieved! Since 1st writing I've been to see a fabulous physio! On examining me she noticed I still had the postnatal tummy, the muscles hadn't come together after having my son. I had no core strength, the muscles were shot. So we worked on strenthening my core stability in the hope that it might make a difference for me! & YES it has! My pain has reduced...I'm now moving onto a physio who specialises in Pilates to further work with me on the strengthening. I've also had a cortisone injection into the pubic symphosis (under cat scat supervision), excruciating & not much help...but you know it was worth the try. I just hope I haven't left this run too late. I already have the cystic bone changes....which most opinions are that it isn't reversible without surgery. Luz on first onset, I was sent for an xray & I too was diagnosed immediately...no doubt about it! Sadly each time since it's just gotten progressively worse. From mild to moderate. I have changed the way I go about things, getting in & out of bed, into the car....I try to reduce my walking as much as possible! I have a rest in the afternoon with my feet up and unfortunatley gained weight in the process...oh well! The worse part is that I'm so FRUSTRATED...I want to play chasey with the kids etc.etc. Walk my daughter to kinda. I am hopping in pain to chase my son when he takes off! The telling time for me....is April when the cold weather sets in and I'm taking my maximum daily intake of Nurofen to take the edge off. Yesterday was a tough day for me when I was having stabbing pains in my pelvis warning me that it could cease up! April is when I'm taking fairy steps on my toes to get around. I hope I can have positive things to mention on my next msg....let's see!
Pat

Peggy

31-03-2006, 11:04 PM

Oh....and I tried a pelvic brace which I felt aggravated the OP. I find that I can longer wear jeans...nothing that is restrictive. Some days I can only wear boxers even. Whatever it takes to reduce the pain..... Has anyone out there found a sport that doesn't aggravate their OP? I need to do something physical....

Ireland

03-04-2006, 07:39 PM

:)
Peggy/Pat
It was sooooooo good to check the site and have a message back from you... do feel free to email me directly as well...!
I've felt so alone with this FRUSTRATING condition... my patience is wearing out, never mind my husband's!!! So good to hear that something's working for you! I'm having some success with acupuncture and herbal pills from a Traditional Chinese Health practitioner - definitely helps me to deal with the pain a bit better.
I had 'flamingo view' x-rays (that's standing on one leg at a time) and they showed "some relative movement at the symphysis"... I could see it on the x-ray from across the room and I can feel it constantly, which is the worst part for me! I feel like I'm constantly trying to keep my body together, which is really wearing and tiring both physically and emotionally!
Here in Ireland it's springtime and with summer and warm weather (as much of it as we get in Ireland), it's something I can look forward to. But the practical day to day living issues with two young kinds are enough to drive me mad, even on the good days... and many of these will be worse in summer when we all tend to spend more times outdoors... I just can't keep up with my son and therefore can't go anywhere alone with him!
Regarding exercise and weight loss ... I haven't come up with any exercise, I need two crutches to walk any distances, climb the stairs, etc. But miraculously I have been loosing weight and I've always tended to be overweight. Initially I think that it was just from pain and stress, but I'm now sticking to a lower carbohydrate intake and it's working. Nothing mad like Atkins, just balanced meals with smaller portion of rice, pasta, etc. I'm just realistic that I move a lot less and a lot less slowly than before and therefore burn fewer calories. And if I feel like treating myself, I try to make it something non-edible!
Best of luck with the physio... hope it keeps working for you.
I'll post again soon. Take care of yourself!
Luz

Peggy

05-04-2006, 01:31 PM

Luz,

So much of what you say is totally what I'm feeling. My husbands patience is also wearing very thin....but then hey it's not that I want to go through this either. Sadly it was a side effect of having children.
You'll have to let me know what pain-killers you take...Chinese Medicine??? Winter is now kicking in here & I'm going to need something in the mths to come - I'm already feeling it. It's so much more severe in the colder mths. I'm concerned that Nurofen isn't safe to take long-term.
I started with the new physio this week and she's giving me a more intensive program..which believe me I'm feeling (Pain that is)....can't give up though. She also said to me that my condition has gone on untreated for so long that my pubic bone is basically arthritic. That usually a person gets arthritis with age...slow moving. With me it's come on all of a sudden & something I'll always have. I always thought that....although no-one's ever said it...they made it sound like a short-term condition. Not something I wanted to hear I can tell you.
But you know, there are worse things in life. It is debilitating at times, but like my husband said you can whinge & moan about it, or you can get on with it & enjoy what you have. I'm doing my best not to focus on the negative side all the time, cause I get depressed & lose my patience with the kids. That is easier said than done, but gotta try!
Take care,
Pat

Paulie

07-04-2006, 06:52 PM

Got to agree with your husband. I had CT scans, Ultrasounds, X - rays, MRI's and nothing showed. I even had doctors say I was making up this pain. This obviously took a toll on me and I feel in depression and suffered a DVT & PE in my left leg. My hair thinned dramatically that I had to shave it off. I am only 23 and been thru it all. Dec 2005 I met a Physio who actually diagnosed me with Pubis, I have been doing physio for 3.5 months and I am 90% there. Mentally I am scarred, but hopefully with time I can move on.
What I am trying to say is, do your best to overcome it, but if you cant remember there are people out there with bigger problems.

Peggy

07-04-2006, 08:02 PM

Geez Paulie you too have gone through too much at your age. Sounds like you've found a good physio though. In saying that you're 90% there, do you mean pain-free wise?

As frustrating as it must have been not knowing what it was, that may have been a good thing. If you had the degenerative bone changes they would have showed in some scan....with the xrays being clear, it probably means that it is curable & nothing permanent. There's a positive for ya!

Take care, Pat

Paulie

09-04-2006, 09:41 AM

Well tomorrow I am seeing my physio and starting a running program. I guess this maybe the final puzzle, do or die. I only feel minor pinching in my lower abs compared to really bad stabbing pains. I didnt have sex for one year because of the pain at least these days I only get it sometimes. Keep you updated.

Peggy

10-04-2006, 06:41 PM

Yes I too found that the pain doesn't do wonders for our sex-life. My problem is that my husband finds it difficult to accept in the heat of the moment....he thinks it's an excuse! He is understanding most times....but there are moments when he gets frustrated with it...just as I do!!!

Peggy

17-04-2006, 03:32 PM

Luz, it's Pat here (Peggie),
Haven't heard from you in a while....still interested in that Chinese medicine. Is it something specially made up for you? or is it over the counter in tablet form??? Still interested as the cold weather is setting in now.

The weather on your end of the continent is warming up....how are you feeling? Better I hope! Oh well, till you next write....Pat

vitt

18-04-2006, 04:09 AM

hey everyone

I have just come accross something that it maight be useful for osteitis pubis, here the link:

http://www.weipatch.com/seereosteoarthritis.html

I read about an article on the net from a sport person sayin that they work, kind of expensive but you know maybe worth it, maybe email them

vitt

24-04-2006, 01:50 AM

hey guys

this the review for these patches

http://www.transitiontimes.com/viewstory.cfm?ID=1887

I am going to try them for the tendonitis, you never know, take care v

vitt

26-04-2006, 11:52 PM

Hey guys

I am just wondering…is osteitis pubis a form of arthritis at the pubis right?!

Someone suggested trying magneto therapy, as they have had some great results in managing pain of joint disease.

I guess the best way of doing it will be going to an hospital/centre were they have the machine…I had a look on the net and came across this little one here, also with some good promises, what do you people reckon. I guess managing the pain would be good enough to gain some mobility and freedom,

http://www.magnetcure.com

I see that nobody replayed to my previous message…you all ok and over the problem?

Keep in touch vittoria

Liz

28-04-2006, 06:31 AM

Hi Peggy,
I just found this site and wished I had found it a year ago. I was diagnosed with Osteitis Pubis 6 years ago! It was really rough as you know. At the end, I had to use a Handicapped Parking Permit as I only had about 5 minutes of walking and then PAIN! Last July a really great Orthopedic Surgeon saved my sanity. I had a steel plate put in to stabilize the pubic joint and what a difference in my life. It was pretty horrid and has been a long drawn out recovery but I am now able to shop, and go to work. I am taking short walks during my lunch hour and I feel like a new person. I haven't been able to do any abdominal workouts yet as the muscles are still sore but it's a small price to pay. It is certainly an option you should check out. Good luck.

Liz

28-04-2006, 06:39 AM

Just another quick word.. watch out for the physio. I was doing physio as well as a workout program specially developed for my condition and according to my surgeon. it was the worst thing I could have done. Looking back, I realized that the pain just kept getting worse when I was doing that. To cure the condition, you have to keep the joint still and you can't do that unless you don't move it. ANY form of movement goes through the muscles in the pelvis so you really are between a rock and a hard place. My physiotherapist kep telling me I had to strengthen the muscles around the pelvis. WRONG! I feel so bad for you all , I know how really bad that pain is.

Peggy

28-04-2006, 11:09 AM

Hi Liz,
Yes I'm going through physio at the moment. But I'm actually feeling better when I do it. The pain almost instantly settles when I do my exercises. When it is at it's worst I do have to relax & take it easy. So did you go untreated for a long time? Is that why your condition got so severe? Like I see that surgery as the absoloute last option available to me. It's such aggressive surgery to undertake & with 2 children not yet in school, it just seems like an unlikely option for me.

Peggy

28-04-2006, 11:11 AM

Vitt, yes Osteitis Pubis can develop into an arthritic condition...yes that means for me that I have arthritis at only 33. I have a magnetic underlay on my bed & I can't say that I've noticed a difference...but like everything else, it was worth a try!

vitt

28-04-2006, 05:04 PM

hey liz

how was your osteitis pubis diagnosed? by x-ray? the reason I am asking is because I have done all the test and everything looks alright altho I seem to have some pain on the pubic bone but most of all there is inflammation at the sides/groin running down the legs, so I seem to mainly suffer from an inflammation type pain, is that what you felt too?

some people have diangosed me with adductor tendinopathy and other with osteits?! just want to compare your symptoms...thnaks

Liz

28-04-2006, 10:01 PM

Hi Peggy
My condition was actually diagnosed pretty quickly as I hav a erally good doctor who is a great diagnostician. However, you're right , the operation was definitley left as a last resort. I tried injections ( ouch) physio ( worse), wore a pelvic girdle for a bit ( ridiculously ineffectual ) and pain killers and medication I even used Celebrex for a short time but that was way too frightening for me so I stopped. I just kept getting worse. I was also gaing a lot of weight as I couldn't do any form of physical activity without medicating like crazy afterwards. I do know that with two children, the operation and recovery period does sound daunting but if it truly is not going to get better, then look into it. FOr most people the osteitis does go away. By the way, do you have a clicking noise in your pelvic joint as well as the pain?

vitt

28-04-2006, 10:06 PM

hey liz

I do feel some clicking noise but I am pretty sure that's coming from the hips, especcially when I liff one of the legs a little to put the trousers on....?! but dont seem to have noise coming direclty from the middle of the pubic bone...thanks

Liz

28-04-2006, 10:33 PM

Hi Vitt;
I was diagnosed through a few different tests..x-ray, and bone scan. However, my doctor could tell by rotaing my legs and pelvis and I guess the screaming when he did certain things to my legs. ( ok,,didn't scream but I let him know it hurt ) I had pain mostly in the right side of the joint but also in the groin and down my legs.

vitt

29-04-2006, 12:53 AM

thanks hey

I am really quite confused here, cos I had an x-ray and came out ok, it's more in the groins for me, basically the line that an underwear would follow and it feels like an inflammation that gets heaps worst when I walk around...so I dont walk much. there some pain on the pubic area but mainly when gets pressed...maybe I should go and see another doctor but it's so hard to get the right diagnosy here....

did you have problems with your adductors too....like pain when trying to open your legs?

thanks again v

Peggy

29-04-2006, 07:57 AM

Hi Liz & Vitt,

Vitt, your symptoms sure sound like Osteitis.... I too have that click in the pelvis. Yes the pain can be excruciating when lifting my leg to put on trousers, and I feel it the groin creases (underwear lines). The pubic bone is tender when I press on it. However my Osteitis was diagnosed immediately by a simple xray. I wonder if it's more difficult to diagnose in men?

A GP once told me that for a long time Osteitis Pubis was considered a felacy....they didn't believe it existed, that it was in women's minds.....until the footballers started complaining, and they started accepting that there's more to it. For doctors not to believe these women over the years......maybe it didn't show up in their xrays either. When you go for the testing is it when it's at it's worst? Inflammation does shift as we know!

Liz.....I'm actually feeling better with the help of my physio....so it's worth continuing. If I wasn't getting any results then I too would be in your predicament and would have to look at the surgery. Can I ask who did the surgery for you?.....I'm from Melbourne Australia.....is it someone who regularly performs that surgery? It's such a gamble...the surgeon I saw said it's a 50% success rate - not good enough for me!!!

vitt

29-04-2006, 03:53 PM

hey peggy

yeah I did all my tests when I had really high inflammtion and still nothing came up, did mri too and nothing....I dont really have pain as such when I lift my leg, is more the burning from the inflammation that drives me mad....but yeah I am finding it hard to get a diangosis, I went to some really high profile doctors..

did you see the products I meantioned above? I heard that magneto therapy does wonder for bone inflammation even at advanced stage, is very popular here in italy...so why not try?

vitt

29-04-2006, 05:02 PM

one more thing...how long after did you start to have bone changes...I mean from the time you start to feel the inflammation?

Peggy

30-04-2006, 05:10 PM

Hi Vitt,

I actually have a magnetic woollen underlay on my bed that I sink into every night....but I can't say that I've noticed any improvement. However, I will look into it further.

The bone changes occurred about 18mths after the first set of xrays (that is when it hit me for the first time). Pretty quickly when you think about it! That's when the changes were picked up by xrays.

I can understand your frustration in not knowing the diagnosis, therefore not having a prognosis! How can it be treated when you don't know what you're dealing with? What are you doing for treatment? Do you take anything for the pain?

Stacy

01-05-2006, 06:03 AM

Hi All,

Thank you all so much for sharing your stories. I am sooo happy to have found this site. For 15 months I have been dealing with this pain and was finally diagnosed with OP by a doctor at Johns Hopkins. (I live in the U.S. just outside of Washington DC--please don't hold that against me!) After seeing 8 different doctors, I found a doctor who recommended prolotherapy because he thought my pain was being caused by faulty sacrioliac joints and my hips. These areas were very painful in addition to my pubic bone and groin. I have had 5 rounds of prolotherapy and my back and hips do indeed feel better but my pubic bone is still sore and the muscles in the groin still hurt like anything. The prolotherapy involves painful injections into my SI joints, hip and yes, pubic bone. It's not an easy thing to get through and you cannot take any anti-inflammatories--it defeats the purpose. Just a few weeks ago I saw the Johns Hopkins doctor who diagnosed the OP and he said the prolo only treats the symptoms not the cause but his recommendation was anti-inflammatories, cortisone, rest, etc. The complete opposite. I feel like putting all of the doctors in a room and have them fight it out!!

So, I'm just not sure any more. I will look into some of the recommendations posted in the forum and keep everyone posted on my journey. I see my prolo doctor again on Tuesday and will have a heart to heart about my course of therapy. I used to run a lot and now I will be thankful if I can just walk and sit without pain.

Again, my thanks to you all and my condolences as well. Let's hang in there and hope to find some real answers.

All the best,
Stacy

Liz

01-05-2006, 09:47 PM

Hi Vitt and Peggy,
I have to say first that I live in the smallest province in Canada and we aren't lucky enough to have access to really big name doctors. When I went to this surgeon( who has a really good rep here ) he was quite excited as he had never seen this before. I also have to say that he did not push the surgery as he kept telling me that the cure,for some people, is worse than the condition (for a while ) He was very up front about it. He actually tried the injections, pelvic splint, medications etc first but NOTHING was working. I made the decision to go forward with the surgery. cause I just couldn't function any more. I could hardly walk down the hallway at work and getting up and out of my chair was excruciating. My doctor did a lot of research but he did say that there is very little info out there. The fusing of the joint is also done in pelvic injuries as well so he had done a few of those before. Peggy, I am really glad you feel better after physio although I do have to say it confuses me as the treatment for Osteitis is absolute rest to allow the inflamation in the bone to heal. I do realize that I was a pretty bad case, but I also can't stress enough how wonderful I feel now. Yesterday, I went for a walk looking for some greenery and that is the first time in 2 years I was able to go that far. I have been given my life back and all the pain that I went through with the operation is not even a memory for me. Kinda like childbirth huh? I wish youall could have the success I have had with this.

Liz

01-05-2006, 10:05 PM

Hi Stacy;
I hope that because you are catching this early that maybe you might be one of the lucky ones. YOur doctor is reiterating what my doctor said about the rest and taking it easy. That is pretty hard to do actually as everytime you even cross your legs you are irritating your pelvic joint. Rolling over in bed or sleeping on your side is hard on it too. You know, your idea of getting all the doctors in one spot and letting them at it sounds like it couold be good for your frustration. I have to say that my family doctor diagnosed it and the first specialist he sent me to just said "Yep that's what it is and it usually goes away in 8 months or so". WRONG!!! The next specialist he sent me too was the one that did the surgery and he also knew right away what it was. He also suggested another less intrusive operation and that is putting on an external fixater (spelling?) which basically immobilized the joint through scews into the pelvis from outside and a halo form around your pelvis for 6 weeks. He did not give the surgery as high a success rate as the stainless steel plate. That he gave an almost 100% success rate. It's a rougher trip and a longer recovery but he almost guaranteed the results. Now, it was last JUly that I had it and I am still not allowed to do any ab work or anything that uses my abs. I have just been given the ok to start gentle weight training with arms, no legs. They take the muscles from the pelvis, put the plate in and then re-attach the muscles. That's why it has such a long recovery period. I wish you all the best and I really wishtoo that I had found this site last year. I had no light at the end of my tunnel but I hope I can bring some to all of you. Keep on truckin!!!!!

Peggy

03-05-2006, 07:46 PM

Hi all,
I agree that it is a relief to be able to discuss these frustrations...I't just amazes me that everything we discuss is so relevant to ME! I often feel like I'm the only one, cause it's not well known & I agree that these doctors need to research it further!
As horrible as this sounds....it is known as footballers disease here in Australia because it affects AFL Footballers....because of that they have the money, and the desire to know more about it, so in time more research will be done!
Yes Liz I agree with what you said about how contradictory this condition is - they say rest will help you to overcome this condition. Well what often happens with me - whilst I'm mobile I'm okay, not in significant pain. It's after having spent about half an hour sitting still, when I get up I'm drastically worse & the pain is agonising! It doesn't make a whole lot of sense....I wonder if in 10yrs from now will they be saying to rest more? or will it be the opposite? I don't think they really know!!!

vitt

03-05-2006, 09:15 PM

Dear Peggy and all

Must say that reading everything written here is confusing me a little more, at the moment I don’t take painkillers….I go to a therapy centre and use things like laser co2, tecar, ultrasounds and must say that there have been times in the last few months when I really felt it going….I have to say that I have improved but just incredibly slowly…I am also getting some injection of acid clodronic.

Basically my probs is not pain when I am sitting, or getting up, like you people say…I can cross my legs ok still. Is more an inflammation burning feeling and it seems to be coming from the adductors tendons, mainly longus. The various people that diagnosed me said that I have adductors tendinopathy….a doct that I saw said that I should do an adductor tenotomy…so I am going to look into that in the next few weeks with a big name ortho and if he says that’s that again I am going to do it I think..

The reason why I suggested the magnetan is because is electronic megnet, which is different from the bed and bracelets…it’s more powerful and you can adjust the frequence and all. I have ordered mine last few, it’s quite cheap and guess worth trying….better than a steel plate for now. Try it, have read so much about it, sounds good.

Let me know, thanks vittroia

Stacy

03-05-2006, 10:30 PM

Hi Vitt and all,

I agree that all of the advice and different directions can be confusing. I do think it's important to stick with a course of action for a while before seeing results. In my experience, anti-inflammatories, rest and ice do NOT work. I tried that route for a while. I mentioned in my first message that after seeing a bazillion doctors, I found a good prolotherapist. I saw him again yesterday and we further addressed my areas of pain (adductor, groin, "sit bone" area, pubic bone and lower ab at times).

We decided to do prolo in the groin area all along the pubic bone and at the top. Now this sounds a bit crazy because he is injecting long needles of a glucose solution in the area and yes it is uncomfortable but the needles to numb the area hurt worse than the actual injections. It is very tolerable. There is also a psychological component to this that I think we all share. It's a bit unnerving having a doctor an inch away from your crotch with a long needle. However, I trust my doctor very much and he knew a great deal about the treatment of osteitis pubis, as well as the bad advice and lack of treatment that other doctors give. With prolo, there is absolutely no anti-inflammatory allowed. The injections purposely inflame the area in a way that allows your body to send collagen and other healing agents to the area. It worked so far for my hip, back and front pubic area. Now we have to treat the precarious muscles and tendons in the groin that attach to the pubis symphysis. And rest is not recommended--some movement if at all possible will keep the joints lubricated and I try to walk gently and move around in addition to physical therapy. I'm hobbling a bit today because of the injections but in a day or two he recommends more gentle activity.

