Health Organization for Pudendal Education

ezer wrote: To me It almost seems that when a patient does not return, it is assumed that he or she is cured.

So true

Griff522 wrote:The therapist spent a lot of time telling me how weak my pelvic floor was using bio feedback. Well I'm thinking "lady, your pelvic floor would be weak too if you had been in pain for 6 months!". She did mostly MR along the nerve and the pain really never changed. I stopped going after two months.

Just recently, I went to be evaluated by a PT for SIJD. I don't think she found much SIJD but she did find other problems with my pelvis which HerMajesty is trying to help me understand. But I have felt a difference in the pain since this PT has adjusted my llium and worked on my tailbone issue.

Griff, These PT's who tell you that you have "weak pelvic muscles" are a little confused regarding the chicken and the egg...If you have pelvic joint dysfunction and neuropathy this will impact mechanoreceptors which will MAKE your muscles weak...It's not a concept I understand too well, but I do definitely understand that muscles can be turned on and off reflexively, and that our condition tends to turn certain muscles "off"...something you cannot exercise your way out of!
Jerry Hesch did a video about my feet and posted it on youtube, more just playing around than anything I think, with a weird concept (it works on fingers too)...I had a hypermobile LEFT ankle and he stabilized it by working on the (normal) RIGHT ankle only - this reflexively "turned on" the stablizing muscles on the left. I kind of thought it was a silly video to make especially since long term, the muscles shut off again and he had to work the left ankle directly to permanently stabilize it (still, it was manual manipulation, I never had to do a bit of excercise to stabilize the ankle)...but I guess it does make a point: muscle strength and stability is subject to many external factors. PT's focused on soft tissue only, very much oversimplify the role of muscle as a primary cause and primary focus of treatment.

Below is a case study presented at the International Urogynacological Association in Toronto last year. It describes a 52 year old woman who went to see a physical therapist in Chicago who advises against PNE surgery. The patient must have eventually given up on physical therapy and went on to have TG surgery with Dr Antolak. The surgery was a success. The presentation states

Decompression of the nerve relieved her pain over 3 months, reduced voiding symptoms,, permitted 'fantastic orgasms', and after 10 months defacation returned to normal

http://webcasts.prous.com/webcast_viewe ... Y9vwvzAas=

Thanks for posting that Charlie. I couldn't listen to the whole 36 mins (can't sit that long) but what I heard was quite interesting.

In your signature, you say that your muscles are fine now. What kind of pain are you having then? Burning when you sit?

I just survived a two week flare of burning/raw pain and today the symptoms are finally starting to subside a bit. But I still have the muscle spasm issue. I'll take a muscle spasm any day over the burning!!!!!

Griff522 wrote:Thanks for posting that Charlie. I couldn't listen to the whole 36 mins (can't sit that long) but what I heard was quite interesting.

In your signature, you say that your muscles are fine now. What kind of pain are you having then? Burning when you sit?

Yes it is a long presentation to listen to. As regards my own problem I have no muscular issues. I used to have some trigger points or connective tissue issues but these have all resolved after physical therapy. Unfortunately my pain is the exact same. I think for some patients trigger points are just a symptom not the cause of pain. I have been examined by top pelvic floor PT's and PNE Drs now and have been told my pelvic floor feels completely normal. I can also drop my pelvic floor normally.

My pain does n't feel as though my pelvis is tight though. It feels the opposite. It feels as if my pelvis is being ripped apart. The main pain I feel is exactly where my ligaments are located and ischial tuberosities are located. The Drs I have seen agree it is a more than likely a ligament entrapment. So I am planning surgery for this.

Charlie, I have what I would consider to be ligament pain sometimes too so I think I know what you are talking about.

Good luck as you pursue the surgery option -- we will be cheering you on.

Violet M wrote:Charlie, I have what I would consider to be ligament pain sometimes too so I think I know what you are talking about.

Good luck as you pursue the surgery option -- we will be cheering you on.

Thanks Violet. Interesting that you sometimes get a similar type of pain.

Charlie wrote:My pain does n't feel as though my pelvis is tight though. It feels the opposite. It feels as if my pelvis is being ripped apart. The main pain I feel is exactly where my ligaments are located. It feels as if the ligaments are getting stretched apart constantly. It cannot be muscles as on exam there is absolutely nothing wrong with my pelvic floor muscles or any other muscles for that matter. The places where my ligaments are though feel like rods of steel under constant tension, almost as if they are ropes which are too short for my pelvis. I also get lots of intense burning pain at this location. The Drs I have seen agree it is a more than likely a ligament entrapment. So I am planning surgery for this.

Charlie, is the sensation you describe unilateral or bilateral?

HerMajesty wrote:
Charlie, is the sensation you describe unilateral or bilateral?

Bilateral.

HerMajesty wrote

Griff, These PT's who tell you that you have "weak pelvic muscles" are a little confused regarding the chicken and the egg...If you have pelvic joint dysfunction and neuropathy this will impact mechanoreceptors which will MAKE your muscles weak...It's not a concept I understand too well, but I do definitely understand that muscles can be turned on and off reflexively, and that our condition tends to turn certain muscles "off"...something you cannot exercise your way out of!

Because I have sciatic entrapment too I can see the wasted muscle on the inside of my calf so it stands to reason that other muscles may be involved with PN. I would also agree that muscles are probably NOT the primary problem, unless they are torn, ruptured or have some haematoma which can then go on to form scar tissue around nerves.
Unfortunately my sciatic nerve runs through my piriformis muscle and I did have an egg shaped lump just to the side of my sacroiliac joint (at the sciatic joint end of my P muscle) which may have been a haematoma although 1 Dr said it could be a ruptured sacroiliac joint ? ? Can that happen ? I may have misunderstood him and he meant a ruptured piriformis muscle ~shrugs~ It's all so complicated !
I know the SI joint always hurts, to the touch and aches, the rest of my pain does seem to radiate from there and my sit bones (again always sore to touch/pressure)

Charlie wrote:

Griff522 wrote:

My pain does n't feel as though my pelvis is tight though. It feels the opposite. It feels as if my pelvis is being ripped apart. The main pain I feel is exactly where my ligaments are located. It feels as if the ligaments are getting stretched apart constantly. It cannot be muscles as on exam there is absolutely nothing wrong with my pelvic floor muscles or any other muscles for that matter. The places where my ligaments are though feel like rods of steel under constant tension, almost as if they are ropes which are too short for my pelvis. I also get lots of intense burning pain at this location. The Drs I have seen agree it is a more than likely a ligament entrapment. So I am planning surgery for this.

Charlie, I'm sure you have tried a sacroiliac belt, but if not give it a go. Not that I agree with using this all of the time as the muscles need to be strong enough to act as a 'girdle' for the pelvis but it may help identify a pelvic/muscle weekness and offer a degree of comfort too.
I was told that all I needed to do was go to pilates and strengthen these muscles (I always was fairly fit so didn't think there could be much wrong with them) I have since done many strengthening exercises however and have been able to identify (ish) and work my 'pelvic girdle' muscles (as oppossed to pelvic floor muscles) Those muscles are still working I guess because working them just increases the sacroiliac pain. Doing it now ! OW!
Take care all,
Helen