Health Organization for Pudendal Education

Hi all, I am posting on behalf of a friend, hope you won't mind sharing your wisdom with me and I will relay to her. So, she is trying to determine once and for all which nerve is the culprit. History is no trauma, just lots of running, hills, 6 mi. A day. Sitting during 2 hr a day commute. Vestibule pain, potter MRI showed scarring around the perineal branch near the vestibule. She has bladder pain when pressed, and pain when the urine hits the skin. Lots of pain with sitting, burning on outer buttock cheek, lower part. Sometimes gets rectal pain, and what she calls, " the torch" which is burning inside the vagina. A very well known pt told her it was her pfcn, and that it could be worked out in pt. however, several other well known docs, have said it is IC, and PN. She's looking for way to get a definitive diagnosis about this pfcn especially, because if she can find for sure yes or no, that will determine her course of treatment. She was even told she needed a vestibulectomy by one, and then another said No, you just have IC. Anyone know of a doc who has testing to determine the difference between the pfcn an pn? And she had a guided nerve block to the pfcn, which took away her pain in the vestibule. To confuse matters, she on another trip had an unguided pudendal block which also took away the pain. She's lost so much money and really just has a bunch of conflicting diagnosis'. Any ideas???

Thanks,
Kara

Not sure how to tell the difference -- maybe she has more than one thing going on. Or it may have started as one thing but if pelvic muscles went into spasm it may have turned into more. It's typically considered safer to try conservative therapies before surgery so if she is able to try PT 1st maybe that is the route to try first. Do a forum search on pfcn and you will come up with a bunch of posts made by other patients on the topic.

Violet

Thank you, Violet. You are very nice for responding, and I will forward her your advice. It is all just so confusing, the diagnostics. Seems each doctor has their own way, so when seeing many doctors its just overwhelming considering all of the differing opinions. This has just got to improve, but until they can put their egos aside and collaborate, I'm afraid not much progress will be made.

Also, by the way, a friend of mine, Dahri McFaline started a nonprofit association, called PNA, pudendal neuralgia association. Among others, Dr. Richard Marvel is on her board of directors. She was just able to get legal help, and I believe the association is now officially registered. I don't know if you can look it up and maybe put the info somewhere on this site?? That would be awesome if so.

Thanks again,
Kara