I will keep you posted on my progress. So far it is the ONLY thing that has worked. But I would stress the importance of finding a doctor you trust and one who knows his/her stuff about this condition. It is also expensive and insurance doesn't cover it here because here in the U.S. our health care system has enormous limitations and doesn't cover "non traditional" approaches to well being. I will have to go another 3 to 4 times so the wallet also suffers.

I hope that doesn't confuse things more. Just to say be careful about the anti-inflamms, cortisone, steroid, etc. They are temporary relief for our chronic condition and do not address the repair and healing process in my experience.

To be continued...
Be well,

Stacy

Peggy

05-05-2006, 08:54 PM

Hi again......Vitt I don't get the burning sensation you spoke of, my pain is more of a throbbing pain. Sometimes feel like I've been tendorised with a mallet (yeah an exaggeration....but you get the gist!)

Stacy I've had the cortisone injection....OOOOOUUUUCCCCHHH!!! Boy did that hurt! But a relief when it was over...and sadly NO it didn't do much! But I had to try! Like you said, you need to follow a method of treatment & see it through. True that it hurts the hip pocket....but if it helps your quality of life then it's worth a go! I haven't even heard of the treatments you're trying, let alone tried them.....I'll follow your progress with interest....at least you've found something that is giving you some results.

Take care all, Pat

vitt

05-05-2006, 09:53 PM

hey peggy

are you in sydney? I can give you the name of someone that does prolotherapy there if you want to try, cheers v

Peggy

06-05-2006, 09:47 PM

Hi Vitt,
I'm in Melbourne. But you know...as I mentioned I'm getting results with Physio....so I'm happy to keep going with it whilst it is offering some relief. This time last year I was crippled over with pain & cringed with every step. I still get pain....but a lot more bearable.....I'm gonna see this through I think!

Peggy

Ireland

07-05-2006, 09:27 AM

Hiya Peggy & all...
Apologies for the long silence... Having emailed you to try and re-start this thread I then didn't log on for the next month... Sorry!

I've had a slump for the last while. I now have a Disabled Parking Card as I can only walk very short distances and I need to be driven to all my appointments, as I can only drive for a few miles at a time... my left side is my worst and depressing the clutch makes me so much worse it's just not worth it! I'm looking into getting an automatic car.

The acupuncture is still helping... but not incrementally. The Chinese medicines I'm taking are mainly to help with the emotional aspect of this, I'm unable to take the Chinese anti-inflamatory she has as I'm 'still' breastfeeding.

I don't know if the medicines can be bought 'over-the-counter' but the names of the ones I've taken are:
Suan Zao Ren Wan
Liu Wei Di Huang Wan
Tian Wang Bu Xin Dan

There are also 'natural' anti-inflamatories one can take like Aloe Vera (not whilst breastfeeding), Ginger, Nettle, Celery, etc. I take an MSM Glucosamine joint complex made by Higher Nature which contains some of those anti-inflammatories as well. I also take Omega 3,6, & 9; Eskimo Oils; Magnesium and a Vitamin B complex which I alternate with a multi-vitamin.

Liz, it's so good to hear a positive report post-operatively... where in Canada are you? I've a sister living in Kingston, Ontario. How lucky to find a communicative surgeon - I've had bad luck with that. The first guy didn't seem to know any more than I did and the second one probably knew plenty (he's operated on 3 post-natal OP women) but he wasn't a chatty sort!!! How long ago did you have the surgery? What surgery did you have - just a plate inserted or a bone-graft supplemented with a compression plate? How long did it take to recover and how long after surgery before you then thought that it was a good idea? Loads of questions I know... but you're the first woman I've come across who's had the surgery!

Have you read Bob's OP Journal...? I think I left the web address for it on an earlier posting. By the way he really does NOT recommend Prolotherapy for Osteitis Pubis!

I've been advised to take anti-depressants (which I'm resisting)... the thinking being that there is a link between chronic pain and depression and that the depression then makes the pain harder to bear and the cycle goes on... anyone with an opinion on this...? Or indeed any other treatment options... trick for not going slowly insane, etc.

Keep well & keep posintg,
Luz, Ireland :confused:

Peggy

07-05-2006, 10:06 AM

Hiya Luz,
Sorry to hear you're going through such a rough time. I know what you're going through, try to stay positive...you always know that when things get too rough there is the operation to fall back on.
I too have the Disabled Parking Permit, and what a blessing that is. Nothing's worse than getting to the front door, the pain hits you and thinking how am I gonna make it back to the car! I've had those moments and I'm sure people stare at me thinking what is wrong with her...she's cringing in pain - she looks fine. I've even had people curse at me for having the Parking Permit. Because we don't have crutches or a wheelchair - the condition isn't obvious, so they think we shouldn't have it! How dare they!!!
Luz do your best to stay positive - cause you need your strength to fight this condition. Oh, and I too avoided the anti-flammatories for the first year whilst I was breast-feeding. I was told Nurofen was safe to take, but I didn't trust it! So I just put up with it. In hindsight I don't know if that was the right decision.
Patricia

vitt

07-05-2006, 05:03 PM

hi ireland

yeah you should really try and stay up, it's the only thing we can do....did you read my previous posting, in italy and worldwide magnetic therapy is proved great for joint inflammtion and disease....but no so much the bracelets and bed thing...but an electronic field device.....I have ordered mine at http://www.magnetcure.com/ but hasnt arrived yet, tho you could have a read of what it does.....what not try, however will let you know the result when I get mine

there is also this product for joint pain that's quite good, called hyaluronic acid, you can buy it at the help shop

I guess being depressed could cause more pain, but I believe that if you do find the right treatment you should see some results, it's no like you want to be in this situation either....right?

keep up, v

vitt

07-05-2006, 06:07 PM

hey girls

I forgot...but wanted to know how far are you able to walk this days, thinking that maybe it would be a good idea to get crouches, so not to put all the weight and inflame more then area...any thoughts? cheets

Liz

08-05-2006, 10:20 PM

Hi everyone:
I am just grabbing a minute at work to read all your letters and I am feeling so sad for you all. Actually, I am feeling a wee bit angry at the doctor who wants to give you anti-depressants to help you "Control" the pain. Boy that sure does makes me want to ask him if he thinks it's all in my head. I can tell you one thing for sure and that is my head was one of the places that there was NO pain!! As for what I had for an operation, I had a stainless steel plate put in to fuse the pelvic joint. I did read Bob's log but it really wasn't overly similar to my situation. I was up a lot faster than him for example and I only took pain killers for a week or so. After that, ordinary Ibuprophen usually worked for me. The operation is considered a major one ( according to my surgeon ) so I was prepared for big time pain. I got that for a while that's for sure but it wasn't for as long as I thought. My operation was on July 15, 2005 and I was in the hospital for 10 days. ( It was longer than expected but again, my surgeon is a really great guy and he said he wan't discharging me till he was darn good and sure that I was ready to go, no matter what the administration said ) What a guy!! Anyway, I was pretty bad for about a week after that but I was able to get up to the washroom and hobble to the kitchen etc. even though apparently I wasn't supposed to. We are AVID campers and I was really having a hard time missing out on the weekend trips so 2 weeks after I got home we went camping with other family members. Now, we have a motor home so I was able to sleep in a bed and take it easy but I felt well enough to walk around a bit with a cane and sit in the sun and get waited on. We went every weekend after that and when I went in for my 6 week checkup I got lambasted for doing too much!!! I had been walking and shouldn;t have been. I then had to backtrack to laying on the couch and just sitting in the lawn chair for another 6 weeks but the pain was very manageable. I was off work for 3 months and when I came back I still had my cane and had to re-think my way of doing things..ie; using inter office phone instead of walking down the hall to talk to a co-worker. I have tos ay, that there was NOT a single moment when I did not think it was a good idea. It literally was the only way I had left. I had SIX years of pain, agony, depression, horrible weight gain and no hope. I would do it again in a minute. Why? My only daughter is getting married next summer and she wants to get married on the beach. ( Where else when you live on an island?) Anyway, yesterday we went scouting locations. It was a beautiful sunny day, and here I was with my husband, son and daughter. walking along the beaches, gathering shells... I stopped and almost started to cry when I rememberd the last few years and here I was, walking for miles it seems. Do I regret it? Not for a second!! Do my stomach muscles still hurt? Yeah a bit. I still can't do a work out and I still have an extra 40 pounds on but that will go with time. I have my life back and I hope you all know that there is hope out there.

Unregistered

09-05-2006, 02:11 AM

dear liz

thank you for the lovely words, i guess we all need some encouragment here. Guess everyone is different and so the recovery time too, and state of mind of course.

can I ask you once again which very your exact symptoms pls? did you have a burning inflammed feeling along your adductors/groin going down the inner legs and the knee...? and of course some pain in the front of the pubis too. Basically ccould walk at all or much...

You were VERY lucky to have found a good surgeon for a start and most of the time that's all you need I guess...probably that's what we are all missing so far....so keep try i guess, love v

Liz

09-05-2006, 05:00 AM

HI
When it all started I was going to the gym and I noticed that I would get pain in the groin area when was walking laps. I thought I had pulled a muscle or something. Then I started getting excrciating pain in the pubic bone area but mostly to the right of the joint. Only huge amounts of Ibuprophen even took the edge off. I also started noticing a clicking sound when I would roll over at night. (That was just gross. Once when I had company I crossed my legs and someone acoss the room heard the noise!!!!) Anyway, it was mostly centred in the pubic and groin area but because you start to compensate for the pain by trying to walk, stand or sit differently, the muscles all over become affected. My right leg was actually an inch larger than my left because I tended to step with my right leg and bring up my left leg. This is one reason my surgeon said a lot of people have muscl pain in other areas as well. At the end, the condition was starting to show up on the left side of the pubic joint as well so I was getting worse instead of getting better. the pain was knifelike but also burning it was so bad. I'm probably not helping much with this. When I was at my worst, I had to leave work one day as I couldn't even get up from may desk and walk down the hall which is about 8-10 feet the pain was so bad. Normally, I always said I had about 15 minutes of walking and had to plan my stops accordingly. I had a Handicapped Parking Permit too and that saved me a lot of steps. Just keep on trying to find that doctor that not only knows about this condition but believes that it is real and it HURTS! When I finally made the decision to go for it, my surgeon had me booked for surgery withing 3 months!! I told him my sanity was in danger and he said that he understood and that he would do his best to get this solved.

vitt

09-05-2006, 06:40 PM

thanks liz and all

yeah I guess that if i could find a doct that offered me the surgery I would probably start to consider it too....after many questions to him. the thig is that some people say that it's not 100% sure of the outcome, guess that's a little scary, but you are a good example of it.

hey girls, peggy and all, which one of you is in sydney? and has found a doct that offered the surgery? just good starting to get some names going,......still have a few treatments to check out too....cheers Vitt

Peggy

10-05-2006, 08:53 PM

Firstly Liz thank you for the insight, if I was at the stage you reached I too would have gone for the surgery & I'm glad it's paid off for you!......given that you have a daughter about to be married, I'm assuming your condition hasn't come on following child-birth?? This condition seems to be common to footballers and mums following child-birth....

Vitt, I'm based in Melbourne. I've only seen one surgeon who recommended fusing the joint (as with Liz). However he didn't leave me with an ounce of confidence. He said 50% success rate & often required several attempts, as the bone marrow taken from the hip may not take. It was a very graphic & horrific appointment....I won't be going back to him I assure you. If I was to take on the surgery I would be going to a surgeon that has done these surgeries on AFL footballers. My physio said she'll recommend one to me if I get to that stage. However, the pilates has been great. I can walk distances pain free. I couldn't walk more than 2mtrs without excruciating pain 5mths ago. For me I'm working on strengthening my core stability....the pelvic floor. Like you've all said....it's finding something that works & seeing it through!

Take care........Peggy

Liz

11-05-2006, 02:49 AM

Hi there!
I am glad to hear that you are doing better. You're right, I am a wee bit past the child bearing stage ( my youngest is 19 and oldest 30 ) That is one reason my diagnosis was a bit of a surprise as it is most common in athletes and women who have young children. I am puzzled though, Peggy , why the physio is working for you as in this condition, the inflamation is in the bone and movement irritates the bone, thus irritating the condition. I find that a wee bit puzzling. But hey,, if it is working! My surgeon just shook his head when I said I was trying physio and told me to STOP!

The bone graft is a harder operation as you are recuperating from two steps really, taking your bone and then fusing the joint. With the stainless steel it is one step. Funny how my surgeon said almost 100% success rate and yours says less than 50%. It's no wonder everyone is so frustrated. Even though Prince Edward Island may be the smallest province in Canada, I sure lucked out in the doctor area.
Good luck and I'll be praying for you
Liz

Matt

12-05-2006, 12:12 PM

hi,
For the last 12 months i've had a niggling pain in my left groin. Even though it was constant througout last year it was never bad enough to stop me running or playing football. Over the break it went away but the niggle came back soon as pre season began. As the season began, my groin pulled up sorer after each week until the last couple of weeks were the pain has increased so much that i can't run or take part in training. A pain in my very lower back has also become present, just at the top of the buttox. I have also began to feel a pop or click in my groin when walking, standing up and in an out of the car. Have had one session with a physio but he cannot yet make anything of it. I was wondering if this soundslike the symtoms of OSP? And if they are the symptoms that anyone on here has felt?
Cheers.

vitt

13-05-2006, 02:06 AM

hey liz and peggy

yeah I agree with liz, very starnge how doing something so intense as pilates can get you better, can't argue with successtho, but there is no way that I can move, it makes me worst immediately...maybe yours was at a better stage...

well I am going to see other 2 surgeons in Rome next tuesday and hope to make something out of the trip if not, I am even considering to come to canada to check out your guy Liz, I know it sounds mad but somehow I feel safer to go to someone that actually understands me and cured you well....

my boyfriend also seems to be keen on the idea, we are getting all quite desperate and the medical bills has reached some crazy figures, a few more try here tho.

Liz, can I ask you again the approx time for the recovery pls? no perfect that it is, but at least to the point where you could function without too much care from others pls?

well lots of love and keep posting, thanks vittoria

vitt

13-05-2006, 02:08 AM

Liz

13-05-2006, 06:23 AM

Hi Vitt
I had my operation on July 18th and was back at work on OCt 18th. I was able to function fairly well by that time,, walking a bit and only using my cane for longer spurts ie: a bit of grocery shopping maybe. Now I was still not supposed to do a lot but I have to sy that it was hard to reign myself in. I have to say that after 6 weeks i felt SOOOO much better that I did too much and as I have said, had to ease back to laying on the couch for a few more weeks. The recovery really was nothing compared to what some of you are going through now. My doctor's name is Dr. S. Miller and his office is located in Charlottetown, PEI at the Polyclinic, 199 Grafton Str. Charlottetown, PEI C1A 1L2. if you want any information from him perhaps.
Bye for now
Liz

Peggy

14-05-2006, 04:22 PM

Hi Liz & Vitt,

Vitt when I say I'm doing pilates - it's very mild! I'm doing very basic & simple moves that someone without this problem would laugh at, but for me to be able to do some of the movements is a huge step. Liz the surgeon I visited also said physio would be a waste of my time. But for me the results speak louder....so yes it's working for me! FINGERS CROSSED!

Vitt has this problem come about for you following child-birth? Do you do the basics like; before standing have both feet firmly placed on the floor, better to take little steps rather than big ones, sleeping with pillow between legs? These tips certainly won't cure the problem, but will help to reduce the pain.

gotta go, take care Peggy

vitt

15-05-2006, 11:25 PM

hey there peggy

yeah I do all of the things you meantion in a natural way, I think that the pain itself make you do that....

i do some basic excercise too sometimes but they are all laying down as standing up would be too hard for me. more stretching for me but i have to be so careful that everything becomes really inflammedstraight away.

Unfortunately for me it was doing sport, it mad to think back at it how something so minor turned out to be a mad case, thanks will keep posting too, going to see the surgoen in rome tomorrow, ciao v

Liz

16-05-2006, 04:00 AM

Hi Vitt and Peggy
Just wanted to say good luck with the surgeon tomorrow Vitt. I was the same as you re: the exercises. As SOON as I started doing anything the pain was excrutiating!!
Let us know what the doctor says!!
Liz

Unregistered

16-05-2006, 08:09 AM

Liz

16-05-2006, 09:19 PM

Hi There
Actually, I have to argue that the surgery is the worst way to fix this problem. I had it and I have to say I would do it again tomorrow without a second thought. Try everything else first but it is there at the end of the tunnel. Please don't tell others that it is the worst thing as it really could scare people off and I have NOTHING but wonderful things tosay about it!
Liz

steely834

18-05-2006, 01:21 PM

i didnt say i have had an operation i meant i had OP osteitis pubis, i belive that surgery shoudnt be the best option, i tried physios and everything else but there is one guy out there that can quickly fix osteitis pubis with NO surgery just with his hands all people shouldn't have to go what i went through for over 2 years trying to play football anyone wanting this guys number or more infomation email me steely834@hotmail.com

Peggy

19-05-2006, 08:03 PM

Hi Steely,

Yes I'm totally interested in this guy you've mentioned. What is he??? What medicine does he practice? It's almost unbelievable to think he's almost cured you after only 4 sessions? What did he do???

Unregistered

20-05-2006, 01:41 AM

hi peggy and liz

well this guy that steel is been saying sounds quite unreal, maybe his OP wasnt has bad as this...maybe some kind of manipulation?! that would mean a trip to the states I am getting....

so I went to the guy in rome and I found him a little more prepared but it still was all a bit of a clue to him too, he ordered another mri and I will have to go back to him in 10 days, he meantioned some injections....I really get the idea that very few people have had this thing around here...

Liz, I am giving time another month or so and then will try and plan for the trip over, does your surgeon have an email address I could use, would you be happy to ask him pls?

Liz I think that you are right abut the surgery approach and not to scare people off, we have all had different experiences...cheers

Unregistered

20-05-2006, 01:43 AM

BTW that was me Vitt, not sure why my computer does show the name well, cheers

Peggy

20-05-2006, 01:01 PM

Hiya all,

Vitt, sorry to hear that you had no success in Rome...maybe it is worth seeing Liz's surgeon given her success. I'm waiting to hear from Steely (of course not pinning my hopes on that), but I'm open to alternative therapies.

I used to suffer with tendonitis for about 7yrs, gosh that was another struggle I had.....but thankfully it's a thing of the past. I saw a kineisiologist for 2 visits & could thankfully say he cured me of it. It had a lot to do with my body being out of alignment (in short). Of course I went to see him for the OP also - but unfortunately, no it didn't help. Gotta keep an open mind....

vitt

20-05-2006, 05:38 PM

that's interesting peggy about the tendonitis, this seems to be the same problem I get faced with, that all doctors here seem to put it down to tendinopathy....so it may well be, but I have tried all sorts of therapies for it with little results...in my opinion I may have both.

I got in touch with a few people from this site that had adductors tendinopathy and had the surgery for it, they said that by the end of it they also had OP with it due to the pulling of the tendons on the bone, that could well sound like my case...... they were ok after the surgery to the tendons

I guess that the best option would be to find a honest surgeon that specializes in both and can easily say what causes the prob....hoping that liz's guy could be the one, so that even if are the tenodns he can still help with it all.

Peggy where did you have the tendonitis? sometimes I feel like I know more then doctors....keep in touch

vitt

20-05-2006, 06:36 PM

hey peggy, yeap I have found the guy still is talking about, check here http://www.australianrules.com.au/2005stories/patallen.html

so donal is in Oz right? I normally live in sydney too.... do you know where excactly it is? sound really impressive, I would love to have this guy's number and have a brief chat, cheers v

Peggy

21-05-2006, 06:16 PM

Vitt,

thankyou thankyou thankyou,

I truly appreciate you sending me that article, it's great! When I read it in more depth I will contact him to discuss my circumstances. Donald is a few hours drive from Melbourne. I'm willing to go the distance if he's as good as they say!

He sounds alot like a kineisiologist, they work on the positive energies of the mind etc. etc. etc. They're a bit far out....but if they work - who cares!

I had tendonitis in my right wrist which caused stiffness up my arm, shoulder, neck, etc. It was a kineisiologist who cured me of it.....and I'm forever grateful. When I went to see him for my OP it was extremely painful. He was rubbing my body roughly....ridding my body of toxins that were clogging my immune system....sounds out there I know, but I had to give it a go given my past success. This same kinies't helped a cousin of mine. She was told she needed surgery on her knee - had inflammation from playing netball. She saw him for 2 visits & was cured, no surgery required. If you ever hear of one that's worked wonders.....I recommend you give them a go, it's worth the try.

Take care, Peggy

Stacy

23-05-2006, 02:17 AM

Hi all,

Thank you for the latest posts about Pat Allen. Can someone post his phone number--I can't find it? I live in the U.S. but wonder if he knows someone who does the same thing here??? I'm tempted to fly to Australia! THis sounds too good to be true. I have another round of prolotherapy tomorrow. He thinks 3-4 sessions should do this. (Bob, from Bob's OP page emailed me and said prolotherapy could work, he just didn't have success with it).

I just feel exhausted, as you all know, and don't know where to turn anymore. The prolo is painful but it's the only thing I have left since I tried all sorts of things. I would much rather have someone loosening my muscles instead of injecting me with needles. If there is anymore info on Pat Allen--please share it! A year and half of guesswork is wearing on me.

