Health Organization for Pudendal Education

Hello everyone. And thank you to the moderators for this site.
I have been suffering for 4 years with what I am pretty certain is pudendal neuralgia. I have seen several urologists, I had physical therapy and tried several muscle relaxers and antidepressants. The diagnosis so far has been levator ani syndrome. I have rectal and penile pain. The last urologist I saw said that my pudendal nerve could be the cause. He mentioned that the specialists are in France. I'm starting to think that I really need to see a specialist, someone who knows about this disorder. I have suspected this myself for a while too, as the symptoms match and the pain is a constant burning.

Any advice and suggestions will be appreciated. Thanks in advance.

Welcome,
In 2007-08 I had Levitor Ani Syndrome pelvic muscles spasms (per colon-rectal dr) and he treated it by Electro Galvanic Stimulation (EGS). those were two separate incidents then in 2010 I sat in a hard chair and didn't get up though in pain and then I was entrapped with PNE then decompression surgery and now just PN. But it was cleared up the first two times by the EGS. So you may want to try some things (they tried botox for me in 2010 when the EGS wouldn't work but I think because I was entrapped it didn't help), before you go off to surgery. See the FAQs for things to rule out and the various treatments on the forum including Mindbody, restorative exercise, and have you seen a PN aware PT who may be able to clear up if you only have muscle spasms (list of PTs off he homepage).
Janet

Thank you janetm2 for your thoughtful reply. I had pelvic floor physical therapy. It seemed to help at first but it was subsequently diminishing return. It eventually completely failed to help.

I had rolfing which again initially helped (is that like restorative exercise?).

I am slowly discovering the publications and resources on this very informative site.

Not sure if rolfing is connected to restorative exercise but maybe you will find the answer somewhere on the site. Best of luck to you. Sorry the initial treatments were not more helpful.
Janet

Rolfing and restorative exercise are not exactly the same.

http://www.rolf.org/about

http://www.restorativeexercise.com/about/

I was advised on a FB forum to consult with Dr. Jerome Weiss in San Francisco. I had a paid phone consultation with him. I specifically asked Dr. Weiss about PNE and surgery. Dr. Weiss surprised me by stating that he does not believe in pudendal entrapment anymore and advises strongly against surgery.

To say that I am confused is an understatement. Is the PNE diagnostic really open to such controversy?

bled wrote: To say that I am confused is an understatement. Is the PNE diagnostic really open to such controversy?

It depends on who you talk to. For someone like me who experienced PNE and has their life back after PNE decompression surgery I don't find it very controversial but for people who tried PNE surgery and didn't have good results I can see how they would be skeptical. I would be interested to know more about how Dr. Weiss came to his conclusions. There are people who have reported on the forum that they received numerous injections from Dr. Weiss and did not get better (some got worse) so while it may be easy for him to say he doesn't believe in PNE surgery, does he have anything better to offer people who have run out of options?

Violet

Violet, thank you for your response. Your endorsement of surgery is very persuasive. Would you say that pudendal nerve decompression surgery is in general as successful as carpal tunnel surgery?

Well, saying that surgery made me better is not an endorsement of PNE surgery for everyone -- just that it worked for me.

I haven't compared the success rates of carpal tunnel and PNE surgery so I don't know how the success rates compare.

Violet

Still, a patient and especially a moderator like yourself that reports complete success with surgery has some clout. Food for thoughts. Carpal tunnel syndrome surgery has a 70% to 90% success.