Health Organization for Pudendal Education

Choohooo, unfortunately I have found no relief for this issue. My life has completely changed, and I am very frustrated. I have sharp pain in the incision area (base of penis), burning pain along the pudendal canal & extreme pain at the tailbone/coccyx area. My theory is that there are others like us who have this experience, but don't come close to arriving at an accurate diagnosis. In my case, scar tissue had developed over the femoral (if I recall correctly) branch of the pudendal nerve, trapping it in place.

I have emailed Dr Aszmann in Austria in hopes that he might have a solution. As of right now, there are no doctors willing to touch the femoral branch of the pudendal nerve at the base of the penis.

As for me, I try to do as little sitting as possible. I can't stand much either because of chronic plantar fasciitis & osteoarthritis in both feet. I now have a recliner that can put me close to a horizontal position, which is where I spend most of my time. I'm on a host of medications, including 1800mg of Gabapentin. About every 2-3 weeks, I'll stop taking all other meds for a couple of days, to try to prevent building up a tolerance and avoid addiction. These days also allow me to assess where my pain is without those meds, and I'll just tell you it's not good. I still have to take Ambien to sleep through the pain.

I try to do things with the family every now and then, but there is such a price to pay. For example, last weekend I went to a corn maze with the wife & kids. This consisted of a 2 mile drive from the house and about an hour and a half of light walking. That little trip took me 4 days to recover from, staying horizontal in bed, using ice packs on my penis and all that fun stuff. Definitely a life changer. I hope that you find some relief, or at least get an accurate diagnosis and get yourself on the right path.

Have you thought about working with a PT or massage therapist to see if they can break up the scar tissue a little and give the nerve some space? I don't know the success rates of this, but I have read about it and maybe it is something to try for a few sessions before you consider surgery. Good luck.

Sincerely,
Stephanies

As of right now, a surgical solution does not exist. As I said, no doctor is going to touch an entrapped nerve in that location. As for trying to work it out by hand, yes, I have tried it. Understand, though, that this is EXTREMELY painful and just a few seconds of hard pinching, rubbing, or "massaging" results in days of extreme pain. Obviously, I've had no success with it in 2 years, and I don't foresee going through that torture again.

Holliday,

This all sounds very difficult. But, I think the idea of trying to find a physical therapist is a good one. The trick is to find one with experience with pn. My first pt did just what you described, and, of course, it only made my problem worse. But my second pt (who has more experience with pn) has never directly touched my nerve. So, if you could find a local pt with experience, it might be helpful. If nothing else, it could be helpful to have regular contact with another person who understands the problem.

April

Man. My heart truly goes out to you. I know for a fact that there are plenty of people that struggle after vasectomy. I've had a lot of back, neck, hip, head and abdominal pain. I still have plenty of appointments to go to but so far they believe it's type 2 CRPS with dysautonomia from damage to the illioinguinal and genitofemoral nerves during vasectomy. I get the occasional anal pain but mostly it's in my core. Which, makes sense if you look at how those nerves work. Have you looked into seeing Dr Jerome Weiss? He's in SF I believe. He seems to be the national expert on pudenal neuralgia. Dr Dellon in Vegas and dr Maloney in Tucson are two neurosurgeons with similar experience to your Austrian guy. I would also consider Dr Parekattil in Florida. He's a post vas pain expert. Apparently there have been people with PN who find relief from different cord surgeries. Have you ever had your hormones checked? There's plenty of research showing benefit of testosterone replacement for chronic pain patients. It's done wonders for my depression/anxiety. I don't have all the answers but I do spend plenty of time researching this garbage.