Many thanks and best to all,

Stacy

Peggy

23-05-2006, 07:25 PM

Hiya Stacy,

Steely let me know that an article was placed in the Weekly Times on Wed 17th May on Pat Allen. I checked their website, but no article. I emailed them & they said yes there was an article published on him, however I'll need to phone & order a back-issue which I'm hoping to do in the next 2 days, hopefully get it soon. Let you know of the content.

Take care ladies,

Peggy

Peggy

23-05-2006, 07:27 PM

I am planning to call Pat Allen also & schedule an appointment. I can be the guinea pig & let you all know how I go. It's a hike for me to get there, but nothing compared to you guys o/s.

steely834

23-05-2006, 09:39 PM

Hey Pat Allens number is 03 54 971433, he lives in donald Victoria about an hour and a half from bendigo worth a shot it helped me, just dont ant others going through what i went through thats all

Liz

23-05-2006, 10:11 PM

Hi Everyone
I have been following all the messages here for the past while and while I am glad that some of you have had success with whatever it is that you are doing, I hope you are successful and not do any more damage. My confusion still lies in the fact that some of you are talking about strengthening the muscles whereas it has NOTHING to do with your muscles. If you have a proper diagnosis of OSP you have an inflamtion INSIDE the pubic bone and building up the muscles or back or whatever isn't going to do it. You have to clear up the inflammation and to do that you have to let the joint rest to heal. All the exercise, work etc that you are doing scares the heck outta me. There is not a miracle cure out there people and I have to say that I am very leery of anyone that says they can cure OSP in 4 sessions. I'm sorry if I am offending anyone but NO WAY!!!!!!!!!!!!! Not if it is OSP and if it's as bad as you sound Peggy! I know what is is like to be almost floundering out there because you want so badly to get better but please....be careful!!!! Just for information, I actually helped chingle the roof of my house this weekend. Granted I couldn't actually stay on the roof as crouching still isn't something that is comfortable, but I was on the scaffolding. Then I mowed some lawn and planted some flowers. Please think carefully before doing anything and be ware of anyone that you can't really check out. A lot of people will say that they have been cured but maybe theywere misdagnosed in the first place.

Liz

Stacy

24-05-2006, 12:27 AM

Hi Peggy,

That's great! I so so so hope you come back with your own success story! Steely emailed the number for Pat Allen in case anyone else needs it.

It is 03 54971433 (plus the Australia area code).

I just came back from prolotherapy and it is tough to get through but my doctor reassures me it will be worth it. I would still fly to Australia though if this guy can work his magic.

Best,

Stacy

Stacy

24-05-2006, 12:38 AM

Hi Liz,

Just saw your message---point well made. It is confusing with all the different angles. We are all looking for the magic pill so it's exciting to hear about a good thing. But caution of course should be exercised and I think all of us have been through so much that it might get easier to spot a dangerous alternative. And that's why I love this forum--we are all here to support each other and keep each other in check!

Thanks again and way to go on the roofing project!

Stacy

Peggy

24-05-2006, 01:52 PM

Hi all,

Yes thankyou for all your opinions. Yes Liz I know what you're saying, that it's strange that my condition is improving with exercises......I too find it exceptional that by doing some simple exercises that it is helping...I have the marrow oedema in my pubic bone also......but the fact is IT's WORKING. I'm not about to stop doing what is actually helping me. I can lift my son now, I can get dressed whilst standing (sometimes), I can walk for 15min's relatively comfortably. This time last year those things were out of the question.

It is hard to digest that someone can cure it I agree, but you know what? I'm willing to TRY! Like I said, I'll try everything like mad before I have the surgery....cause even if I was to have the surgery that would be years away from now...whilst I have young children in tow. I truly believe that there are people who are gifted, that the medical profession can't explain. The medical profession hasn't done enough as far as OP is concerned. Not enough treatments have been proven successful for OP sufferers, it's all trial and error, what works for one may not necessarily be good for the other, so I don't think it's fair to say no to anything. For me, I'll be keeping an open mind.

Take care all,

Patricia

steely834

24-05-2006, 03:48 PM

LIZ trust me i am telling the truth i was properly diagnosed in melbourne, actually i was giagnosed twice. Once when i was have nuclear medicince for my back in which they told me i had oestities pubis and again when i had x rays on my groin. Pat allen by massaging the inflamed area on the bone releases the pressure and pain. It is a mircle cure if you want proof go and visit him your self or at least give him a ring. I noticed to difference after 2 visits, at least let people try this so they can find out by themselves before you say that it cant work because it does work read the weekly times last wednesday if you want more info

vitt

24-05-2006, 06:58 PM

thanks peggy

yeah that would be great...sure we have to remember that everyone is different and may have different effect....but even some kind of improvement would be good too. keep posting vitt

Peggy

24-05-2006, 09:48 PM

Hiya guys,

today I called Mr.Allen & am excited to say that I'm going to see him. There is however a wait....I am going to see him late July. What we spoke about was promising...he said he'll be able to tell me in our first visit whether he can help or not. But as Steely said, he's been successful in helping many OP sufferers (mostly athletes).

Can't wait!!!......But you know what guys? like I said earlier; what works for one may not necessarily work for another. So whether you give this guy a go will have to be based on your research and judgement. Whether that's worth going by my experience, it's still a gamble, & huge considering you're contemplating travelling from overseas. WOW!

It's a big thing...but then we all know how frustrating this is, and the surgery is totally overwhelming.

Peggy

24-05-2006, 09:52 PM

P.s. Stacy I don't really understand what's involved in prolotherapy.....is it possible to tell me briefly what it is? I'd never heard of it before you mentioned it....

vitt

25-05-2006, 12:40 AM

vitt

25-05-2006, 01:03 AM

hyia all

I have just now noticed Liz message and have to say that I was a little unsure at the time...but you know I agree with peggy that there are some people that are gifted or have developed their own technic to solve a problem......

I once went to a guy that did cranial sacral and tell you that the men hardly put his hands on me and managed to sure my low back pain after the first 2 session, I was blown out too and it was hard to explain what he did too.... part of it is about believe it too...strange but true

sure it is a huge responsibility to get on a plane to fly all the way there, but I dont think I could happily face surgery without trying him out first...so....

love to all v

Peggy

25-05-2006, 08:15 AM

hey peggy that's great, wow this is a huge wait...over 2 months...I normally live in sydney so it was my plan to come back there, and I guess with that wait there is no hurry either.....

i guess it's still worth try for other things in the meantime...prolotherapy are injections (do a search on the net)...I had a few before leaving sydney but with no result, the guy that did it said that you have to do a long course with a 4 weeks in between each one...so quite slow thing...I didnt get much out of it really....but it's worth the try again....will try to get in touch with pat allen too....did he say how many sessions willl you need and how far apart?

cheers V

Yes Vitt I asked if we could do the sessions over a few days? so as to save the travelling back & forth. He said there needs to be time in between to allow for healing. He said for most people 2 sessions is enough, on the outside some need 3 sessions; which sounds reasonable to me.

If you're serious about giving him a go, call him. The recent publicity is keeping him VERY BUSY.

Stacy

27-05-2006, 01:30 AM

Hi everyone,

Peggy, I'm excited for you! Just having a new hope about something can make the time go faster and the body feel better! I would seriously consider flying to Australia after a conversation with Mr. Allen. Prolotherapy is a series of injections---they inject glucose and alcohol to purposely create inflammation so the body sends healing to that area. I have to say, in some areas it has worked for me but I just had another session this Tuesday and he injected my pubic bone and both sides of my groin near the bone (yes--up close and personal) It really hurt this time and for three days now I've had a hard time walking. I go back and forth about whether or not it's working and quite frankly, feel like giving up because the thought of going through it again sends me to tears.

A few months back there was some discussion about a Wei patch that heals bone and muscle. I looked into that too and I might order some and try. I'm at that point.

So again, whatever you need to do. Maybe I'll call Pat and see if I can get an appt. in July and we can have an OP healing gathering!!

Best to all,
Stacy

vitt

27-05-2006, 04:09 AM

hey stacy

yeah didnt have much success with prolotherapy too...did you see my posting about the Wei path or did you see them somewhere else...just curious, they could work, depends how bad you are.....or at least help,

did you also see my posting about the magnetan...check their site is very good, and that too could work in reducing the inflammation in the bone, I am patiently still waiting for mine that got stuck into custom....quite annoyed with that really, but here in italy it's very popular for arthiritis and the like.....so it must work on some level, it's quite cheap too....maybe u would try these

and of course there is the trip to Oz too, it is hard to say whether that would work until you go all the way there, I was considering of getting peggy's experience first and then decide, but I know that's no garantee either, but
....keep in touch, vitt

Peggy

27-05-2006, 08:40 AM

Hi Stacy & Vitt,

Yes I'm totally over the moon to be seeing Pat....which seems like an eternity away! I did get hold of that article on Wed 17th May; it's similar to that article Vitt forwarded to me with even more success stories. He seems to have the medico's baffled. He doesn't have formal qualifications, he was taught this form of manipulation from a friend which he performed on greyhounds....their owners wanted treatment themselves & it just went on from there. He has treated high profile footballers here in Australia...who are willing to travel from all over Australia. There's no medical explanation for his treatment...but it has been proven to work for OP sufferers. He has cured many.....

So yes......my spirits are high, waiting in anticipation....cause like for all I find OP to be a frustrating condition, it's a vicious cycle that needs to be broken! Sadly I'm not one of the lucky ones that got over it in 12mths. I really hope & pray that I will have a success story to tell you about in 8wks time!

Take care ,
Peggy

Ireland

27-05-2006, 11:26 AM

Hi
When I first read Liz's message about the surgery going so well it encouraged me to think that maybe it wasn't such a bad option... however, two things that have changed my mind somewhat...

1. Liz, your kids are older and therefore being totally incapacitated for a time may not be as overwhelming for your family as for those of us with very young kids... BUT more importantly...

2. I've made contact with another woman here in Ireland who developed OP during pregnancy (4 years ago). She had surgery in July 2004 to have plates inserted (having previously tried many different options) and she now has terrible trouble both in her pubis and in her SI joints at the back... They're are now considering having to take the plates back out...!!!!!!!!!!!!! I'm not sure where that'll leave her.

A different surgeon I contacted in Dublin, the secretary said that some stretching exercises are recommended and that is often enough to remedy the situation... even for women who've had a symphysiotomy!

The truest words I heard though were in an email from one of the authors in Wales, UK of the paper on the surgery Bob had... "you will receive many different opinions depending on who you speak to"... how true! In the meantime we can try to keep one another sane by posting here.

My latest attempt to find answers is to contact my national Patients Association and ask them to look into it for me. I also contacted a local politician to table a question in the National Parliament and to ask the Irish Department of Health... I'm sick and tired of trying to find the answers myself and think it's time someone else did some homework. Does anyone fancy contacting Oprah???

Keep posting,
Luz

vitt

27-05-2006, 06:55 PM

hi ireland

well it's very hard to make a choice about the surgery, I believe that there are a few things that count, the surgeon track records most of all and a bit of luck too...

two friends of mine went to the same surgoen to get their lips fillers and one came out lovely and the other with infection to the lip and all sorts of prob....

at the end of the day it is always a surgery and not result is 100% that just it.....I think you doing well to get some help from the council and so on...hopefully they'll come up with something too, but it's just such at a rare thing that I wont be surprised if there isnt much on it.....

the stretching excercise sounds great, have you book in with this surgeon too?! in a way it could be closer to what patt allen could be using, releasing muscles etc....I would book if I was you...keep us posted, love v

Peggy

27-05-2006, 09:32 PM

Hi gals,

Luz, I agree there are many concerns when it comes to surgery! I wasn't convinced....given the success rate wasn't what I considered successful (at only 50%). On speaking to my physio, she said if ever I was to go that way, she'd recommend a surgeon who performs the procedure often, that has a good reputation for doing that surgery (that worked on the AFL footballers). I know I mention the footballers often, that's because they're the most common sufferers of OP.

Luz what about that procedure they were trialling that is less invasive and that had a quicker recovery (was it in Sweden?) It was mentioned in one of the earlier replies. I wonder if there is a contact to ask more questions of. If I was prepared to go for the surgery, I'd certainly look at that first! I mean arthrodesis surgery is bad enough, the recovery almost sounds worse. Too damn scary for me!

I still recommend the core stability & strengthening exercises, they've made a huge difference for me!!!

Keep in touch, Peggy xx

vitt

28-05-2006, 04:42 PM

hey Liz

did you get a chance to see that message i sent pls? sometimes I dont get the warning about messages anymore...

yeah that other surgery, in sweden sounds a little less invasive...would there be a chance to find some info on it? unfortunately on the net there isn't everything that's out there......like in italy the info a so bad cos not many people have web sites yet....but will have a look for it....I am going to call pat allen on monday moring and have a chat with him about it, and try to book in maybe for early september, quite excited, bye all

Lau

29-05-2006, 11:45 AM

Hi,
About 5 years ago I got Osteitis Pubis from walking with the wrong shoes. I'm an odd case. It took me about 2 years to get it under control. It took me longer than that to finally understand the triggers of how this comes on for me and how to deal with it. I will never fully be over this. For most of you that will probably be the case. But you can get it to the point that you have it under control and know how to handle it when it comes back.

Once I knew I had this I needed to find the right doctor. Most don't understand this and don't treat it agressively. I don't believe rest and anti inflamatory medicines will do the trick. The doctor I found works with the NY marathon and gave me cortisone shots to get the inflamation down. I then did physical therapy. I strengthened and stretched my musles. Very important. The BEST THING they tought me about was a long white foam roller. Use it--- it is very painful in the beginning. Go on the floor and roll it on the front, side and back parts of your legs. It works out the tight muscles and gets the circulation going. Every time I have a relapse, I bring the foam roller log out and use it a few times a day. Understand the last time this came back, it came back so quickly. Just from walking. For me it changes the tone of my leg muscles, tightness and circlation right away. I can now get over the flair ups within 2 days if I use the roller ball agressively (a few times a day). I also do lots of stretching. I found for me that I need to exersicise regularly to keep my muscles flexable and strengthened. Good shoes that have cusion are a must. I stay away from heels.
Good luck let me know if I can answer any more questions.

vitt

29-05-2006, 06:06 PM

thanks Lau

must say this is the first time I hear about that, I can't quite imagine the roller you talking about, is there somewhere on the net you can buy it maybe?

I once went to a doctor that used a wooden roller, much like the ones people use for massaging their back, and he did the same thing over my legs, with not real pain reduction....would that be it? thanks for your experience tho.....I guess it depends how bad some of us are

PEGGY, IRELAND and ALL

Have some good news about the (Successful treatment of osteitis pubis by using totally extraperitoneal endoscopic technique)....basically I managed to get in touch with the surgeon that practises this op, he's in finland and he replied to my email very quickly giving some positive info, I can't post it here cos there is an attachment but you can email me at

vmomento@hotmail.com and will forward it on to you, Peggy I have called Pat too, he said that I could help but again he needs to see me...going to rome again this week, will take it from there

bye all v

Lau

30-05-2006, 05:31 AM

Hi,
I just did a quick search and this link will show you a picture of the foam rollers.
Let me know if you try it.

http://exertools.stores.yahoo.net/follerstm.html

I highly recommend this. I didn't have a mild form of O.P. I had problems walking a few feet and now I have it under control.
Good luck!

Peggy

30-05-2006, 01:44 PM

Lau,

thanks for passing on that information about the rollers. I've never heard of them, but I will mention it to my physio, as I may not be strong enough to try that YET!

I totally agree with you about the strengthening though. Since starting my physio program, gaining strength etc. I am feeling significantly better. I can understand peoples frustrations though. It works for me, yet the next person it may not. It's not a cut and dry treatment. It's a matter of finding someone that knows enough about the condition, that then says yes let's try a few things and see what works for YOU! Finding that person that has studied it enough is definitely the key!

Vitt, I think you'd have more success treating it here in Down Under. It's a matter of getting onto a physio that mixes with the AFL clubs, that does the same seminars etc. Cause it's a big concern to them, it's putting their stars out of action. They want to find the answers. Then again, with the soccer stars in Europe...... it would be a problem there also. That surgeon in Finland is a great place to start. Having operated, they're doing the research, that should be a great source!

Keep in touch,

Peggy

vitt

30-05-2006, 04:46 PM

thanks Lau

they do look good, was there a particular excercise you were doing with it...? I am just scared of not knowing what to do and making it worst...did you say it was something laying down, that would be the only position I could work with, I have lost my leg muscles definition too, for the little amount of walking....

peggy, the guy that I am seeing in rome tomorrow is an ortho but he does work with footballers all the time....the most thing I seem to get over here is the rest thing. was doing some excercises before and have to say that I find hard to do them too....it's such a nightmare to know how to move

yeah would love to come to oz, to see pat, but love to get it all sorted here has I need someone to help me out on things...not easy, as I couldnt come over there on my own.

thanks hey, may try the roller if Lau get give me some detailed info pls, thanks V

Stacy

30-05-2006, 11:26 PM

Hi everyone,

Lau, thanks for your input. I will also check out the roller. It makes sense in conjunction with what Pat Allen does--loosens the muscles and tendons. I wonder if when using it in the front if it helps decalcify the pubic bone, too? Vitt, I ordered the patches and yes, I discovered them through your post. I'll let everyone know the results.

The rest v. exercise dilemma is indeed a big one. My prolotherapy doctor says that rest won't help and that I should try to get some exercise in. It's hard to do certain things but I gently try to retain some muscle tone with strengthening exercises. But we all have to deal with our own limitations.

Question for the women in the group--has anyone suggested getting hormone levels tested? I read that too much estrogen loosens the joints and ligaments, potentially causing bad alignment or slipping. And that too little may have the opposite effect--extreme tightness. Just curious if anyone has looked into this.

Hugs and best to all,
Stacy

vitt

31-05-2006, 05:14 PM

hi stacy

I am glad you ordered the patch, I ma interested to see how they work.....imagine you ordered the ones for the bone. I am waiting for my megnatan should be here any minutes and will let you know on that too....so these are 2 options checked out.

I havent had a test for a while but so far my hormones where ok not long ago, personally for me it is really a matter of doing sport...unfortunately.

bye everyone v

Peggy

31-05-2006, 08:58 PM

Hiya girls,

Stacy you've raised a valid point. I have noticed an increase in pain during that dreaded mthly & was told by my physio that yes the increase of hormones will loosen everything as it does during pregnancy, causing increased instability. But then, what would you do to counter that? I was told to be aware of that so as not to overdo it.......but then when you're picking up after 2 children & trying to keep up with everything....who remembers?

Luz, did you get a reply from the politicians??? Or is that wishful thinking?

Peggy xx

Peggy

04-06-2006, 01:55 PM

Hiya gals,

didn't mean to put anybody off or anything......it was just another topic of thought. Anyhow, how are you all doing?

My husband is questioning me about whether I should go and see Pat Allen. I have improved BIG TIME with this new physio......seeing huge results. The Physio thinks I shouldn't, because what we're doing is working.....my husband agrees with her. I think I should go for the chance that Pat may rid of the condition all together! What do you all think?

Keep in touch, Peggy

vitt

04-06-2006, 11:57 PM

hey peggy

I think you should go, you can say to pat what you doing with the physio and if he can speed up the process, by the sound of things he works quite gently too...I mean by what we read I would go and see him at once really, think we are thinking of coming from europe...just go and get the feel for things when you there....

I went to rome again this week and had the mri, yeah it is a adductor tendinopathy, the actual pubic symphasis came out clean of inflammation...the doct injected some anti inflammatory with a special techniche, and I feel wee better today, he says I should go back a few more times for the same treatment...failing that we could do a tenotomy, so that where I am at.......kind of what people have been saying all along but with no much evidence.....

think you should go love, vitt

Stacy

06-06-2006, 06:19 AM

Hi Peggy,

I'm in agreement with Vitt--I think you should go. I understand your concern about sticking with what works or seems to be working. I've gone back and forth thinking prolotherapy is working/not working depending on how I feel. But I think that if you tell him about what you've experienced and he is indeed gentle, I don't see much to lose. From the literature, he's not cracking, bending or manipulating, simply finding trigger points to massage important muscles. Sounds like a great thing even for the non-injured!

That's my two cents. If I were closer I'd be there, too, regardless of how my other therapy is moving along. Only you know your overall situation, though so good luck in making the best decision for you.

Best,
Stacy

Peggy

06-06-2006, 08:02 AM

Thanks Vitt & Stacy,

I'm with you both on this......I'll stick with my gut feeling & GO. Thanks for the support.

Vitt I'm happy that you received some conclusive results, does that mean you'll have to follow a different form of treatment now?

Peggy xx

Ireland

06-06-2006, 12:09 PM

Re the surgery in Finland - no I didn't follow it up as the other surgeons I asked about it hadn't heard of it... in hindsight I'm surprised by how easily I dropped that ball but I'm glad to see that Vitt has followed up now and I've asked to be emailed the reply.

I did get a helpful email back from the surgeon in Wales, UK who co-authored the article on the surgery that Bob had... I'm following up on that and he also gave me 2 more names. I also contacted the Pelvic Partnership - which is a support organisation in the UK for women with SPD and/or Osteitis Pubis and they've just sent me info & leaflets and advised a surgeon in London.

Re the politicians question... I've had a couple of replies back along the lines of we'll get back to you via the parlimentary affairs division of the Health Services Executive... but this is one ball I'll NOT drop. I intend to hound them as I think it's ridiculous (albeit helpful & necessary) that we're searching the four corners of the earth, via the web, for answers that should be answered by our national health services.

