My pelvic pain syndrome started with interstitial cystitis, a disorder diagnosed by distending the bladder while looking up there with a camera, if it is IC the bladder will hemorrhage when distended. That is a frequency / urgency / pain type bladder condition. I had that for a good 20 years before the PNE, but after the 1st 3 years or so it was under very good control from self care and not causing a major impact on my life. I started getting various neuropathies (1st the toes, feet, then pudendal) about 5 or 6 years ago, and finally the symptoms peaked in 2009 with severe neurogenic bladder - that is, I had bladder spasms so bad i could not function. Every time I stood up, it felt like I was 9 months pregnant and a baby was falling on my bladder. I could not walk or drive for any reasonable period due to severe urge to urinate - pretty much I guess I was at the point where most people would just consider themselves incontinent and put on an adult diaper, but I could not do that because the contact of a diaper with my pelvic area would have made the PN unbearable. So I was just in a constant struggle to "hold it in".
All this stuff: The IC, PNE, neurogenic bladder - are all interrelated and part of the same pelvic pain syndrome.
I don't know if this is true for everyone, but my bladder problem was much easier to fix than the associated neuropathies. I have very few bladder problems now, just some painless excess residual. In other words my bladder feels 100% but I am very prone to bladder infections because when I urinate even though like it feels like my bladder is all the way empty, it in fact still retains some urine which makes a nice environment for bacterial growth. Physical Therapy resolved almost all the bladder stuff, and in fact my bladder began to improve very rapidly within the 1st week or 2 of PT even when the neuropathies remained intractable.
I would recommend trying PT for the bladder, but do be firm about not doing anything that exacerbates your neuropathy. I was fortunate in that my neuropathy was not exacerbated by PT, but that has not been the case for many people who have posted on this board. If it is going to work, it will start to work quick and not "get worse before it gets better". A lot of patients have been given that line by PT's, it is a fallacy. I kept going back because my bladder could feel the difference each time I walked out of there.
pelvic pain started 1985 age 14 interstitial cystitis. Refused medical care from age 17, did GREAT with self care for years.
2004 PN started gradually, disabled by 2009. Underlying cause SIJD & Tarlov cysts
improved with PT & meds: neurontin, valium, nortriptyline, propanolol. (off nortriptyline & propanolol now, yay!)
Tarlov cyst surgery with Dr. Frank Feigenbaum March 20, 2012.
Results have been excellent so far; but I won't know my final functional level for a couple of years.