Pudendal Neuralgia or PNE?


I'm looking for anyone with experience of having pudendal neuralgia after RC with neobladder?  My father had his RC with Neo in 2006 and about 6 months after that surgery began to have severe burning issues in the urethra (not when urinating).  This triggered the uro to run test to determine possible cause.  In some instances he did have infection but everything else was fine (emptying completely, no leaking, etc).  He was advised to irrigate….but no change.  Many tests later, various prescriptions, etc……still severe burning, more frequently and also including the rectum/anus area as well.  To make the long story short (since I had already blogged about the burning issues before)……we are now over 2 years with this problem which has affected his mental state very badly, caused severe depression, loss of appetite, etc…..and no answers from any doctors.  He has been to many uro's, gastro's, neurologist, etc…..and to hospitals over 15 times in the last year….5 times in just this year….and no diagnosis.

 This past weekend during one flare-up episode….a family member anesthesiologist did an examination to my father while this was happening to try and pin-point the location.   From this analysis he was able to determine that my father was suffering from a pudendal nerve neuralgia and this would explain the same burning fire-like feeling from the anus going into the urethra that no doctor was explain to correlate.  I immediately did the research on this nerve and in fact found many of my father's symptoms matching.  It would explain why his test results are always negative (cysto, culture, CTs, MRIs, Sonogram, etc).  WHY WOULD THESE DOCTORS NOT KNOW THIS?? WHY WOULD THERE BE NO ASSOCIATION WITH THIS NERVE?

 I have found a handful of doctors that specialize in this and use various treatment methods to help or cure the person (in some cases…90% success rate).  My father is now 78 and I really need to get this right the first time because he cannot take much more pain or issues.  These past 3 years have been very hard on him…getting very little sleep, not eating well, just losing his enjoyment of life and the will to live.  My mother is his caretaker at home and has been severely affected as well.

 Can anyone shine a light on this matter if you know something that could help us out? I would really appreciate hearing from you. 🙂

Thank you,



Jackie Author