VITT... and anyone else in Europe... in the EU there is the E1.12 - which I understand is like a treatment purchase plan if treatment that is unavailable in your country is available elsewhere in the EU. So if the HSE can't advise anyone in Ireland I'll try to get them to pay to go abroad...

Re hormones and this condition... I'm definitely much worse during my periods... and until the previous comments never really understood why. So a helpful piece of info to know. Another interesting piece of info for those of us with pregnancy related Osteitis Pubis is that this is sometimes referred to as a "spontaneous symphysiotomy"! There was a storm in Ireland recently about women who had symphysiotomies... so there is some consciousness about that...

Re bringing down the inflammation I had great success with SCENAR - which I outlined in a bulletin much earlier on this site. I stopped going for those treatments largely because I had a bit of a set-back at Christmas, (which I believe was totally unrelated), but there was a bit of a panic from the physio I was going to due to unfamiliarity with the treatment!

I'm now going for acupuncture and find that it really helps manage the pain... and the emotional aspects of being unable to do 100's of things that were easy until this! The Chinese acupuncturist I go to believes that if you're young enough and the condition is caught early enough that it can be 'cured'. Whilst I no longer believe that my O.P. will be cured by acupuncture it's a good all-round treatment to improve one's health. It's worth a try as it'll improve the likelihood of any other treatment working!

Peggy - Re your question... I'm not so sure about trying something new whilst what you're doing is working. There's something to be said for the expression: "If it's not broken, don't fix it!" Maybe go along just for a chat the first session and then weigh it up when you've more info!?!

Keep well and keep posting!
Luz

Ireland

06-06-2006, 12:31 PM

A quick note...

I understand from the Welsh surgeon that the critical deciding factor re what stage your Osteitis Pubis is at is whether there is vertical instability in the joint... anything over 2mm is considered excessive. Vertical instability is up and down movement in the Symphysis Pubis joint and can be measured with 2 flamingo view x-rays - standing on one leg at a time!

I understand that if there isn't vertical instability that non-surgical treatments should resolve this condition given time and that once there is vertical instability over 2mm that it's a whole other story. I had these flamingo x-rays done by the surgeon I saw on 15th Feb - who, by the way, hasn't bothered to write back to my or my GP's questions since!!! So I'm ordering copies of the x-rays and will look for a second opinion!

Hope this helps!
Luz

vitt

06-06-2006, 10:05 PM

hey girls

glad we are all back on the forum again....peggy yeah I guess that kind of puts things a little clearer in my head. when I was in rome I started this treatment with the injections of aniinflammatory that they call, mesoterapia, basically use a very short needle, much shorter than insulin even and inject the substance, had about 30 of these all over the adductor area, I guess there is a little inflammation of the bone, but not on the symphasis, more on the lower round bits where the tendons attach, for me there is also a surgery at the end of it all, but a different one I am guessing....if thes einjections work and give some relief then I'll have to go and get another rounf, then will see, keep fingers crossed

love vitt

vitt

08-06-2006, 04:07 AM

hi stacy

I was wondering whether you managed to try out these patches yet, and if you have seen any results....they have one type for tendons healing too, pls let me know if you have, as I am keen to order them, thanks vittotria

Liz

09-06-2006, 02:31 AM

Hi everyone;
I found that interesting about the vertical instability. Hope you are all getting closer to finding help. Don't give up. I'm just thankful every day over here.

Liz

kirk

09-06-2006, 07:47 AM

Hi Guys,
I have been reading about osteitis pubis and I had it for three years, had tried everything physio treatments, lost count, went to everyone that was recommended to me and as Paulie came across a guy in Mount Waverley called Garry Miritis and after one treatment the pain had gone. I'm back to playing footy and see him occassionly for any other injury but my osteitis pubis is fine. His details if you are interested are www.miritismassage.com.

Peggy

09-06-2006, 07:50 AM

Hiya gals,

Yeah Luz I know where you're coming from.....cause that's pretty much the feeling here. But then again I tried the cortizone injection...which was quite intrusive & the feeling then was it was worth the attempt whilst doing the physio. I'm gonna look at Pat Allen in the same light. It'll be less invasive than that excruciating injection. So I'm gonna give it a go.......well worth the try I reckon!

Peggy xxx

Unregistered

09-06-2006, 11:48 AM

i have had op for a year. i play vfl football and it stopped me from playing, working and sometimes walking. i had 3 months rest, then a xtay controlled entrhoscopthy (steriod, cortizone injections in the tendoins thru the pelvis) and done 10 sessions of pilates and regular strtching. i play my fist game back next week. op is terrible but i believe core stregnthenign and pelvic floor strengthenig is the key to lessening the load on yuor adducturs, thus your pelvis. i wish you all the best with your treatment and when it is all over life is alot better. trust me.

Peggy

09-06-2006, 05:07 PM

Thanks for your message,

I am doing exactly what you've mentioned, and yes it's making a difference for me. My recovery is going to be a lot longer however, because I've put up with it for so long, ignoring the pain....as recommended by my quacks/doctors.

It's very reassuring to hear success stories from the path I'm following.

Vitt, I've finally had some time away from the kids & was able to read up on that Finland procedure. What a relief!!! Thank God there's another answer! For me, just in case I need to go that way, I would DEFINITELY go for that procedure over the more common one. It's a minor procedure with good success. Sounds good to me!........

Take care all,

Peggy

Paulie

09-06-2006, 08:26 PM

ha ha kirk take it easy on the pulse :)

vitt

10-06-2006, 01:08 AM

Hey peggy

Glad you agreed with me on that procedure, it does sound real good in compare to the rest, personally I wouldn’t take the chance and fly to the guy in finland.

Anyhoo, I have to say that I have been getting some relief from the injections, mesoterapia, that I had in rome and looking forward to go back next week again, I have also received my magneto machine that I have started today, but I am not expecting a miracle.

Finally I have found out that there is a physio in my little town that’s been great in treating this kind of injuries in the past, so I am waiting for his call next week and hopefully will start a plan of exercises, guided by someone that’s an expert, cos I don’t feel all that good in doing the stretching by myself, it’s so hard when you have been in pain for so long…..

Really trying to stay positive above it all, and enjoyed that little bit of improvement, thanks everybody for your input, vittoria

Peggy

10-06-2006, 09:40 PM

On ya Vitt,

VERY happy for you! The key I guess was diagnosing it correctly so you could take the appropriate course of treatment.

Wouldn't it be fabulous if we could say we were cured come December this year & start 2007 on a positive note. As new improved individuals! We'll have to have a pretty damn good New Years Resoloution....I'll have to start thinking about it! Mine would have to do with losing 8kgs, being able to exercise & run &......jump for bloody joy. That's what my mind says anyhow, I just hope this body of mine can keep up with my heart & soul!

I'll have to say some extra prayers tonight!

Take care all...............let's hope we can all find some answers & get past this!

Peggy

vitt

11-06-2006, 03:04 AM

hey peggy

your last comment really made me laugh and I am glad that we can keep positive and joy.

me too have some hard time with my mind and body going into 2 different places, there are so many things that I have to refrain doing, so being able to see a little improvement may be enough to brake the negative spell that long term failure inevitably creates.

I still have in mind to come back to oz in case all doesnt get fully sorted over here, so yeah all for 2007

tanks for the great note peggy, keep up the good work, love v

Stacy

12-06-2006, 11:31 PM

Hi all,

You are absolutely right about keeping up our sense of humor and smiles Vitt and Peggy. I laugh about the fact that for me, I got OP as a result of running for 28 years +. The fact that it's an overuse injury and the location of the injury really gets people wondering!

Vitt, I haven't tried the patches yet but I do intend to. I have been waiting because I have another round of prolotherapy in July. This may be premature but after my last session, I have felt 50% better. I'm walking with manageable pain and when I wake up in the morning I don't think about pain first thing! So, I'm reserved about my joy just yet because I'm not sure if I should attribute this to prolo. And of course, I'm dreading another session but my doctor said once I get over that magic hump, one more treatment should do it. I will certainly let you know the outcome. The group I ordered the patches from are very helpful and I do intend to follow through with that as well.

The magnetan looks interesting, too. Any noticed improvement??

There was a post a bit back about Mirits massage. I emailed him and although he can't do anything for me here in the US, he did indicate that he has successfully treated OP so anyone nearby might want to check him out.

Long message but one more thought. This massage, muscle therapy really seems to hold an answer for a lot of people. I'm going to try and find someone here who might be able to do something similar but I need a description (as detailed as possible) about what gets done. I know therapists don't want to share their trade secrets but can anyone out there provide more detail about the procedure?? It would help a great deal of people and would be a service to those of us who have been endlessly seeking answers!!

Best to all,

Stacy

vitt

14-06-2006, 04:26 AM

hi stacy

I am glad that you have found some relief in the prolotherapy thing, it is worth sticking to that.

have to also say that the massage thing has been meantioned many times, in fact in a previous posting I said that I finally found out about a guy in my town that's been treating these kind of things...well I saw him today and he confirmed that my problem is an inflammation to the adductors, not to the pubis sympahsis and that he's going to treat it with massage...and hopefully cure it, he seemed very confident with his experience....so massage can be the key if done with experience.

Not sure whether you can write down to someone else how to do these kind of things, people go to school for years to learn certain techniques. but once I start with mine I can write to you about how the massage gets done.

I have used the magnetan for a week now and have to say that overall I am better, but I have had the injections in rome too, so I am mixing everything at the moment, but think it's working on some level.

will try this first - next week - and then let you know. maybe will order the patches then but I am holding on for now, cos you have to have them on for days....

hope all of you are doing good, and write some good news soon. love v

Peggy

14-06-2006, 02:44 PM

Hi gals,

Stacy I can't say I know all that much about the manipulation, only that he works on the nervous system, trying to clear it out. After the therapy not only should it help the OP, but it should help with circulation all over the body. Which would certainly help ME. I'm shivering as we speak, the cold kills me. The hands and feet are always frozen (with socks & slippers on mind you). My husband is the "human electric blanket", and I'm an "ice-box".

These kind of therapists are often heard of by word-of-mouth (not sure if you know that expression). By that I mean, someone's seen him, will tell a friend, they'll tell another & so he becomes known that way. Ask friends, school mums, people you meet..... You never know, you may find a therapist close by. Even try at gyms and sporting centres.

Take care all,

Peggy

lourdes

18-06-2006, 08:54 AM

Hi you all,
So glad to find others with same pain and frustration that this OP can bring to ones life.i used to be very active running hiks you name it...(I'm in vancouver-Canada)like many of you i used to have a life,before been dignosed w/ op my doc gave me two shots of cortisone he was quite confident it would fix .Wrong .Anyways two years later I have not getting better some days i have trouble walking,my Dr. told i have to learn to live with.i did some phisio,acupucture, chiropracter treatment just went to see a sport med. he made feel like i was creating the allthing, told me he had no explanation (what a mad Carl!)I would like to thank everyone for sharing their info I' will chek with Pat Allen,who know?I have nothing to loose no more them I have with our "Medical Docs".Wish you all the best in finding a solution for OP.
Tchau,Eli:confused:

Peggy

19-06-2006, 07:45 PM

Hi all,
Geez hasn't the month flown, I have just 1 more month before seeing Pat in Donald.....and am very eager! Although pleased to say no longer "DESPERATE" as I was when I first started this thread. I never thought it possible to have come this far. Thank you all for your support, it certainly helps to have support and understanding....those that don't have OP can't even begin to imagine how crippling it is! It makes you look at things so differently, not taking things for granted like being able to walk 10 steps pain-free.

Gals, got to move the family is making it's demands....take it easy, talk soon,

Peggy -xx-

Liz

20-06-2006, 05:12 AM

Hi Everyone;
Just thought I'd pop on and say hi and hope you are all moving forward,,, even just a little bit. I too wish I had had a site like this when I felt like I was the only one in the worls with this diagnosis. It would have helped. Keep on trying. Two years ago at this time I really thought my life was going to be so horrible, one year ago I was waiting for my surgery hoping that there was a chance for a better life and this year, I spent the weekend helping my husband put in a huge new flower bed, planning for my daughter's wedding. I have to keep stressing that the surgery WORKS! Good luck everyone!

Liz

Stacy

22-06-2006, 03:23 AM

Hi everyone,

Glad to see things are moving along in a positive way for some. When we are all well (and we will get there) we'll have to do an online celebration of sorts. Just wanted to share a recent discovery. I've researched a number of practitioners here who do structural integration or rolfing. It is a type of massage but not exactly. Here is the site for further clarification.
http://www.rolf.org/about/index.htm

I found a woman who is familiar with OP and is optimistic about the benefits of rolfing, particularly on a long term basis because of the alignment factor. I can't get in to see her until the end of July (I suppose a good sign that her practice is doing well) so I will let you know how it goes. It may be somewhat similar to what Pat Allen does to some extent so I'm looking forward to hearing how your treatment goes Peggy. Similiarly, it will take a few sessions.

Be well,

Stacy

RachelC

03-07-2006, 11:20 PM

Hi Everyone -
First, I have to say that although I've never posted on this site before, I have been reading your posts for the past several months, checking in every so often. I, too, have OP. I've only been dealing with it for about 3 months. I had a baby in January and then I stared noticing the pain about 2 months later. My doc thinks that I got the OP from too much ab work too soon (my midwife told me that my abs were seperated at my 6 week check-up, so I started working them like a crazy woman) and not from the delivery because that pain didn't start right away. Do any of you have OP from child birth? If so, when did your symptoms start?

I've been feeling so desperate lately because I don't feel like I'm getting any better. You know, usually when you're sick, you're used to feeling a little better every day. Not seeing any results over MONTHS really gets to you. My doctor says that it'll take 6-9 months to recover. I hope he's right and I WILL recover at all. I keep telling my husband that I want to fly to Australia to see this Pat Allen guy you all are talking about! I can't wait to see how it goes for you, Peggy. But unfortunately I'm in the US (actually in Northern Virginia, outside Washington DC - I think Stacy also lives in my area??) I was very excited to see Stacy's post about rolfing. I've also been searching for someone in the States who does something similar to Pat Allen. I think I may try it. Nothing else seems to work for me. I've tried physical therapy for a few weeks, which seems to make it worse for me. Right now I'm just resting as much as possible.

Lately I've started to notice a weird sensation in my pelvis when I stand up after sitting or laying for a long time. It's almost like a squishing or popping of tiny bubbles. It happens when I walk or move my hips back and forth. Does anyone else have that? Do you have any idea what it is? Is it caused by the OP?? It's kinda scaring me. I hope my bones aren't grinding together or something.

Well, thanks for all of your posts. It's encouraging to read.

Sorry this is so long. I started out with the intent of a quick post.

~Rachel

Stacy

04-07-2006, 03:36 AM

Rachel,

Hi--so sorry to hear about your OP. We all know the frustration you are feeling. I live in Northern VA, in Arlington and will be happy to give you the name of the rolfer I am going to at the end of this month. I have another prolotherapy session in a week and I'm hoping it is the last one. I also get that really weird crunching/popping thing along my groin and pubic bone. It doesn't really hurt, it just feels and sounds really disturbing. I don't think it's the bone, but mostly cartilege and tissue shifting.

Drop me a note in my personal email if you'd like and perhaps we can exchange numbers since we are only miles away. We can talk more about treatment options and such. It's been a year and seven months for me but I do know that I am getting better and hope for a full recovery. My OP is sports related so not being able to exercise has taken its toll!

Best,

Stacy
sstry@verizon.net

Ireland

07-07-2006, 10:22 AM

Greetings from Ireland

I'm so glad to see that some of us are making some headway towards a solution to this life-devastating problem! Below I've pasted three links that I was emailed from the Irish Patients Association... I'd come across them before but for those who are only starting out on this search there might be something in them... they are more sports-related!

http://www.emedicine.com/pmr/topic92.htm
http://www.emedicine.com/sports/topic90.htm
http://wwwmed.umich.edu/1libr/sma/sma_osteitis_sma.htm

Re the earlier question from 'RachelC' re when diagnosed with post-natal OP... I had symptoms pretty much straight after giving birth, whilst still in the maternity hospital... but was only diagnosed 22 months later - which was last November! Regarding what the doctor said about your OP being from too much ab work too soon and not from the delivery... I'm not so sure that the question of potential litigation wasn't influencing his opinion!?!

One piece of advice I'd give anyone trying any of the treatments we've all mentioned... give them time! I had physio up to three times per week from November to February... I made some progress with this and only gave it up when both the physio and I felt that my progress had totally plateaued.

I've been having acupuncture and taking Chinese Herbal pills from February to now and ongoing. Firstly twice per week and now only weekly... its a 100-mile round trip and I need to be driven as I can't drive that far...!!! But, slowly and surely I am making progress... I'm no longer in constant agony like I used to be! Don't get me wrong... I still need crutches to walk/climb stairs and have pretty constant discomfort... grinding pain... pulling of my tendons either side, etc. but nothing like as bad as before!

I finally got copies of my flamingo view x-rays (through the Freedom of Information Act) and also a letter back (through my GP) from the previous orthopaedic surgeon I saw last February. I've been told that "The degree of mobility at the symphysis on flamingo views was approcimately 3mm" - this is also referred to as 'vertical instability'. In an email I received from Mr. P R Williams, Consultant Orthopaedic Surgeon at Morriston Hospital in Wales, UK who authored the article on 'OP - when non-operative measures fail' - he stated: "a vertical instability in excess of 2mm of the pubic symphysis would be considered excessive."

From what I've ascertained, it seems that this 2mm is a benchmark figure ... if the vertical instability is less than 2mm it should settle with 'conservative management' or non-operative measures... but for any of us with vertical instability over 2mm seemingly it's a whole other ball-game. The two sides of the pelvis can only move up and down more than 2mm if the joint is 'worn out'.

Anyway... whilst I still hope and pray to avoid surgery... I'm off to Dublin on 24th July to see a new ortho surgeon who's operated on about 20 people, mainly women! Here's hoping for some more news.

Lastly... I know it seems like a mad idea... and I did jokingly suggest it before... but would anyone consider contacting Oprah or any other famous female TV personality to get an in-depth programme made on this condition, treatment options, causes, etc. Whilst none of us will die from this condition it certainly does kill off any quality of life you might aspire to having. We really could do with an international lobby group!

Sorry the post is so....ooo long. I've been reading all your posts from time to time, but rarely get time to reply!

Keep well. Take care... Regards, Luz

Helen

07-07-2006, 09:44 PM

Hi Everyone

Found this site today, so thought I would join. I to have had op for 6 years now. Seeing drs etc with no help. One orthopedic registar told me dont' worry it will get better, but I was originally told that it had got worse since having x-rays 4 years ago when i had hip pain and was told nothing was wrong. Anyway after painkillers, physio and steriod injection which none helped. I went back to my GP and got myself referred to a pelvis consultant in Swansea (Wales) Who I saw last December after x-rays was diganosed with op and was told my only option was an operation or to try physio again, i decided to try physio as i have to boys aged 6 and 4. I then saw the consultant again in march this year( physio had not helped) and it was decided that i would have surgery. Well it is now july, i had surgery 2 weeks ago, which involved bone taken from my left hip, grafted on to my symphysis pubis and a plate bolted on top. Well i have to say i feel great. Yes the op was painfull but i went in with an open mind on the pain, and the pain now for me is nothing to what i was having before. i am only taking paracetamol now, but i have to take warfrin for three months to prevent blood clots. I am on crutches for three months but that is nothing compared to being in pain for 6 years.
I was very scared about surgery, but am now so pleased i had it. It may not work but at the moment i feel that is has, so hopfully i am now on the road to being pain free!!

I hope this may help you. I will be seeing my consultant in two weeks having x-rays first, so will keep you posted on my progress ( if the op has worked or not)

Take care all of you

Helen

Peggy

11-07-2006, 10:14 AM

Hiya ladies,

gee Helen it's great to hear you feel great after 2wks. The surgery you've undergone is what was recommended to me, it sounded so horrific at the time that I put it out of mind...way too scary to consider! But your story will surely be a success story given the relief you're already feeling.

Welcome RachaelC, my OP started following the birth of my 2nd child, it came on 3-4mths after. My abs were still separated 2yrs after having my son. A new physio who knew what she was dealing with noticed it straight away. Doing simple exercises helped to bring them together, but not fully. It's doubtful that they will ever return to normal.

The key is finding professionals that know how to treat THIS condition! That have the experience and know what they're treating. Not long now ladies, I'll be seeing Pat in 2wks now......fingers crossed it's been worth the wait. You know seeing this pilates physio is definitely helping to keep the OP under control & able to live with, but I don't feel that it'll ever be cured. So that's where I'm hoping Pat will be of help to me. Cause like all of us - I've had enough! I want to walk long distances, I want to run, I want to bike-ride.....I want normality!

