Health Organization for Pudendal Education

ezer wrote:I disagree. I had more than 100 sessions of PT

Can't say I've had more than 100 sessions of PT - but not too far behind it. It really does matter what your personal medical issues are and the skill level of the PT.
I don't believe PT is for everyone, regardless if it's PF/PT, Ortho PT, Soft tissue PT, ect .... My experience has been that you can't effectively PT neuropathies.

ezer wrote:

Bobby wrote:If its the proper kind of physical therapy, and if you stick to it and don't expect to be instantly cured than yes, it will likely work...

I disagree. I had more than 100 sessions of PT including many sessions with Tim Sawyer, the Stanford Protocol PT. It never cured me. Yes, I was better for a few hours afterward but that's it. I am not an exception and many forum members here have reported the same.
Refer to David Wise's latest study and you will see that the results are not very conclusive (especially if you take in consideration the fact that close to half the people in the study were rejected for unknown reasons).

Ezer, I agree. There have been a lot of people that had physical therapy and it did not help, and then there are a few that it did help. Each case is different I guess. I thought about going to David Wise's clinic, but when I read all the negative comments on this forum and another forum, I did not go.There is a Physical Therapist in my area that specializes in treating pelvic floor problem. I may give it another try and see if seeing a specialist makes a difference.If this doesn't help, I will give pain management a try.

Joddy and Karyn,
Don't get me wrong, PT has helped me. It has helped me getting out of a bad flare-up at times or recovering from surgery. That is very valuable. It is just not a cure.

ezer wrote:Joddy and Karyn,
Don't get me wrong, PT has helped me. It has helped me getting out of a bad flare-up at times or recovering from surgery. That is very valuable. It is just not a cure.

I apologize if it sounded as if I were minimizing the effects of PT. That wasn't my intention. I do recognize that PT is helpful for some but the point I was trying to get across is that it's not helpful for everyone.

Bobby wrote: Everyone seems to think surgery is the only way but the odds of a successful surgery are staggeringly low. The cause of most of our conditions is an unconscious habit of tensing our pelvic floor.

I can't remember ever reading someone say on this forum that surgery is the only way. I frequently read people recommending that you try conservative things like PT before trying invasive things like PN blocks and surgery. The problem is that PT doesn't work for everyone. For someone in their 40's who has had no problems with pelvic pain before (no habit of unconsciously tensing their pelvic floor) who suddenly develops neuropathic pain after some sort of trauma to the pelvic area it doesn't seem likely that their condition is psychosomatic.

Violet

Sorry to butt in here but am in a sad and confused place at the moment dealing with so much pain and trying to make the right choice. Been diagnosed with PN on both sides, can't sit at all and pretty well housebound with perineum hypersensitivity off the scale. Had MRI confirmed nerve entrapment both sides, two blocks and first didn't work and second only gave 4 hours relief on one side. Also had PT without change. Just saw PN specialist who suggested pain pump as well as bilateral PN release (not sure if I'm wording this correctly) and am gutted because I always thought I'd get better even if it meant rest for two years!! The thing is, I'd be prepared to do just that before considering surgery. Can anyone tell me if they have an opinion on what they'd do in my position? I just need a sounding board so wouldn't judge anyone, I'm just so confused and having an emotional meltdown!
Judy

Judy, I read back through your posts and didn't see any mention of how this started for you. I don't know if a wait and see approach would work or not. It may depend on whether the cause of your pain was due to some sort of trauma or lifestyle of exercise and possibly through lifestyle changes you will heal over time. I don't know -- it's hard to predict. There are people who have perservered with physical therapy and gotten better. It's such a personal decision. I couldn't tolerate the horrible flare-up from internal PT and I wasn't getting any better after 8 months in bed so I opted for surgery. It turned out to be the right decision in my case but not everyone is that lucky. I'm sorry you are on this horrible journey and I wish you the best whatever decision you make.

Violet

Thanks Violet I'm in need of a bit of advice or personal experiences which might help me make my decision. In hindsight my PN started after my first bladder prolapse surgery about 10 years ago. It wasn't until the onset of my current flare since March this year that linked all my previous episodes. The mini-flares occurred after prolonged sitting and were easily managed. The onset of my current flare was from prolonged sitting and ignoring the signals coupled with a urinary tract infection. I keep thinking that if I rest completely, than after time this too will settle. Is that unlikely do you think? The extent of the pain is 1,000% more than I've previously experienced and probably naive of me to think that way, I've had no improvement from PT and blocks and the specialist didn't even propose Botox or acupuncture, services which he also provides to patients. He obviously has his reasons probably because of my lack of response. I note that you had bed rest for many months prior to your surgery without improvement, my mind just can't register that nerves won't recover with rest. I'm obviously in denial stage, I just am having difficulty with the idea that I'm going to have an implant for the rest of my life.

Dizzyblonde wrote: I note that you had bed rest for many months prior to your surgery without improvement, my mind just can't register that nerves won't recover with rest. I'm obviously in denial stage, I just am having difficulty with the idea that I'm going to have an implant for the rest of my life.

You mentioned an implant. Are they talking about a neurostimulator? I don't have an implant -- I had pudendal nerve decompression surgery to release a nerve entrapment.

Surgery is not always the answer because it can cause more scar tissue to form but in certain cases where the nerve is entrapped between ligaments then surgery may be the only way to relase the entrapment. I think it's important for you to do some more research about what your options are and exactly what the procedure is before agreeing to anything.

Your nerves might recover with rest but if there is some sort of nerve entrapment, possibly related to your previous prolapse surgery there may be a continual irritation that won't go away with rest because the nerve continues to be compressed or impinged on.

Keep reading and asking questions before making a decision. Hopefully some of our other members will have some additional input and insights.

Violet

My specialist recommended an implant together with bilateral release of nerves too. Bit of a double whammy so will do more research as you suggested particularly within this forum. When you had bed rest Violet, what was the extent of your improvement if any? If I lay constantly with light housework and slow walking, the pain subsides but I simply can't sit or wear tight fitting clothes or any pressure on the perineal area. I'm not even sure medication works (lyrica 300mg twice daily and endep 5mg once daily)..