Originally Posted by Susanne C.

It is really hard to describe, honestly when I try my doctor just cuts me off and writes the Valium prescription. He is at least as embarrassed as I am and that is saying a lot. We leave it at "muscle spasms" which it is. The worst pain is episodic, the burning waxes and wanes through the day but is a daily issue.
There is an Internet forum for pudendal neuralgia which offers better descriptions, yes the pain is horrible, impossible to sit still, just pacing. I have tried hot baths as well as ice, but the Valium helps most, sometimes it takes two of the 5 mg. but it works pretty quickly.
Sitting on hard chairs for too long and too much time in the bathroom seems to trigger the sharp shooting pain.
i think it is a poorly understood condition but it makes sense that as the neuropathy moves up into hips and waist area that it would affect EVERYTHING. My skin biopsy six years ago showed the nerve fibers gone at knee level and breaking down at hip level. I have burning around my waist and ribs now too.
I completely understand how awful this is.