Take care all,

Peggy xx

vitt

11-07-2006, 11:28 PM

hey peggy

good to hear that you are online....I have been doing the physio too and benefit from some more strenght, but not managed to get completely over with it....I am due to go back to rome in days for more of these injections...hopping the second round will bring some benefit, but the doctor there seemed to insist with the physio and he reckons that's an important part of it all....

cant wait to hear from you about pat allen, I shoudl be coming back to oz in september, so worth the wait if you manage to get some good results with him. I mean I do like to think there are still some options for us out there, including surgery, think that may journey of alternative trys is coming to an end...I also oreder the wei patches to try in the next weeks so will let you know, but my problem is mainly of a tendons nature.....

so go peggy and pls stay in touch, hope all comes clear for you. Like you I cannot wait to go back to a normal life......it just feels like a dream to me now.

bye vitt

Peggy

12-07-2006, 01:28 PM

Thanks for the encouragement Vitt!

Hey girls, has anyone found a particular sport that they can do with this condition. I'm once again putting on weight & it's getting both frustrating and depressing. Anyone found an activity that doesn't seem to aggravate the condition???

Anything? Peggy

Stacy

12-07-2006, 10:45 PM

Hi everyone!

Good news to report. I had my prolotherapy yesterday and it may indeed be my last one. After 3 sessions in the groin, hip and pubic bone I am about 70% better. (I had 5 other sessions in my SI joints and pubic bone but the groin was key) Prolotherapy came after seeing 6 other doctors with no improvement--everything from cortisone to anti-inflamms, physical therapy, etc.! I actually walked for over an hour the other day and only felt some discomfort! My prolotherapy did not hurt very much yesterday because as you get stronger, the areas are not as sensitive so I made it through with minimal groans. I know it does not sound appealing to get injections but it worked and is working. I have reserved excitement but I will keep you all posted. I couldn't get out of bed without severe pain a year ago so this is amazing. It is a matter of sticking with a therapy until you reach a turning point. I almost stopped a while back but am glad I didn't. I am also planning on trying the rolfing and learn about gentle exercise and stretching so to never let this happen again.

Peggy, one of the things I tried even during a lot of pain was the elliptical trainer. Just slowly and not on an incline. If you start gently and warm up your muscles, it was tolerable. I tried swimming and that was very irritating and biking was out of the question for me. I am so excited for you about your upcoming visit to Pat Allen. Sending lots of good thoughts!

I'll keep you posted on the results of the prolotherapy as time progresses. Glad to hear options are working. We all deserve research awards for all the work we did in learning about it!

Best to all,
Stacy

Liz

12-07-2006, 11:38 PM

Hi Everyone
Helen, I am sooooo glad to hear from someone else who has had the surgery and is thankful they did. I am going in for my 1 year check up with my surgeon on Friday and I know that it will be good news. I just wish that everyone else on here would be able to feel the way that we do. Maybe it's because we both suffered for 6 years and were willing to take the chance. The recuperation is NOTHING to what you go through before hand. I went camping with my family this weekend and went swimming for the first time in 2 years!!! Peggy, as for what sport to play , the answer is NONE! You have to let your joint rest. It will never get better without it. I know it's hard but everytime you move that joint you irritate the inflamation in the joint and you undo all the rest you may have just given it. I know that some of the treatments recomend physio etc but from everything that I have been told, read and heard, that is the case. Anyway, good luck with the recuperation Helen. I have to get an x-ray tomorrow and barring the fact that the plate has somehow moved from the joint down to my ankle or something, things should be fine. To those of you who have just been diagnose, yes, some of the specialists I went to also said that it could go away on it's owna nd would take about 8 months to 1 year. If it hasn't by then, I'd say it is more serious and you need a more aggressive course of action. Please don;t be so afraid of the surgery. Other than the normal surgery risks, it isn't that bad.
Liz

Liz

13-07-2006, 12:00 AM

Hi Again
Just a quick response to the weight gain concern. Yep, it turned out to be a huge sideaffect for me. Unfortunately, through genetics and not being able to do much for 2 years and absolutely nothing for the last year I am now the lucky recipient of an extra 35 pounds!!!! Definitely not a gift that I relish but will most assuredly return it bit by bit. It was a small price to pay for what I have received in return. Don't worry about it that much. It will go when you settle the problem
Liz

Ireland

13-07-2006, 12:29 AM

It's really great to have more new people joining the forum... the more opinions and experiences to compare and share the better. And a special welcome to Helen from me... it's great to have someone join who's living nearer to me... I live in south-west Ireland - in County Cork... but I'd be more than willing to travel to see the right person - I'm off to a new surgeon in Dublin in a couple of weeks.

I have 1,000,001 questions for you... I had contact with Mr. Paul Williams in Morriston's Hospital, Swansea who wrote the 'OP - when non-operative measures fail' paper... was it him you had surgery with or someone else... perhaps Mr Ian Pallister...? what hospital in Swansea...? what else had you tried first...? do you know how many millimeters of vertical instability there was in your pubic joint...? Had the surgeon operated on many post-partum women with OP before...? Were you ever in contact with the Pelvic Partnership...? Whereabouts in the UK are you living...? You get my drift... I want to know everything...! If you'd rather not have all your details on the web feel free to contact me directly on luz@eircom.net

I'm really beginning to agree with Liz and am considering the surgery as more of an option than before... I'll just do as much research as possible first to ensure I get someone experienced. Like all of you I'm getting sick of all the things I'm 'not supposed' to do. By now I can more around more than before... but in some ways it makes it harder! Previously I couldn't do most of what I wanted because the pain was so severe... now I can do a bit but I then pay for it later because I'm so sore and much worse off! It's hard to be so disciplined and have to say 'no' to the kids requests to go to the playground, beach, etc!

About the weight question... I too gained lots of weight over the first 20 months post-partum... then managed to loose about 3 stone (over 40 lbs!?!) over the last 10 months. Initially it was due to loss of appetite from being in constant agony - I had a knock to my head last September and the OP became very acute! But more recently I'm trying to keep it off by eating the amount someone with my (extremely low) level of activity needs, which includes eating smaller portions of carbs. I was also recently recommended a good book called "The eat right diet" which is about eating the right type of foods for your blood group. I also try to avoid foods that are know to aggravate arthritis, e.g. potato, tomato, oranges, rhubarb, sorrel... and also foods that act as calcium inhibitors, e.g. sweet peppers, courgettes, aubergine...

Any more suggestions out there...? Keep well and keep posting!
Luz

Liz

13-07-2006, 03:16 AM

Hi
Luz how great for you to have Helen so near! It must really give you a bit of a lift to know that there is someone relatively close that you can ask questions. And good for you for taking care of your weight. Mine was unfortunately partly related to a tendency to gain VERY easily and the fact that I was so depressed for a while because of all this. I dropped some this year by watching what I am eating but I am NOT going to stress over it just yet. I have too many things to celebrate with feeling better that the weight is NOT going to drag me down. I love to walk so when I get the ok, I will start agian and the weight will slowly go. Anyway, remember, there is light at the end of this crappy tunnel!
Liz

Helen

13-07-2006, 06:38 PM

Hi everyone especially to luz. Where do i start to answer all the questions from the beginning, so here goes.

Firstly 4 years ago had x-ray for painful hip via GP, was told it was normal but I now know that it said that their was very doubtful sclerosis of the symphysis pubis. So I left it for years just coping with the pain. I was lucky in a way that my pain used to come and go so would get on with my life and try to cope with it when it was painful. January 05 it started to become more frequent and very painful at times i would have to crawl up three stairs to get to my children. I was on the sick from work and went to my GP who said I had sciatica deep down I knew differently so persuided the matter to be seen by a local ortho consultant who x-rayed me and told me I had symphysis pubis dysfunction and woluld need an operation or could try a steriod injection. I went for the injection, but it had no effect what so ever. When I went ack I saw the registar not consultant who told me, don't worry it will get better and that was that, so i left a bit confused. I sarted to look on the internet and reading about it and op and started to realalise that things would not just get better, well after 4 years i knew they would not. I referred myself to physio but nothing worked. Because the pain would come and go I am sure physio did not really belive that i could be in so much pain at times.

Comming out of physio one day i saw an A&E consultant who i knew and asked why i was limping. He told me i needed to see a pelvis consultant in morriston hospital Mr Ian Pallister, so i got myself referred via my GP(who did not know he exsisited).

I only waited 4 months for outpatients. Had x-rays flat and standing on one leg and he told me i had op and needed a operation and explained about it. It was very scarey so we decided to try physio again and i would see him again in 6 weeks, anyway physio did not work and after reading more on the internet(had not found this site) i started to realise that maybe an operation would be the only option. So when i went back to see him last march it was decide to have the operation in june this year. I am a staff nurse myself and was very scared about the propsect of having the operation, we always look at the bad side of things not the good, but i decided that why do other people have operations if it is not life threating it is because of pain and quaility of life. I am 32 what is 12 weeks to the rest of my life, so decided it was the best thing to do. It was not guarenteed and he may have to fuse my back in the future. He has done it twice on a lady before and the second time worked.

I did not know the amount of separation i had but trusted him. He is a very nice consultant someone you feel you can trust and will tell you the truth. Whilst in hospital i found out that he takes patient from around the uk that their operations have failed. He only takes trauma which involves the pelvis so has no waiting list. but does not take private.

I live in west wales only over the water from you. I hope this has helped. sorry it was so long just thought would give you chain of events. I am seeing him again on monday with x-rays first, so will let you know if the operation has been a sucess. I feel good at the moment so hopefully it has. Im just a little afraid im doing too much (bordem) But it proves i am feeling so good. I am not taking any painkillers just on crutches and having physio( not sure about physio though, she did not knoe what op was)

Take Care if i havn't answered all let me know

Helen

Ireland

14-07-2006, 10:42 AM

Liz... Thanks a million for the post - really appreciated it - especially the honesty about feeling depressed for a time! Such a big deal has been made here of my feeling depressed... but I sincerely believe one would have to be totally insane to be going through what we are and have been through and not be somewhat depressed...!?! L x

Helen... I can't thank you enough for writing all those details down... I'll take a while to digest all the info you've given me and I'm sure I'll come up with more questions for you. When you're at Ian Pallister on Monday I'd love to know if he could or would see someone from Ireland... I'm sure you'll have loads of questions of you own... but if you could possibly get his (or his secretary's) email address or phone number, I'd greatly appreciate it!

A word of caution on 'doing too much' - really do try to take it easy! I don't know if you've been in touch with the Pelvic Partnership... I spoke to a woman in London and she stressed how important it is to take it easy post-operatively as NOT doing so greatly increases the chances of things moving even ever-so-slightly and of subsequently developing problems in your SI joints. Also the other woman I know here in Ireland who's had an operation for her OP 2 years ago was told to mobilise early and has had no end of trouble since... they're now considering taking the plate out!?! I don't mean to scare-monger... but, please do take care!

Contact details, in case you don't have them: www.pelvicpartnership.org.uk
Tel: 01235 820 921

Best of luck to you both with your upcoming appointments.
Take care and keep posting!
Regards, Luz x

Helen

14-07-2006, 06:02 PM

Hi Luz,
Thank you for your word of caution, I need to keep telling myself to take it easy and telling myself that if i don't things could get worse is a good thing.

I will ask Mr Pallister on Monday and let you know.

take it easy
Helen

Liz

14-07-2006, 10:56 PM

Hi Everyone!
Just got back form my one year check up and thankfully...everything is a go. I can now start taking baby steps ingetting my core muscles built up agian. The plate is where it's supposed to be and my bone density is now getting back to where it is supposed to be.YAHOOOOOOO!!!!!! I do have to still be carefull not to do too much too fast but at least now I know tht things are going well. What a relief. I did ask my surgeon about some of th treatments that you all have mentioned and he did mention again that this is such a rare(?) diagnosis that doctors just don;t have much data to go on. I was lucky in that he interned with someone who had worked with a specialist in Berkley, California who had had some experience with this. Otherwise, he tells me, he would not have had much info either. He also re-iterated to me that he had to do a lot of thinking about actually doing my surgery for the simple fact that it is still so rare to see a case. Most doctors will never see one. I told him point blank that if he sould see soemone who has had it for as long and as bad as I did, please recommend it again. Will I ever run or play baseball again? I don't know. Do I care? Not really. I can walk. I can garden. I can work out a bit again. If I ever am lucky enough to hav grandchildren, I will be able to get down on the floor, play with them , and actually be able to get up again. I think it's important to look at what my life was like before and after the surgery. Is it better? Heck YES!!!

Please take it easy you guys. None agitation for the inflamation in the joint/bone is the key. EVERYTIME you move it, you hurt it. It's that simple. EVERTIME! You can't even cross your leg without hurting the OP. THat's why the plate on the joint works. You are no longer moving the joint thus allowing the inflammation to go away. It has nothing to do with your muscles, your core..anything. My x-ray showed that the inflammation is gone!
Good luck everyone. I'll keep checking on to see how you are getting along. I did also ask him about treating out of country patients and he did say it was always a possibility. I also asked him about receiving / replying to letters about this condition. HE said he could probably do that.

Talk later.
Liz

vitt

15-07-2006, 01:06 AM

Hi everyone, and welcome to helen, I am glad that there are some more info to be shared on here, and that we are coming up with names of doctors that have experience in what we need….

Helen does your doctors also deals with groin problems like tendinopathy of the adductors etc, think you could ask him pls? and also could he look at a patiente from italy?…I would imagine so. it could be another option….

Luz what about the surgeon in finland, I know it's trip but that surgery is so much easier.....would you consider that

But I am so happy to read about some greet success stories, really I am…I guess that if you choose a good surgeon why should anything really go wrong. But the recovery is so important, do it by the book pls…..

I seem to be getting some results with the physio in terms of strength but still suffer from the pain of the inflamed tendons, a lot less then before after the injections but still there, hopping on another round of injection in the next week…..

Good luck to all of us, thanks liz for the positive note…and availability, hopefully something should come up soon

Peggy

15-07-2006, 09:37 AM

Hiya Gals,

thanks for the info, it does offer some further reassurance. However Luz I agree with Vitt, isn't it worth considering the procedure in Finland? given that it's less invasive & a quicker recovery?

It's so damn frustrating, how do you know what is better for you? The Finland surgeries were done on athletes who had OP for the short-term, whether that will be as effective on us long-term patients is another thing. Perhaps get in touch with him, he may want to look at mums next to further his research....but then whether you want to be a guinea pig is another thing again. Although I think you are one whichever way you go, given the little knowledge they have of OP. The surgeon I visited for my OP was head of surgery and I had very little confidence in what he said. When you consider all the surgeries he's performed and witnessed; he had very little knowledge of OP (in my belief). They don't know enough about it.

Gotta go, the kids are at my feet, Take care

Peggy

Liz

16-07-2006, 10:30 AM

Hi Everyone
You're right Peggy about the frustration thing. It's hard to imagine that the head of surgery wouldn't know about OP. but then, my doctor told me that he will probablynever see another case and most of his colleagues would never see one!! When I think how quickly my family doctor diagnosed it I guess I was really lucky. He really thinks that for conditions like OP where there is so little info, the Net might be extremely valuable. Someone needs to start collecting data for the medical world. THere are more than just us few out there that are suffering with this contition. And we ALL know how excrutiating it is. Helen, please take it easy with your recuperation time. My surgeon told me it would take at least 1 year before I could even think about using my ab muscles and now it will be another year before I will be able to do everythng I used to. Keep being thankful for the change in your life. It will continue to get better. I am serious when I say that there is not a day that goes by when I do not thank God for giving me back my life. Last year I was almost in a wheel chair and this year I just came in from planting flowers in my garden..kneeling and being able to get up!! ( Of course, no one needs to know that I did use a wheelbarrow to move some heavy bags if soil!!) I know,,my huband already got cross at me! Keep the faith !

Liz

Stacy

17-07-2006, 12:43 AM

Hi all,

There are some great words of wisdom in the previous posts! To keep it short and simple...baby steps! I was feeling better and stupidly over did it a bit in my garden yesterday with bending, kneeling, pulling. Suffering the consequences today. So yes, indeed, even if we are feeling a bit better, best to take things slow. I share the frustration about weight gain and feeling down so the minute I feel like I can do something, I push it. I think about how much I miss being active. But, the weight will still have to wait. Hang in there everyone.

Best,
Stacy

Helen

18-07-2006, 04:39 AM

Hi How are you all?

I saw my consultant today 4 weeks after surgery. It was very interesting to see my x-rays with the plate in. It looked massive, but i know its not. He was very pleased with the recovary so far. The bone graft has started to slowly heal, which i could see on the x-ray. i have to stay on the crutches for another 8 weeks and he will see me again after that.

Luz... I told him about you and this web site and about how many women were finding so many problems with being diganosed etc with op, he was very interesed and if had time was going to look on the web site. He said he would see you luz, but was not sure how it works with the nhs seeing people from other countries, but he said if you get your GP to write to him he will look at how it could work.

Address Mr Ian Pallister Morriston Hospital, Swansea NHS Trust, Morriston, Swansea. SA6 6NL
I hope this will help you. Keep me informed as to how you get on.

Vitt... I'm afriad i did not read your note untill this evening after being to see Mr Pallister so sorry was unable to ask your question. I do not know what else he deals with only that he is a pelvis consultant. Sorry but maybe you could also contact him.

Take Care all of you
Helen

vitt

18-07-2006, 06:16 PM

hi helen

thanks for the info, never mind, i may just write to him too and see, do you think will he have an email address too pls? that really would be the easiest thing....

well I am glad that you are ok, really good, and 2 months really isnt nothing in compare to what this problem does to you and your life, so well done.

I used to live in the uk many years ago and used to have NHS number and all that, does this doctor also see private patience somewhere, most of them do both....?

thanks again helen, hope to hear some good news soon, vitt

mel81

19-07-2006, 10:09 PM

Hey Peggy,
Just a word of warning with Pat, let him do his work first or hell talk to you the whole time and not get into it enough!!!:D

Hes a great old fella and I hope he can give you some relief.

Mel

Paulie

20-07-2006, 04:30 PM

How are you pulling up mel ?

vitt

21-07-2006, 12:22 AM

hey girls and guys

glas to see that we have some new people on the forum.

I would like your advise if you could, I have been doing physio for the past 3 weeks and have to say that was getting a little stornger....mainly doing stretching and isometric excericeses....then my physio's gone on holiday and left me with another guy that's doing things a little different, he reckons that I need to work mainly on my abs so to stabilies the pubis sympathis and the adductors...

I dont suffer of any pain in my abs, fortunately, i only suffer in the adductor area...but I wonder whether it is a good idea to put strain in the abs area?! i am just scared to make things worst that what they are by following the advise of this guy....

any help from you guys, I think that with everything that we are going throu we probably know more then doctors .....

thanks vittoria

Ireland

21-07-2006, 07:44 AM

Hiya everyone... thanks a million for your posts...! Don't worry... I won't rush into any surgery and I do intend to ask the ortho in Dublin about the Finnish surgery - I'll bring the abstract I have with me... I brought it to the consultation with the last ortho surgeon... all he said was that it's efficacy hadn't been proven! ...and wasn't in the slightest bit interested in finding out any more about it! I'd love to know what other orthos that any of you go to see have to say about it...?

Re your post Liz... and your surgeon saying he'll probably never another OP patient again... the guy I'm going to in Dublin has done 20 surgeries on male and female (athlete and post-partum) cases in the last 4 years - so I'm told!?! And Ireland has a fairly small population...?

Thanks a million Helen... I'll speak to my GP about writing to Ian Pallister and see how I get on... I'd really appreciate another opinion!

Glad to hear that you both got on well at your 1-year / 4-week check-ups! Baby steps!!!

I've started with a new acupuncturinst who's only 5 miles away (the last one was 100-mile round trip!) and hopefully I'll continue to have some benefit from that! Take care everyone and keep posting.
Luz

vitt

25-07-2006, 07:00 PM

hey peggy

whe are you going to see pat, should be about now, cant wait to hear from you, get in touch soon. love V

Liz

25-07-2006, 08:57 PM

Hi THere!
How are things going for everyone? Luz, just wanted to comment on the fact that your doctor has done a number of operations in Ireland. I think probably the fact that the population of Ireland is about 4 million and the population of Prince Edward Island, where I live, is about 138,000. There is a big difference there.! Also, what happens is once a surgeon does this operation, he tends to be someone that others refer patients to. I certainly don't mean that we are all that unique but rather the diagnosis is a bit rare and the treatment is fairly uncommon.

Liz

Peggy

25-07-2006, 09:57 PM

Hi all,

I went to see Pat Allen today, and it looks promising. He is 95% confident that he'll be able to cure me. I have typical Osteitis Pubis, it was hurting in all the right places. I had about half an hour of treatment which was a little painful, but nothing in comparison to the pain we feel most days.

He said I can expect to be sore the next couple of days because we've been working with an unhappy joint, but soon after should notice a difference. After another 2 sessions I hope to be a new/more functional person.

I have confidence in what he spoke about, and he has worked with many elite athletes with great success. He's been treating OP for over 20yrs. Fingers crossed he WILL cure me.

He is VERY BUSY.........bookings 8wks ahead.

I'll let you know how I'm going in a few days time.....Peggy xxx

Peggy

25-07-2006, 10:04 PM

Stacy

27-07-2006, 09:57 PM

Peggy, that is amazing news. It has been a long road for you. How many years have you had this?? I'm excited that you have confidence in the process and am eager to hear how things work out. Best wishes!

Hey Vitt, regarding your question about ab work. I have been told that core stabilization is very important but not through typical situps. Supposedly, that motion is very bad for the body, particularly OP. My physical therapist had me doing pelvic tilts where basically I squeeze the stomach muscles and sort of press down into the floor. It's hard to explain but simple to do. I went to my first rolfing session and she agreed that situps and too much ab work is actually bad for the overall structure of the body. That's what I have been told but then again, stories change depending on which doctor I see!!

