Confused, need help

[Charles555nc]

I suspect I have Pudendal Nerve Entrapment (PNE), and yet I have had surgery already for that.

I saw Dr Aaron Filler (not a great guy) and had surgery for piriformis syndrome. No help

Had a diagnosis of PNE, had a surgery with Dr FIller that re-sectioned my sacro spinus and sacro tuberous ligaments. No help.

Had surgery for Al Cock's Canal pudendal entrapment. No help.

I dont know if Dr Filler is unskilled or he just missed a point of entrapment of the nerve...his office could care less.

Symptoms:
Sexual dysfunction so bad I cant have an orgasm unless I open my hips (like sitting indian style while lying on your back) and arching my back. If my left side of my pelvis is an inch and a half higher, which it usually is, my pain is LESS. If after physical therapy both sides of my pelvis are level, my pain is at its WORST, and I get electrical shocks into the pelvic floor, severe impotence.

Pain seems to match slightly above the line of the sacrotuberous ligament and then down to the bottom inside of the butt/pelvic floor. Just burns like crazy. Of course I have some pain in the front of the pelvis as well, and some burning in my testicle/penis.

Who should I see, what should I do, this is really pissing me off.

I have read that the falciform process of the sacro-tuberal ligament can also pinch the pudendal nerve, but that is around the Al Cock's Canal, I think.

[Charles555nc]

Is there a different section I should post in? Where should I post to get an informed response?

[stephanies]

Maybe Dr. Filler's surgeries did not address your area of entrapment or maybe your pain is not from an entrapment of the nerve. Dr. Filler diagnoses primarily on the results of the MRN. Many doctors believe there are limitations to what imaging can communicate about the state of a small nerve such as this one. Have you been able to get any additional information from PT? You can learn a lot by reading this forum including the homepage and member posts. The threads here on treatment options are quite comprehensive. I understand your frustration and your desire to resolve your problem. Not much is clear cut with chronic pudendal pain and, in my opinion, the "informed response" you are looking for comes from you evaluating the options available for treatment since there is no magic bullet or step by step plan to treat this condition for most of us.

[Ray P.]

Charles
I have had 2 surgeries for PNE. The first one made things worse. The second one did not do anything.
I would give anything to be in the shape I was in before I started any treatment for this.
Don't feel like your the only one out there.

Ray

[Violet M]

Charles, you could read Ezer's most recent posts. He had unsuccessful surgery from Dr. Filler too but is doing well now. Maybe something in his posts would help you.

Violet