Best to all,
Stacy

vitt

28-07-2006, 12:21 AM

hey stacy

I feel the same as you, i am not sure int doing them, so I havent...got to follow the instinct too on these things. I nkow what you mean by pelvic tilts tho, I used to do yoga many years ago....

what did the rolfing say then? what do they do?

bey stacy, hope that works for you.

Peggy

28-07-2006, 09:18 PM

Hi Stacy and Vitt,

Yes I must say I was ecstatic when Pat confidently said he could cure it for me....but I am being cautious and taking it one step at a time. I have suffered this for way too long (over 2yrs 3ths), and nothing about it is easy I know that for sure. His approach is very different to everyone elses I've seen. He doesn't agree with resting it, which I am starting to agree with.....some days when I have rested and I get up to do something I can be worse than when I sat down to begin with....and you know I can't say that any of the doctors/physios have an answer other than to manage it and when it gets too bad operate (almost a cop-out for not researching OP further). I am definitely going to see this through with Pat.....he's had the best successes with OP so far........have you heard of anyone curing it??? Other than surgery that is?

I'm feeling better today. The last couple of days were tender for me and my right hip was very clicky. It has settled down today and I'm surprised how good I've been, considering the hectic days I've had. Between kinda runs, birthday parties & shopping trips.....I'm doin okay. Pat did not tell me to rest, he said carry on as normal and continue the exercises as I usually do.

You know what frustrates me the most???......he has tried to let the medics know about what he does, so he can teach it and make it available to others.....they don't want to know! I say why the hell not? Even if it helped 1 in 5 people, why not look into it......research it.....it may help people from having to suffer unnecessarily!

Peggy

vitt

28-07-2006, 11:37 PM

hey peggy

that sounds real good, does that mean that you can feel some benefit from pat already? do you feel better then when you went to see him then? that would be alsome....

yeah maybe it would be interesting to see what happens if we try and have a more normal life, whether we may be able to cope.

I heard that the only other person that has managed to cure OP is garry down in melbourne that also does massage, think works similar.

look I think that it all comes down to money really, just think how many people make money out of it, the pharmaceutical company that produce the anti inflammtory, the doctors that do the op, the GPs and the rest...think this is why they dont want get it all down to a simple massage.....

wrong but true, so let us know if you think this is worked already, love vitt

Cannavaro

29-07-2006, 12:19 AM

Just curious as what exactly the massage involves...

Does he loosen supporting muscles such as the lower back and glutes? Or does he focus solely on the groin/adductors.

Very interesting indeed.

vitt

29-07-2006, 03:57 PM

hi cannavaro

my understanding from what paulie said to me, is that starts from your lower abs and works to your knees. Because its all attached to your pubis all of it must be relaxed, but yes he also goes thru your groins.

hope this helps, but you know, I have been trying to go to other people and I dont seem to anything near what this should be....vitt

Peggy

30-07-2006, 07:39 AM

Hi guys,

he did a little work on my lower back, he works with the nervous system that stems from the back, goes around the hips and into the groin area. It was painful, but certainly not unbearable. I can't say if it's made an improvement yet, hard to tell.

I did heaps of work in the garden yesterday, the pain started when I stopped. My husband nagged me to come & help him with something, I got going again & the pain eased. Today I'm feeling sore, but hey I can still walk (which wouldn't have been the case in the past).This goes against the theory of resting......don't you think? Anyone heard of anyone getting over this with rest???

Peggy

vitt

31-07-2006, 08:53 PM

hey peggy

sounds like you have been getting up and about, which can only be good for the soul really.

I am not sure what to say in regards of resting, I remember many months ago I was real bad and the idea of moving was just unbereable, so I decided to rest, but even that didnt really sort it out, it only managed to get all my leg muscles weak and so creates other problems I guess, it is really an hard one cos it does get you phycologically too, you feel the pain and get scared to move cos it is just going to make worst.....which it doesn mean that it is the right thing to go.....

I have an6ther question for you guys, I ma totally confused in what the right thing to do between stretching or strenghtning, basically some physios have been telling me that it is really important to stretch the adductors before any strenghtening, other have said that stretching is only going to make things worst cos you keep pulling, and so to just focus on the strenghtening....does anyone have a good experience with either pls?

that's all. hope we are all moving along in a way or the other. love vitt

Ireland

31-07-2006, 10:02 PM

Thanks a million Peggy etc for posting your notes of caution re surgery... I enjoy the posts that challenge me just as much as those that 'support' me!

I went to see the orthopaedic surgeon in Dublin last Monday and was sent for a Tc-99m bone scan on Tuesday and a CT of my pelvis on Wednesday... so a busy few days! He had a chat, physically examined me and had a look at my x-rays... then stated that it looked like I'd had a spontaneous symphysiotomy during childbirth, which hadn't healed. Also said he wanted me to have the above 2 tests done before deciding on a course of action/treatment - which seemed reasonable to me, I'd always rather measure 10 times and then decide if you want to cut at all! He didn't go into his success rates, but he did state that the surgery isn't always successful and even when it is it doesn't always 'cure' the pain as it's not just the bone that's involved!

The bone scan showed up a large 'hot spot' over my symphysis pubis - where my body is trying to heal itself! The radiographers who did the CT of my pelvis said there was a gap between the two ends of my pelvis (where the cartillage should be!?!) and "lots of bony destruction" at either end of the pelvis! Doesn't sound good! I've to go back to him on 14th August for another consultation (where he'll have the 2 scan results).

While the ionising radiation from the bone scan was wearing off I tried to walk around Dublin (avoiding children & pregnant women)... had my hair cut, long lunch, etc! But despite trying to take it easy, on Wednesday I could barely walk - lifting my feet to move them was exhausting! This is NO life for anyone!

I don't have a clue what's next, what I should or shouldn't do... but I'll pursue each avenue of information/treatment to the end before I decide anything. I know the woman I spoke to in Pelvic Partnership UK stated that the surgery is frequently unsuccessful and that mobilisation too early is "disastrous" - she recommended 3 months bed rest post-operatively!

Has anyone else had the Tc-99m bone scan or a CT of their pelvis - if so, what did they show up? Take care & keep posting! Thanks a million... Luz

Mayamki

01-08-2006, 12:07 AM

Hi to all,

This is Amanda from malta unfortunatly my husband was diognised with osteitis pubis last may he did a bone scan test and this was bositive to osteatis pubis. due to the fact that he is a soccer player this was more of a sock since specialist told us he has to stop for i year. this was the end of the world to him and me too. let me share our story woth you. he first felt it while he was training soccer with his club he felt a groin pull. and tha's what he tought it was a t first. he told me ok i know how to deal with it, but few weeks later he was still feeling pain in the groin area and also he felt that the pain what going up. to his left lower abs. we then decided to visit a sports medicine doctor, he gave him some antiinnflamatory and told him that he cool rest for some days and could strat slowly training.
At first with this antiinnflamatory he was no feeling any pain and thouht it was over. and he kept on playing feeling a bit of pain and ignoring it. this was in Oct/Nov 2005, then he sugested he should do a bone scan to make sure this is not something from pubis area. we did it in may 2006. and bone scan shows it was positive to osteitis pubis. imflamation obviously was still there. We this dr suggested a phisio therapist which we found realy helpful. she explain to him that his problem was that his tighs where to strong compared with his abdominal muscles and lower back muscles.
She suggested core exersice and believe me this worked miracles just in few weeks Pain was no longer there + we run a esr test (Blood Test) just last friday and today got the results. Results showed that he has no immflamation his levels where normal. that means that inflamation is already gone, and today he has to start walking 10min + jog 5 min walking 10min. We'll see I really hope he will get better very soon. I would suggest to you to really believe in core exercise it really does work i promise if you tried everything please try this i hope all of you u have been dioognised with it. should heal immediatly.

love peace to all

Amanda

vitt

01-08-2006, 01:19 AM

hi amanda

thanks for the story, can you pls tell with more details what kind of excercises does he do? I have heard a lot about core strenghtnening but not sure how they are done, thanks

Mayamki

01-08-2006, 06:56 PM

it's a bit diffcult to explain this with words but i'll try. first exercise it this you have to push back buttocks and push infront. Second exercise you have to lay flat down on the floor and pull legs,hips, spine upwards leaving sholders a head flat on the floor 6 times. 3rd exercise lyaing sideways bend knees backwords make sure that your ear,shoulder,hip, feet are straight lined open left leg slowly and close it for 10times do the same on the other side it's veru important to bread correctly trough all exercises. i hope u understood what i meant by it. how u get well soon good luck. if you need something just let me know.

regards

amanda

Mayamki

01-08-2006, 07:03 PM

2nd exercise your spine has to move exactly like catterpilar curl it from bottum to top part of the spine.

vitt

01-08-2006, 09:40 PM

thanks amanda

in the first excercise sounds like a pelvis tilt, do you need to be on the floor?

the second seems clear, and on the third do you open the legs like a scissor, so in front of you, or open outwards, so on top of you pls?

one last thing, was your husband told to do stretches? I am unsure whether it is a good idea to stretch or not, sometimes I feel worst, thanks hey will try these when I get a reply from you.

vitt

Peggy

02-08-2006, 07:45 AM

Hi all,

I agree with doing the exercises. I improved immensely from doing the core strength & stability exercises. I found an improvement as long as I did the exercises daily....when I didn't do them I was punished by the pain! I was very bad when I first started posting....since then having started the pilates (working on my core strength) I have come a long way. I would never have imagined that I would come this far with doing such simple exercises....particularly when the surgery was recommended to me as my next course of action.

Take care,

Peggy

Mayamki

02-08-2006, 04:33 PM

Hello All,

Vitt I'm so glad you almost understood what i meant, my husband doea all exercises on the floor I think is better to be on a hard surface so you will have more controll of what you are doing. 2nd exerice is the most difficult one lay flat on the floor and pull your feet buttock lower spine stop on shoulder upwards, if you can try to hold your breath while you are on top, then as long as you come down slowly Caterpillar motion breath out try to concetrate on holding your breath down to your lower abdominal part.

That is what's all about you are training your lower abdominal muscles tendons joints so they will be strong enough for your daily routine. Vitt I will draw the exercise togheter with the breathing procedure and scan them for you.
It's better like that send me your email address. I will explain tommorow every thing cause now i am at work i will do it tommorow if you don't mind. Listen by the way my husband started slowly 10 min walking 7jogging 10walking he has to get back to full training cause premier league will start with in 3 weeks. he is feeling very good and he said core helped him too in walking + runing he felt so strong while running this is amazing.

I really hope you feel better even more than you where before be patience try to avoid sudden movments, rest and core exercise will help you 95%. Swimming is also very good, well if you need me i'm here my email is amanda.darmanin@di.com.mt.

Best regards

Amanda

vitt

02-08-2006, 05:30 PM

hey amanda

thanks for the offer, I really appreacciate all the help I can get, thanks again.....swimming, I though of that, which style?

this is my email address, vmomento@hotmail.com

I am in italy by the way, thanks hey vitt

Mayamki

02-08-2006, 10:30 PM

you should fine some where not too deep so that you could walk in the sea/pool. just that and maybe you can stand on the side of the pool and slowly moving your legs. try to by a stabilizer so that you could moitor you breath keith has one it should be like a small cucion which u put under your lower back while being flat on the floor and with a small pump, pump it till u get it on green arrow which is 40 then exercise on breathing try to keep on the 50 line which normally should be red.

see you tommorow i'll send you the exercise scan on your email
by the way I'm From Malta>
Good luck

Amanda

Mayamki

04-08-2006, 12:20 AM

vitt

How are you? I sent you the drawing of the core exercises by email please check your e-mail. until next time i hope you'll find them good for you.

Best Regards

Amanda

Ireland

05-08-2006, 08:45 PM

Amanda,
Any chance you could send me a copy of the exercises your husband is doing... my email is luz@eircom.net (I'm living in Ireland.) I'd be very interested to know if they're anything like the ones my physio had me doing. Thanks a million!

Helen,
Haven't heard from you in a while... how are you getting on? Did you ever make contact with the Pelvic Partnership? ...either before or since the surgery?
Did your surgeon send you for a bone scan or a CT of your pelvis before surgery? Or did he just go on the x-rays...? Hope you're well and do keep posting!

To everyone...
I know that the biggest question I have on my mind regarding OP at the moment is "Is there any risk in my NOT having surgery now/sooner?" That's what I asked the surgeon in Dublin... he wouldn't even attempt a reply until I'd have the scans - I go back for the results on 14th August (I'm not even certain if he'll even have an answer then!) I know I've been told that with the level of vertical instability I have that it's inevitable that my Sacro Iliac joints will come under pressure over time... but how much time...!?! Anyone else have any info on this? What has anyone else been told??

Keep well and keep posting! Best regards, Luz

Helen

08-08-2006, 07:25 PM

Sorry haven't been in touch, with the children off school its hard to get time to go on the computer. When they go to bed i just want to relax.

i'm still feeling good, i get pain at times but nothing compared to before the operation. i'm going to physio in a nice warm swimming pool which is lovely and normal physio. Probally doing to much at home which is my own fault (disapline is very hard for me)

I never contacted the pelvic partnership, i have felt trust in my surgeon (dont no if good or bad thing) so have followed what he has said.

I also never had any scans. Mr Pallister just went on x-rays lying flat and flamingo views. I did see the x-rays and you could clearly see the inflamation and areas of bone that was disappearing, the area that should of been smooth was not and also the movement in my pelvis on flamingo views.

Take care all and luz let me know how you get on with your surgeon and what you decide.
its a hard decision to make, but i feel that even if this operation that i had is not successful, at least i tried something, and i dont feel that i will be any worse off if it does not work, but i suppose only time will tell.

Did you get your GP to write to Ian Pallister, and if so have you had a reply?

Take Care Helen

Peggy

08-08-2006, 11:41 PM

Hi everyone,

Just been to see Pat Allen for my 2nd appt. Boy am I exhausted, the 6hr round trip is a killer, but it'll be worth it if we achieve success. Pat is still very confident he can cure me, my body is responding to the treatment exactly the way he would expect. The treatment is uncomfortable and painful at times, but I'm getting there....it only lasts for half an hour.

Pat & his wife Nelia are absoloutley lovely, they've made me feel very comfortable and come across to me as being very genuine people. He's absoloutely flat-out, which says alot. Pat told me that it can take 4-5wks to really notice a difference.....he's working at releasing the tightness in my nervous system. You know what? A lot of what he says makes sense to me.....having had this condition for "my fair share" and having tried to find out as much as possible......the doctors don't make a whole lot of sense....I believe due to a lot of guesswork....not knowing much.

What do you think?

Peggy

CST

09-08-2006, 04:35 AM

Hi all,
I hold a Bsc (hons)degree in Sports Therapy and work with pro. soccer team in Dublin. I come across OP regularly and find that microcurrent therapy plus core stability exercises of benifit in treating this condition. Of course the OP sustained through sport may not be as extreme as that of child birth but it might be worth looking into.
Take care,
CST

Lena

09-08-2006, 05:30 AM

Hello Stacy, my name is Lena and I to suffer from OP and live in the Washington, DC area. I would love to talk with you more. I hope you don't mind talking with me and if you don't call me at 301-526-0110 anytime. I look forward to speaking with you real soon.

Ireland

09-08-2006, 11:28 AM

vitt

09-08-2006, 04:47 PM

hey CST

thanks for joining in...I think that microcurrent is similar to scenar right? I have a device at home, in which point will you suggest to apply it for OP? yeah and also which excercize you would suggest?

thanks Vittoria

vitt

09-08-2006, 04:51 PM

hey peggy

yeah there will defintely be an nerve involvment in all this, cos pain goes throu the nerves right?

so can you say that you have had some improvement so far? or does he mean 4/5 weeks after the last session? that's quite a bit of time really.....

well I agree with what he says, but for me results speak for them selfs, so you just got to wait til the end, at least there have been plenty of times when I though that it would work and then nothing...hope you feel something in the next few days and let us know, thanks vitt

kjwilkin

09-08-2006, 06:04 PM

Hi all,
I've been informed (via a letter from the Surgeon to my GP) that I have "Reflex Sympathetic Dystrophy" (aka Complex Regional Pain Syndrome) affecting the genital branch of my genital femoral nerve...?!? He did mention something about it the day I saw him... but I'm no good at taking in 'bad news' and thinking of questions on the hoof!

Has anyone else heard of this? It's interesting that Pat Allen is treating your 'nervous system' Peggy...! Having Googled RSD / CRPS I see that it's described as an "overactivity of the sympathetic nervous system" that can affect the "pathophysiological mechanisms"!?!

Helen,
Glad to hear that you're still feeling good, but PLEASE don't do so much at home... try to take the longer view and take the advice of the Pelvic Partnership - REST...!!! Even if you trust the surgeon, which is great, there's still no harm in contacting the Pelvic Partnership!?
I didn't get my GP to write to Ian Pallister yet... I'll await the results of my 2 scans first and see what Mr. McElwain says. My next appointment with my surgeon is next Monday, 14th August...

CST of Dublin,
Greetings fellow countryman/woman!
What is "microcurrent therapy" and what "core stability exercises" do you usually suggest?

As usual... keep well & do keep posting! Luz

Hi there,

One of my friend's has the condition after having major ankle surgery. I was also warned that I may develop it after my ankle reco at the end of January. Luckily I haven't got it.

Basically my understanding is that there's an over reaction of the nerves.

My friend has been told by her ankle surgeon to basically work through some of the pain. It's a frustrating condition to treat, but is a matter of being persistant with your rehab I think.

If I was you I would try and find a good sports physician who can advise more on this condition.

Mayamki

09-08-2006, 10:09 PM

Hi vitt,

How are you ? did you recieve the copy i sent you by email? Did you try to do them? What do u think about it? My husband took a cortisone injection on monday will see, this is the last chance cause if he will still feel pain he would not be able to play in the league. it's a pitty cause he is know laying for a premier league team.

Good Luck to all of you may god be always with you.

Regards to All

vitt

10-08-2006, 02:12 AM

hey amanda

thanks for checking up on me, I have received the email but there was no attachment with it all.....so maybe you could send it again pls?

thanks hey, I am sorry to hear about your husband, hope the cortisone helps, sometimes it does when there is no too much inflammation....otherwise what will he do?

stay in touhc and thanks, vitt

Mayamki

11-08-2006, 11:58 PM

Hi I will be sending the attachment next week if you don't mind cause i am not at work and i have it saved there. I let you know regarding my husband.

see you next week

Peggy

14-08-2006, 07:19 AM

Hi all,

well I'm pleased to say that I'm feeling pretty good. I had my daughter's 5th b'day on Friday, which had me running like a headless chook (had 22 children) and parents.....Now normally that would leave me in pain for at least 1wk after, I'd be doing my exercises like mad to try to cope.....I haven't done any exercises & I feel fine! No pain.

When I saw Pat on Tuesday I told him that I was having lots of headaches and neck cramps. As well as working on the OP he did some work on my arms (would you believe), and I haven't had a headache since. It's got me baffled! It did hurt, the work he did, but it didn't go on for long....so well worth it !

Take care all,

Peggy

Liz

16-08-2006, 12:24 AM

Hi Everyone!
Boy, the site sure has grown since I last checked in. Wow! I just read the last few pages and things are sure moving along for some of you. I am doing REALLY well and am feeling great. I still know if I over do the walking but not with pain but rather with sore muscles. I ended up doing quite a bit of walking last week as my daughter's fiance had a heart attack ( 32 yrs old ) and we had to rush out of province to be with her. Walking back and forth from the hospital to the hotels and restaurants and... We are pleased to say he is doing ok and hopefully not too much damage occured. good luck everyone. Again, when the surgeons downplay the surgery, remember it may be that they don't know a lot about it. It DEFINITELY worked for me.
Liz

Mayamki

16-08-2006, 09:13 PM

hi vitt,

send me your email again please so that i could send you the attachment of the core exercises.

regards

amanda

Sedat

16-08-2006, 10:11 PM

Could you send me the attachment of the core exercises please? I have been sufferin OP Almost 6 Months too.
thank you
sedatsari@hotmail.com

Stacy

16-08-2006, 11:38 PM

Gary

21-08-2006, 04:50 AM

Hi, I am from england. Could you please let me know if there is anywhere i could recieve this treatment, I have had op for 13 years after three hernia ops and one op on my groin. They have now told me i have op and there is nothing they can do for me. I hope I can get this treatment to cure this problem, Thank you.

Peggy

21-08-2006, 09:04 AM

HI all,

Sorry it has been a while since I've been on the forum. Trying to get vacation and visits in before the summer ends. Which is a point of frustration actually. It seems that sitting in an airplane and driving a car hurt more than walking!! Does anyone else experience that? I tried to make a trip last weekend up to NJ (about 4 hours) and got stuck in traffic. The motion of moving my foot from gas to the break became excruciating. How frustrating not to be able to do something so simple!!

I'm glad there is a lot of talk about the core exercises. I actually stopped doing them and when I read the posts, I realized that perhaps that's why I'm not feeling as well as I should so I am back at them. (Since so many people want a copy of the exercises Amanda, perhaps you can just post to the forum...there's an option for attachments below the message box.)

I see my prolotherapist again next week so we'll see where we go. I only had one rolfing session and go again on Friday. Hard to get appts!! It's a process of releiving muscle tension and helping your alignment through deep work. I can't tell a difference after one session but she said after 3 I should notice something. We shall see.

Glad people are moving along but sorry to hear about confusing diagnosis after all this time. It's a mental strain as well as physical. Peggy---great news. He is indeed a bit of a guru. Amazing. I wish we had a clone of him here!

Lena, just saw your note and will be happy to call.

Best to all,
Stacy

Stacy,

I know exactly what you're talking about. I've found that when I'm on the move I'm OK, when I stop, sit down & rest also OK, when I get up to walk after having had that break I'd crumble to my knees in pain, excruciating pain. Which is so frustrating, cause all along we're told to rest as much as possible, doesn't make sense that I would feel worse after having that rest!

Thanks for the encouragement Stacey, I wish there was someone out your way to offer you the help I have gotten. My friends cringe when I tell them I have a 6hr round trip.....but that's nothing when considering the improvements. The medics need to show interest in his work, so it can be better known, so he can share his knowledge & teach his work....sure it may not be the soloution for everyone.......but it has worked for enough people that it warrants further investigation. He has had a lot of media coverage recently because he has been able to help high profile footballers....it's only a matter of time before someone sees the potential and gives him the backing to go far with it. But that doesn't help you guys with this problem NOW!

Take care all,

Peggy -xxx-

Ireland

21-08-2006, 09:49 AM

:confused:
Hi all,
I have to say that by now I'm sick and tired of receiving yet more bad news! I went up to Dublin for an appointment with the ortho surgn on 14th August (more than 200 miles away) to get the results of the CT and bone scans I'd had done 3 weeks earlier. I thought that I had myself prepared for all eventualities, i.e. needing surgery promptly, it being 'too late' for surgery or even not needing surgery and being told that there wasn't much wrong - I can but dream!

Instead... I was told that from the activity levels on the bone scan it appears that the joint is infected! I couldn't ascertain for definite if this was Osteitis Pubis which has become infected or in fact a whole other condition, a type of septic arthritis of the symphysis pubis - the latter I think! I don't think he knows for sure! The next step is that I have to wait until September 11th (a very ominous date) to have a double / triple MRI and I have a consultation with the surgeon later that day! I don't know how it's ok to be going around with an infection left utterly untreated for another month?!?! And when I do go up I've no idea if I might have to be kept in right away... the surgeon mentioned if it is infected he'll have to operate to cut away the infection!

On a practical level, I can't understand why I had to go all the way to Dublin to be told this news and why the MRI wasn't booked as soon as the bone scan results were in (2-3 weeks earlier), given that there is a 4 week waiting time - and that's going privately!!!???!!!

I don't really know what to think, or do, now!?! Has anyone else heard of this? Have any of you had a bone scan done? Any help or info greatly appreciated!

Take care & keep posting! A very dejected... Luz

Peggy

21-08-2006, 10:21 PM

Oh Damn!!!!!

How BLOODY FRUSTRATING!!! Luz I'm really upset for you...with all the damn tests you've gone through, and all the PAIN! This should have been picked up sooner! I agree, those waiting times are disgusting....being private. Keep your chin up & be strong, there WILL be a time that you'll look back at this time and it WILL be a distant memory. You'll get past it! Be strong!!! Keep your mind busy and focused on the kids...if you dwell on what might be, that 4wks will seem like 4 months.

Take care dude, keep strong & BUSY!

Peggy xxx

vitt

23-08-2006, 02:03 AM

hey luz

agree with peggy, it's unreal, I mean how couldnt they get this before, are they sure it is an infection...?

is there a way for you to manage to find out before, I thought they said that it was a nerve problem with you, or both? really quiet unsure what you have isnt it?

could it be worth getting anothe opinion, know you must be over that tho....

keep in touch and posting, lots of love vitt

Mayamki

23-08-2006, 10:36 PM

Hello Everyone,

I hope all of you feel better, I am at work and could'nt help it I felt the need to write something to you. I go through ostetis pubis sites every day every minute I have I read,read,read and read. This is a very painful, frustrating, sad situation that ever could happin to an athelete. To be fare to any one.

I noticed that my husband as soon as he gets backt to the football pitch he's back at it again. he is so down and deppresed I don't really know what else should he do at this point. Football plays a big part in his life not only his even mine. I feel I lost everything with this shitful condition I lost my family my Husband cause he's so diffrent with the rest of us. I sense it and i am not realy happy I now it's painful for him.

We went to 2 specialist 2 phisio's, 4 doctors. and a sports medicine doc. My God what the hell can we do any more this is a nightmare. We runned a ESR Test (Blood Test) which showes if their's any inflammation in the blood. normal result should be 1 - 13 and my husbands results where 3. So doc told us you can say it's over.

Help him Help us Help us!!!!!!!!!!!!

Peggy

23-08-2006, 10:49 PM

Yes Mayamki it is a VERY frustrating condition with no easy answers. Yes it affects the whole family regardless of your circumstances because you can't be your usual self, you are inhibited from doing everything that is normal to you because the pain is crippling. Your mind wants to go go go, but your body can't.

You sound as though you're very supportive of your husband, and really that's all you can do. As you would have read from this thread.....many of us have tried so many different therapies with varying results. So there is no easy answer, given that it's a condition the doctors know very little about.

I wish I could give you the magic cure....I am hoping that's here in Australia (Pat Allen)...time will tell..... When my treatments are over and some time has passed, I plan to go for xrays to get the full results. Although I understand that being 24hrs away...that isn't much help to you!

Be strong and continue being supportive, that's the best you can do for him!

Peggy

Stacy

23-08-2006, 11:45 PM

Hi all,

Luz, I am so sorry to hear about your infection...and amazed that your doctors are not reacting sooner! Is there someone who can offer a second opinion, soon? Throughout this process, I have learned that 5 doctors will look at things 5 different ways. I know it's frustrating, constantly getting tests and going to doctors, but perhaps there is another choice. Whatever the case, try to stay positive and strong. I know it's hard. We're here whenever you want to vent.

Mayamki, has your husband tried prolotherapy? I have just had my fourth treatment yesterday. I am quite sore today, there is no question that it's uncomfortable. But since getting this treatment, I am about 70 percent better. I was very athletic in the past and couldn't get out of bed without pain, never mind run. I know it's frustrating for your husband. I think the challenge is that he could make it worse without any treatment, especially if he's still trying to play.

Prolotherapy has its supporters and others say don't do it. It's worked for me but it's a commitment to the uncomfortable treatment and it takes a long time to work. No quick fixes with this horrible OP. I'm going to stop treatment soon and continue with the rolfing. If you want information on either of these, I can send them to you.

Best to everyone,
Stacy

Cannavaro

24-08-2006, 03:00 PM

I have had OP for 15 Months now and have nearly gotten over my pain and returned to full training. 9 months ago I couldn't even run, 3 months ago I couldn't even kick a ball, today i'm nearly there.

First of all it is my opinion MOST Doctors dont have a fricken clue. For them some anti-imflamatory's and rest is a perfect way to get better (maybe if I had the flu or brusied my ankle), all this is just masking the pain and not realy doing anything to solve it.

The best advice I can give you to all is to focus on the muscles that are not attached to the pubis, i.e. Gluteus Maxemums, Calf, Quads and Lower back. Strengthen and stretch these as much as you can to take the pressure off your Adductor which is the main cause of pubis pain as it radiates the pain up into the pubis. Also, constantly exercising (to a point which doesn't sting with pain however there still is a little pain) is very important. Nobody has ever gotten stronger from rest. Final piece of advice is massage, you dont need to see a proffesional for this, you yourself can do it when you have a free 10 minutes. Work the adductor and lead into the pubis.

Just remember there is always going to be pain and it does take some time, however muscles do heal, you just have to give them what they want for this to happen.

After reading all these different posts it seems to me that people are lost as to what to do. Hope this helps some of you out there.

Regards,

Fabio.

vitt

24-08-2006, 06:03 PM

hey fabio

think many peolpe will find this of great help, think you could send us some more detials on the kind of excercises. So your advice will be to leave the adductors alone in terms of stretching and strenght?

and how about the massage? how often have you been doing it? you been wokring on the pubic symphasis itself, do you go hard with the pressure? sorry lots of question but I am impressed with your results.

so abs are totally out of questions I guess.

cheers vitt

Peggy

24-08-2006, 08:15 PM

Thanks Fabio,

You've offered me the best advice I've heard after seeing way too many quacks! The way you've explained it makes total sense. I'm with Vitt, if you can offer any specific exercises that you found helpful, or any further advice, it would be greatly appreciated.

Peggy

Liz

24-08-2006, 08:47 PM

Hi THere!
Oh My Gosh! I just read through all the entries since I last wrote and Boy am I ever confused. I was under the impression that O P was an inflammation in the symphysis pubis and that the way to get rid of the pain was to get rid of the inflammation. The only way to get rid of the inflammation ( if anti-inflammatories don't work ) is to keep from moving the joint to allow it to rest and heal. If that can't be done by the person themselves, then it has to be done medically, whether by joint fusion or grafting. The exercise thing is blowing my mind here. I feel for every one of you that are still in pain. People just don't seem to understand how absolutely hellish it is. Not just the pain but the way it totally affects your life and everyone around you. Mentally, it is a real struggle to keep going. I wish everyone of you could have the sucess that I have experienced. I REALLY and TRULY do. I danced all night at my niece's wedding this weekend and I have to say, it was pretty emotional for me to do that. The only thing sore the next day was my knees! GO figure. The surgery works and it really isn't that big a deal. I am praying for you all!
Liz

Mayamki

24-08-2006, 10:48 PM

hello

Thanks to everyone for your support, I am adding you all in my daily prayers, I feel so reliefed when I check on this forum a recent msg cause there is always someone giving a good advise. Kepp up the good work wish all the hel;p in this world we have to be patience.

Health peace love to all. from Malta

Cannavaro

25-08-2006, 12:44 AM

Hi all,

I am glad some of you have shown interest in my advice.

This is what I am i'm sure most of you have been through....

You hurt your groin, it doesnt matter how you did it however you have been diagnosed with osteitis pubis. You went to a doctor where the main advice you received is total rest for a period of a few months. After this time you then try and resume what you were doing (running, sports) to find that the pain is still there. Here is why...for Osteitis Pubis to occur there has to be a problem somewhere in the body structure, for me the problem was weak Glutes, so my Pubis absorbed all the pressue while running, hence leading to OP. Resting doesnt help as it makes muscles weaker, tight and not fully supportive. So when you try and return to your activity the pain returns twice as much because of your weakened support structure.

After my period of rest I began stretching and strengthening, not the groin area, however my glutes, lower back, quads, everything. The most important however are the lower abs. Strong lower abs along with strong and flexible Glutes will make you see a huge difference in pubis pain. Too many people focus on the area of injury and dont look at why the injury happened in the first place.

In regards with massaging, its very light, and I focus alot on the adductor, the adductor origin and even press into the pubis a little. I do this every night before sleep and even at my desk at work. A couple of minutes a day is all you need.

I'm no pro however I think people are looking for the quick fix instead of the right fix.

Feel free to email me at ffusari@eftel.com.au for more info.

Fabio.

Peggy

28-08-2006, 08:02 AM

Vitt,

I have tried sending you a personal message, but your mailbox is too full. Once you've cleared some msg's let me know whether it came through.

Peggy -xxx-

vitt

28-08-2006, 06:29 PM

hey peggy

have cleared it out...but no new messages came throu. sorry, maybe you could sent it again pls?

cheers vitt

Helen

31-08-2006, 05:32 AM

Luz i'm sorry to here your news. I agree, why didn't they book your MRI straight away when the results were available. its very frustrating. If he suggests surgery is he saying the same as what I had done, or something different? Let me know. If it is the same, the surgery is ok. i'm not going to lie, it is painful, but i found the first two days was the worst (morphine works) and the pain you are probally already in, makes the rest of the recovery feel great. Good Luck, where here to support what ever the decision.

I've hopefully, only got two more weeks on crutches. had twelve in all. its been frustrating especially when my sons want to go somewhere and i carn't take them, but hopefully it will be all worth it when off the crutches.

Take Care all
Helen

Ireland

01-09-2006, 04:13 PM

:confused: Hi

Thanks a million Helen, Peggy, Vitt and anyone else who left me messages. It's so good to be able to share this dreadful experience with people who have some idea what you're going through... I find that a lot of my friends and family just can't bear to know much about it - they feel so helpless!

I don't know for definite yet that there is an infection - just that the Bone Scan Report queried if there was any "suspicion of underlying infection" due to the bone scan being "quite hot" - there is "increased activity in the early vascular and delayed bony images". So when I go back up on September 11th I have the MRI in the morning and see the consultant in the afternoon - if the MRI does not confirm infection the Ortho will inject the symphysis pubis and aspirate to see if they can get a culture...! But my understanding, from his secretary, is that he can't/won't do that on the same day and that I may have to wait and come up again for the injection and then wait for the results. I really don't much like all this waiting and wondering if I've an infection eating away at the bone!?!

Helen, re surgery - I was in such a state of shock that pertinent question just evaded me! All he said was that if there was an infection that he'd have to cut it out - "surgical debridement"...!?! I have read some articles written on acute osteomyelitis/septic arthritis that suggest long term treatment with intravenous antibiotics - but he never mentioned that as an option. I'm not sure if it's that whatever it is I have is chronic and therefore the same treatment isn't suitable...

The thought of any surgery terrifies me - but the thought of having surgery and still not
having my pelvis stabilised at the end of it is just too much for me altogether! I suspect that if I do need surgery to remove infection that he wouldn't perform the same surgery as Helen had at the same time... I'd probably have to wait for the infection to clear first. He certainly didn't mention doing the two at once. But to be honest I DON'T KNOW... which is another part of the problem!

Anyway keep researching everyone, keep trying and keep posting on the forum! We'll try to help keep one another sane. Luz

Peggy

02-09-2006, 07:40 AM

Onya Luz,

you certainly sound better in this last post......you sound as though you've dealt with the initial shock of that bone scan. Whilst you're waiting for everything to happen, it's best to get well researched, so you know all the options available to you. A surgeon will tell you what he thinks is the best course of action, not necesarily all the options available. Gone are the days when you put all your trust into their hands.............huh???

I soooooo know what you're taking about when you mentioned discussing this codition with family & friends. They ask how you're doing & little did they realize the "can of worms they opened!!!" Then when you actually say what you're feeling they show disinterest. Is it because it's so horrible that they think we're exaggerating, or they just don't want to know? I agree, it's easier to share the discussion with others in the know!!!!

Sorry to cut this short, but whilst typing, my 2yo son decided to grab a black texta & draw on the beige carpet, you will soon be able to hear the echo of my SCREAM down your way!

Peggyxx

jellybean

05-09-2006, 12:05 PM

Hi all,

Dealing with long term injury, pain or just a plain crappy (bad) situation can challenge even the best sense of humour.

It’s amazing how a good laugh helps keep things in perspective and lets you forget about things for a while.

I guess everyone’s sense of humour is different, but the attached clip ("Having a bad day") makes me laugh out loud every time I watch it (make sure you watch it right through)!

'Hope you enjoy it too!

[In the absence of a “general” or “when you need a laugh” section on the site I decided to post this in the Hip/groin injury - OP sub-forum - it seems to be the place on this site where most people are dealing with long term injury and pain].

Cheers,

JB

P.S. Special thanks to Production Assistant Dan Redrup!

skol

06-09-2006, 09:45 AM

Hello All,

I think I'm going mad! I'm in to my fifth month of being laid up with OP. I had to double my pain relief today - now on 25mg per hour of fetanyl patches I stick on to get 24hour supply).

I don't think I'm ever going to get better, and i feel as though life is passing me by.

With two other serious medical conditions,I just don't know what to do.

I also don't know how to start/post a new message. Will someone tell me, please!!!

Sarah

jennypenny

06-09-2006, 10:04 AM

Hi everyone...

I've only just stumbled across you guys by accident and boy am I glad I did... I'd never heard of OP before and I'm now trying to research it as much as I can.... thanks sooooo much! It's amazing to read posts from people who suffering in the same way when those around you just don't seem to get it!

I'm 34, in Scotland (UK) and I've two young children, one aged 6 and the other about to turn 4 in November. I had been diagnosed with Diastasis Symphysis Pubis (by MRI) The actual separation took place 8 weeks into the pregnancy. I've had all sorts of medications (including Fentanyl patches which I came off of because they had me like a junkie and I was totally spaced out all of the time) and I even tried the plating op back in 2003. The plating has helped get me out of the wheelchair but I still can't walk unaided (on crutches 24/7) and I'm constantly in a tremendous amount of pain... I'm now at the point where my GP's etc just don't know what to do except prescribe more pills: painkillers, anti-depressants etc etc.

I was actually researching Prolotherapy when I stumbled accross this site so you're views on it are very much welcome...

AND THANKS FOR BEING HERE!!!!!!!!!!

Jen

Peggy

06-09-2006, 08:36 PM

Hi everyone,

I have just had my 3rd visit with Pat Allen and hopefully the last. I'll see how I go! Having had OP for so long may warrant a further visit later down the track.

But guess what???

I feel great. I really do! Pat did say it will take a few months to feel the full effects of what he's done. I can do so much more, doing housework, power-walking, I kicked a soccerball with the kids....I haven't done these things in a very long time!

I'm sure you're reading this in disbelief! When Steely first mentioned him I too had my doubts. It sounded too good to be true! We were concerned that what he does may aggravate my condition....but the complete opposite has happened! I'm a new person, happier, in control & ready to resume my life! FINALLY!@!@!@!

I hope that come the next few months I can say "I'M CURED"!!! Given the way I'm feeling, I'm confident that I will be saying those exact words! I even did a light jog, but then my ankles and knees ached because I have been taking it easy for so long.....I'm in the process of looking into some strengthening programs. Taking it easy for so long hasn't done me many favours.

I can't explain why what he does works, but it just does. I have never come across anyone who treats the way he does, but hey these medics need to get off their backsides & look into it! Cause this should be available to everyone! 3 seessions of half an hour treatment was all I had, and I feel fabulous.

Take care everyone,

Peggy xxx

Flash

08-09-2006, 11:04 PM

Hi all I am currently a new member to this forum and have regested for a reason as i also now have cronic grion problems. I havent yet gone to see a Physo about my condition but do believe i have the disease of Osteitis Pubis as after 13 weeks of cronic grion pain.

I am a Young Australian Rules Footballer at the age of 17 who plays League footy for my local club. I had a very strong pre season this year as i was continuly running and pushing the limits to earn my spot in the squad. It all occured in the first half of the season where I felt a sharp pain in my left pubic bone while Running with high intensity at training, but continued to train as it was just a sudden pain sharp pain which went away afterwards. But two weeks after the sharp pain the injury became more cronic but continued to train as i believed it was just a cramp. anther 2 weeks on i couldnt train and i ended up missing 10 games (rest of the season) due to the injury.

I have pain all over my pelvic Gurtil ranging from my left pubic bone, right pubic bone, left adductor, right adductor, the bottocks, gluts ect. every day i wake up wondering where will the pain be next!!!

The injury has recovered a little bit which is a positive, meaning i can walk around at normal pace with no pain. But any running, jumping twisting, sitting in an unconfortble spot will agravate my injury.

I just want to know is how long do you thing I will obtain this injury and is there any sort of Anti inflammitries that will help mt condition?

How long should i rest i for before i start rehabilitation activities

Is there any sort of advice you can give me as i believe to have a bright future in football at a young age. Any sort of advice would be much appreciated

Thank You for your time. :)

Thihan

09-09-2006, 11:19 AM

Peggy,

That's great news that you're feeling better. I have heard about Pat Allen from a number of different sources. I was wondering exactly what it is he does. Is it massage? Joint manipulation? or something else entirely? I know it can be hard to describe what some one else is doing when it is you getting the treatment. But for us skeptics out here could you fill us in on any details ;) ? I would appreciate any info which could help in improving the outcomes for my clients.

Thanks
Thihan

addit: also to Flash - don't wait to try and sort this problem out yourself, get down to a good sports physio in your area especially an AFL one who will have lots of experience in treating chronic groin conditions. Self -diagnosis and treatment, even with help from old heads on the internet, is fraught with problems without accurate assessment. That's why we have experts. Try asking around to people you know or go to the physio website where you can "find a physio" - www.physiotherapy.asn.au

Stacy

10-09-2006, 04:13 AM

Hi Peggy and fellow forum friends,

Wow! I am so excited for you. What an amazing journey. I would love to know what he does! For some of the newer members, go back and read many of the posts. There is a lot of good information there. But in summary, you will find that traditional therapies do not work. And by that I mean rest, anti-inflammatories, little activity. It just prolongs your suffering. Many here can attest to that. From what I can see physical therapy, massage/manipulation Pat Allen style and prolotherapy are better options.

Jen, you asked about prolotherapy. I started the treatment when I learned for sure what my condition was and after 4 sessions I am about 80% better. No kidding. It's a bit uncomfortable since you will receive injections to certain areas (including pubic bone and groin) but the discomfort is worth the gradual elimination of day to day pain. I've been dealing with this for almost 2 years after seeing countless doctors. I found my prolo guy and also do rolfing and went from not being able to walk to walking, housework, etc. but I'm still not back to running yet (although I do have hopes). Check out www.prolotherapy.org for more info. It's an option but if you can get to a Pat Allen kind of person or miritsmassage.org, I would recommend that first. I live in US but if I were closer, I'd be at those doors first.

Hope this helps a bit. Best to everyone.

Stacy

Peggy

10-09-2006, 06:50 PM

Hi all,

hope you're fighting fit, cause that's what it takes to cope with OP!!!

Thihan you asked what it is that Pat does? He is a manipulator, to me it felt like he was shifting the tight tendons to release all the tension. They were so tight and tense that it causes pressure on the nervous system which induces the pain and inflammation. I could actually hear him shifting the tendons, they clicked just like when you have a clicky joint. I wont kid you it was painful at times, but he knew it and he gave me moments to recoup. But the chronic pain of OP is much worse, so I could cope with it.

Flash my advice to you is to see someone like Pat. He treats many AFL stars, he was at the Lexus centre just last week. Better to deal with it early, so you may only need 1 or 2 sessions, and you may avoid getting to the state that many of us did. Because I've had OP so long, going untreated (as recommended by the doctors) my pubic bone is arthritic....it'll probably cause me grief in the future, but I'm gonna try to make the most of what I have now, cause who knows what's around the corner!!!

Otherwise, all is well. I'm feeling fine, just a bit apprehensive in that I feel I should build up to physical activity gradually. I'm still working on core strength. If anyone has any further advice on how to get back into it all.....it would be appreciated!

Peggy

bustersmum

11-09-2006, 07:52 AM

I'm new to this guess i shoud say hi 2 all,i'm sat with my jaw on my knee and tears trickling i've been in massive pain from the same diagnosos been going on nearlly 2 years my little man is 17 months old now and still breast feeding which does restrict some pain relief i'm still wheelchaired good days which we all know are few and far between i use sticks i'm close to being offered a plate through surgery and the realisation of what you said just floored me,but what i would like to say is ditch the anti depressants if possible i tried that but i decided i wanted to be in control of something i didn't want my pelvis beting me and the best therapy you could get is chatting on here i'm sure it would help more than the AD'S take care and keep fighting
bye Karla

Ireland

12-09-2006, 07:29 PM

:confused: Hi to all..
I was due to have my MRI yesterday to see if there's an infection in the bone... but the Orthopaedic Surgeon's incompetant secretary accidentally cancelled my appointment and was unable to un-cancel it!?! So now I've to wait 2 more weeks and go up on 25th September! It just gets more trying all the time!

bustermum/Karla,
I'm still[U] breastfeeding my 'little' man and I've had great relief from acupuncture... it works on the pain, your overall wellbeing, your immune system as well as your mood... so it's worth a try!

I went to a women's health physio up to three times a week from last November to February... I made good progress at first (I also did 8 SCENAR sessions in December and felt that they helped somewhat too!)... but then the physio felt that my progress had plateaued and referred me to the pain clinic where I saw an anaesthesit!?! He wanted to prescribe low dose tri-cyclic anti-depressants for pain relief and suggested that the dose could be increased later if necessary... instead I started acupuncture!

Then in April I went to see the pain clinic's liaison psychiatrist who suggested anti-depressants again - but having attended for acupuncture for a couple of months already I felt that I was improving so declined... well I went to see him again at the end of August and he wasn't talking about anti-depressants anymore!

I'm still attending weekly acupuncture sessions - now with a woman locally who's also a qualified physio and I find her excellent - although I put out my sacro-iliac joint recently and boy do I know all about the pain again... but it did remind me that I used to be that bad all the time and now it's not [U]as bad!

Keep trying and keep posting!
Luz

Peggy

13-09-2006, 07:55 PM

Hi to everyone,

WELCOME to the website bustersmum! It's terrible to hear that you suffer OP, but nice to have you aboard. It's true that it does help to have others to discuss the issues and treatments available, great to share them with others in the know. I totally agree with Luz that there are really TOUGH times when we think it can't get any worse.....but it does get better! Be positive and stay in control, cause it makes a difference. If you succomb to the pain, it'll be 10 times worse....been there!!! BE STRONG! Just remember that when it all gets too much, there is the surgery to fall back on, but personally that would be a last resort. Not sure of your whereabouts, but there is the surgery in Finland also, less invasive and quicker recovery. Vitt has been looking into it in great detail, maybe worth sending her a msg if interested.

Take care everyone,

Peggy

vitt

13-09-2006, 10:01 PM

hi to everyone, see that we have some new poeple here, that's great...yeah keep strong and positive, and keep searching cos there are things out there that can help us. I think that we are lucky to have this forum and have the internet.

I have lots of info on a surgeon in finland that does a surgery for OP that's mini invasive and has given great results, so if anyone is interested I'll be happy to pass on some notes.

hope you are all getting better, take care vitt

bustersmum

14-09-2006, 10:31 AM

Hiya,
thankyou all for your kind messages its now just gone 2am and i'm sat up cos i can't sleep yet again ,i'm living in uk and i see you guys are all over the place but the support thats on offer is closer.I see my consultant again tuesday but so far have found him quite arrogant not supportive at all and can never understand why this complaint causes me so much pain so to find you guys has made me feel loads better .While i was pregnant i had accupuncture and physio they did help a little but as soon as i'd had my little man the accupuncture was withdrawn and the physio only lasted a further few weeks and i'm told i can maybe have them back after MRI results so we'll have to see after tuesday.Vitt i would love further info on the surgery i have a sister who's a theatre nurse and shes warned me how invasive the plated surgery is so other options would be great :take care all and keep smiling bustersmum

bustersmum

14-09-2006, 12:33 PM

Hi Liz ,
I know this post was made last year and not sure if you still post (new to this site)but have you read "bobs journal"? the links on this site somewhere? i was wondering is the surgery the same or not? would be very grateful for reply
bustersmum(karla)

vitt

14-09-2006, 04:31 PM

hey karla

welcome again. Liz hasnt been posting for a while, maybe it is a good sign that she's all good he he....

yeah she did have the same surgery has bob did...but she seemed to recovery a lot easier., and it basically did work for her. have a read of all the posting from that start, we went thru that well and she gave heaps of info...

but yeah the finland one is heaps esie, if you want some info can you pls send me your email address and will send you some of the papers that the surgeon sent to me, cannot post it here, ok?

cheers vitt

Helen

15-09-2006, 04:31 AM

Welcome to bustersmum. I live in wales and had the surgery 12 weeks ago.(bone graft and plaiting of pubis) i've just seen my consultant today and he is pleased with the progress, after looking at x-rays. My bone is fusing well and can now give up the crutches, after being on them for 12 weeks. very strainage walking without them though and getting in the driving seat again, but lovly to have the freedom again. I have to see him again in 3 months. so will keep you all posted.

take care all
helen

bustersmum

15-09-2006, 05:03 AM

Hi Vitt and Helen,
thanks vitt for info i'll sort out for emails would help loads ,also Helen thats great news keep your chin up and keep us posted to how your doing my head feels like a goldfish bowl at the moment and i'm still puzzled as to why i left research so long(must have a too trusting nature).Also i'm trying to track down a male nurse who works at my local hospital i spoke with him accidentally by phone a few months ago.He was great with info on this complaint said he'd done 2 years study on this complaint and he's the 1st ever to understand what i'm going through could do with him on side with my consultant but because of data protection laws etc i'm not sure where to start? all help would be more than gratefully received.
take care all chat soon Karla :D

vitt

15-09-2006, 04:30 PM

hey karla

have a read of the paper i sent you. the doc is really good and helpul, read it first and let me know. I have been emailing him lots about my condition and decided to go there in 2 weeks hey!!!!!!!!!! cannot wait, he seems really prepared and managed to get more info from him that never visited me that from ppl over here. I did sent all my scans over to him too.

let me know what your feelings are, it maight be worth emailing him. ciao vitt

vitt

15-09-2006, 10:32 PM

hey helen

hey thisis great, you are free to walk around hey. so how you feeling now. think that the surgery has worked? do you feel better than before?

how far can you walk now? well it is amazing how 12 weeks have gone past, remember you talking about it, and it's done...let us know how you feel pain and movement wise and all that

ciao vitt

bustersmum

16-09-2006, 12:35 AM

Hi to all,
Thanks for email Vitt reads very interesting i'm curious to what my consultant will say.Helen wow what an inspiration you are.Keep up the good work after i read bobs diary i felt at one of my lowest ebbs but with your posts there is hope if thats where i end up.
Also from reading back through the pages i was joyed to see others having problems around menstruation my consultant used to shake his head and wonder what my thoughts were on why i had such a rough time .I should add i have uncontrolled epilepsy which don't help my pelvis and i'd been using muscle relaxants for this but i'm now thinking is this why i'm having it so rough so i've stopped taking them and i'm just gonna try and manage on my other pain killers,anti infamms etc.
I'll let you now how it goes all take care and try a smile a day it works for me chat soon Karla

Nicholas

18-09-2006, 07:29 PM

If any of you are looking for websites with information on Osteitis Pubis then here are some: http://en.wikipedia.org/wiki/Osteitis_pubis
http://www.emedicine.com/pmr/topic92.htm
http://www.mayoclinic.com/health/osteitis-pubis/AN01256
http://www.injuryupdate.com.au/injur...itis_pubis.php
http://afl.com.au/default.asp?pg=inj...ticleid=120262
http://au.health.yahoo.com/041101/25...ml?r=967673105
http://www.abc.net.au/tv/secondopinion/txt/s1514729.htm

vitt

21-09-2006, 06:25 PM

hi to just everyone

no doubts that I wish that your health is improving...

i came up with an idea. I want to build a web site on OP, this is what I normally do for a living BTW....

anyway, something between a journal,a nd place where people can find all the info we have discussed, therapies we tried, name of doctor, massage etc....obviously not giving out medical advise but pure experience

so I am starting with collecting info, and i wonder whether any of you wants to help. basically you email me what you think it should go on the site, like names of therapies you tried, name of doctor in your country, even simple tips, like how to sleep better etc...herbal remedies
EVERYTHING we have learned about OP and help ppl out there to cure and do better....sound?

if you interesting and wants to send me info to work on, pls do so at vmomento@hotmail.com

interested to see if you think it's a good idea

ciao vitt

bustersmum

22-09-2006, 06:39 AM

Hi to all,
sounds like great idea Vitt it will also give you something positive to with your time while your finding a cure.
I had my MRI results Tuesday i'm told i have just under 5mm vertical seperation and my consultant who's only do the surgery twice(just plate not fusion as well) has agreed to pass me over to MKr williams in wales who Helen used fingers crossed i have the same success as youHelen .
Helen if you have any tips for me even down to what clothing you found comfy while recovering that would be great.
My MRI also discovered a prolapsed disc that requires further surgery but that can wait my pelvis is far more debilitating .
Hope every one is finding a little relief in something keep smiling take care
Karla

Nicholas

22-09-2006, 11:26 PM

Great idea Vitt.

When will you open it? I vote that it should have a forum there where Osteitis Pubis sufferers could discuss it.

What does everyone else think about that?

I also think it should have a list of specialists

Stacy

23-09-2006, 07:27 AM

Hi Vitt and all,

I think a web site is a wonderful idea. I spent countless hours searching key words for my symptoms. I think this is a very important point...to cover KEY WORDS that describe our pain. Everything from lower abdomen, groin, hip, buttocks, lower back, popping sounds in pubic bone!! They all need to be included so that when people do a search, they are more likely to find the information. Perhaps we can set it up so we can have a section "What Didn't Work for Me" and a section "What DID Work for Me" so people can have a basis for comparison. I would love to provide a synopsis of my experience (and ongoing challenges) from therapies and treatment to those including simple things like "to wear or to not wear underwear today because the elastic is too painful!!

Let me know how I can contribute.

Best to all,
Stacy

vitt

23-09-2006, 03:37 PM

hey stacy

you have been great....yeah I think a list of key words is what we need, I am going to add the ones you meantioned.....

I know exactly what you mean about underwear, thought I was the only to have this problem....

as far as what worked and what didnt is what we had in mind, but i have to be careful not to put off ppl from treatment that could work for them even if it didnt work for me.....i going to make it clear that whatever advise we give needs to be checked with their doct, physio etc....

and of course the level of pain and OP they have, some are worst than other etc....

yeah maybe you could put all this down, your story too, keeping it brief and send it to me, the important thing for me would be to be able to meantion the names of doctor that helped you, so if someone from your area/country needs help we can tell them where to go.....wouldnt it have been so easier for you if you knew where to go?

so we can start a directory or something? ha?

cool, whe you have time, maybe you cna send this to me pls

cheers hey vitt

vitt

23-09-2006, 03:39 PM

hey nicholas

as far the forum, I am going to think about it, as I really like this forum.....so I might just redirect ppl to here, and ther eare heaps of good info from ppl here already, so I might have just a guestbook or soemthing...bye

Ireland

24-09-2006, 12:43 AM

Hi to Vitt and everyone...

It sounds like a great idea to have a website dedicated to OP - I think this problem is probably far more wide-spread than any of us imagines! The idea of having a directory of international professionals who have experience succesfully treating this condition is great! It would give people the chance to shop around... have options and empower them to challenge their local 'specialists' a bit too!

When I went to the first couple of orthopaedic surgeons I felt they were very intolerent of me/my husband asking them 'too many' questions - and I felt that if I pissed them off (to be blunt about it) that I'd have nowhere else to go and would be back to feeling alone and isolated with this rotten DISabling condition! However, my instincts told me that they were wrong & I'm so glad that I kept searching - if I do have an infection in the bone (I find out on next Monday after the MRI) the worst thing for me to do would've been to have the steroid injection that 3 consultants had wanted me to have...!?!

Once I'd come across some other specialists in the UK I didn't feel half so concerned about upsetting my consultant and have had a much better time since. I stated that I didn't think that enough was known yet about my condition to know how best to treat it - and the consultant agreed and sent me for the Bone Scan and CT... and the results of those have let me to now have the MRI...

We need to become a force to be reckoned with... a lobbying group even! However, re the forum idea - I think we've a great forum going here and it would be a pity to have a competing one in tandem... Just a few of my ideas... best of luck Vitt. And on a slightly personal/humourous note... I too have the issue with knicker-elastic, especially around my periods! Yet again... good to know that it's not just me!!!

Keep well everyone & keep posting!
Regards, Luz

Francine

26-09-2006, 03:24 PM

Hi there everyone,

This forum is amazing! I have recently had roughly 3-6 months of "what the hell is wrong with my groin!" and finally a bone scan revealed non-acute OP. My pain levels are constantly around a 5/10, so although painful during excercise, it has never been through the roof. All of my pain is pin-pointed in the inner groin.
The original findings on MRI was a stress reaction (low grade stress fracture) of the femur neck. I am a triathlete, so it was not overly surprising to have an overuse injury such as that. However, now that I have been diagnosed with OP, it is highly likely that it was my problem all along, and the stress reaction was then caused by me being silly enough to keep running (and hence, altered biomechanics caused the femur neck to be over-stressed).
My pain first started in the middle of a cross country race, and my initial feeling was that I had strained my groin. So for me, the OP was more of an acute onset, rather than gradual over time.

Anyway... over the last 3 months, I was on cruches for 6-weeks, but the pain persisted. I have been swimming and just recently been back on the exercise bike, but the pain just constantly stays the same.. No better, no worse. It's getting to a point where I feel that i'm just going to have to live with it forever, and quit sport for good!
I really got a lot out of reading your messages on this site. I was wondering if there are any Melbourne-dwellers out there who can point me in the right direction of a physio? I saw the website posted by Paulie (www.miritismassage.com), but it's a little far away (i'm north eastern suburbs).
Like many people, i have suffered mental up's and down's due to the fact it is such an ongoing thing..... I'm 23 y.o and want to have a much longer career as a triathlete.
It's just so annoying that even things like water-running, a purely rehabiliative exercise hurts! There's hardly anything you can do other than sit around, waiting to get horribly unfit!
I would love to get some feedback on rehab/where to go. I have recently read that anti-inflamatorries and icing is a good strategy?

Take it easy,

Francine

Hipster

26-09-2006, 09:37 PM

Sounds like you're in a bit of trouble at the moment Francine. It also sounds like you need some specific, experienced and evidence based advice. Your best port of call, especially with your athletic background is an APA (australian physiotherapy association) titled sports physiotherapist. There are some great practitioners who specialise in overuse injuries in runners and cyclists.

Check out find-a physio on the APA website (www.physiotherapy.asn.au). Some recommendations in the northern suburbs are Alphington Sports Medicine Centre, Millpark Physiotherapy, Reservoir Sports Medicine Centre (Details in yellowpages).

You may also need the services of a good sports physician especially as you have had symptoms for a while and may need more medical intervention (including anti-inflammatories). The best ones are at Olympic Park Sports Medicine, Alphington SPOrts Medicine and Latrobe Medical Centre.

Good Luck.:)

Francine

27-09-2006, 10:20 AM

Thanks Hipster,
I have had the 'run around' to quite a number of practitioners, physios, osteo's etc... for awhile now. I guess because OP (especially lower grades) doesn't always show up perfectly on any type of scan...
MRI didn't reveal anything, and bone scan showed "non-specific" findings of OP... I also showed up some bruising of the accetabulum... which was a bit strange..
It's just the most annoying condition.... one day it feels ok, then the next it's sore to do anything. The thing that gets to me the most is you cant even walk more than 5min without it flaring up! For a runner, that is mere torture to not even be able to walk! Coz you know that running is a looooong way off :(

Ciao,

Francine

Ireland

27-09-2006, 05:03 PM

Hi everyone! Just a brief update...

Good...ish news - having had the MRI on Monday I'm told that there's "no evidence" of infection in the bone - but there is very active inflammation! The orthopaedic surgeon wants me to go into hospital in Dublin on 6th October to have him aspirate under general anaesthetic and if the sample/biopsy taken is definitely clear of infection he wants to inject steroid to reduce the inflammation. He says that I'll be quite sore for a time afterwards... but this procedure has a diagnostic purpose as well - if the steroid injection helps to alleviate the pain then it's a sign that surgery might also help...

But, he also mentioned Reflex Sympathetic Dystrophy again affecting my genital femoral nerve and suggested that because of the damage done to the soft tissue and nerves (sympathetic nervous system) in that area that even surgery might not (ever) resolve the pain... just the instability!

Any ideas anyone... has anyone else had or heard of this procedure? Is there anywhere else on the injuryupdate.com website or elsewhere that you've come across that details this procedure or a forum discussing it - the pros and cons... Or does anyone have any other suggestions as to how to 'switch off' the inflammation? Not to be too pessimistic, but... I also find myself wondering how do any of you know that you don't have the same type of OP as me? I understand that as long as the inflammation is active, it continues to do damage!?!

Take care and keep posting! Luz

Helen

27-09-2006, 09:59 PM

Hi hope you are all keeping spirits up. I feel great I have to say, i am having physio three times a week(hopefully help me to lose weight as well) and feel good. I still get pain from my groin and bone graft site but this is nothing to what it was like prior to surgery. I dont take any painkillers because i don't want to mask the pain, and my body tell me when to stop. If i didn't do this i think i would personnally do too much.

Vitt-- I think the web site is a great idea, if i can help with my experience don't hesitate to contact me. helenejohns@msn.com

Bustersmum-- Just to let you know my surgeon was Mr Ian Pallister not Mr Williams at Morriston. I know Mr williams does the surgery but i dont' know what he is like. I know Mr Pallister was willing to look into seeing patients from different areas so maybe contacting him may help. As to what to take etc i was in for a week so plenty of nighties and pyjamas one a day. nighties at the beginning, easy to get on and with catheter easier. then pyjamas for when on crutches(dignity). Plenty of nice snacks, got to say food is not tasty, lost half a stone. But most of all go in with an open mind, i am not going to lie it does hurt but not for long, and the pain that you are probally in at the moment surgery is nothing to that long term pain. I feel so good at the moment, that i want to do so much with my life. I feel that i have been in a painful rut and now i can get out of it. Take care keep me posted as to when you are going in, maybe able to vist you.

Luz--- I dont want to put a downer on you, but just to say I had a steriod injection in my symphysis pubis but it didnt work at all, so i dont want you to feel, that if it doesnt work that is it. I had lots of inflamation and bone errossion on my pubis bone. I hope though that this has not put you off. Its worth a try, it could work for you.

Take Care all, keep posted try to keep spirits high.
Helen

mel81

28-09-2006, 08:50 AM

I was wondering if there are any Melbourne-dwellers out there who can point me in the right direction of a physio? I saw the website posted by Paulie (www.miritismassage.com), but it's a little far away (i'm north eastern suburbs).

Francine,

I drive 7 hrs each way to see Gary for my OP, and you're telling me living in the northern suburbs of melbourne is too far!!! My God I cant believe I read that!

I belive that Gary will get your OP to be improved greatly, reducing pain, tightness ect then its then up to you to strengthen it by exercise.

Doing stuff like a core work, pilates reformer, swminning, running program under a physio's guidance. Alphington's the best Physio I have found in melbourne, Karen Natoli was good value. But Garys massage is the best thing I have come across in the two + years I have had OP, i just wish I was closer and had found him in the early stages of the injury not 1 2/4 yaer in after an operation!

I highly advise tyou to at least see Gary once and see how you feel after it.

Good Luck