Health Organization for Pudendal Education

Hi, my name is Terry and currently being diagnosed for PNE. I've done 3 months of pelvic physical therapy that has gone no where. I've done myo fascial release, dry needling.
My urologist, Dr. Hakky wants me to do a MRI of the pelvis (soft tissue) with and without contrast. My guess is that my pudendal nerve and artery on the right side are some how being compressed by the alcocks canal.

would this MRI show something?
If something shows up would i see a surgeon?
who are some good surgeons in america?
which surgeons are cover by insurance or ambetter?
are most surgeons out of pocket?
how much did you pay for your surgery with insurance?

HI Terry, I am new here myself so really dont know as much as many of the long term posters. My understanding you need a special kind of MRI called a Potter MRI to be able to see the nerves. Is you doctor recommending that. If not the MRI may not show any nerves.

There are not many surgeons for men in the USA. The women can go to Dr Hibner in Arizona who I understand takes insurance. Then there is Dr Dellon in Baltimore, Dr Conway in NH, Dr Tollestrop in Nevada, Dr William who shares an office with Dr Dellon in Towson Maryland. There may be more. Dr Dellon does not take insurance but the others may. Some travel to France for surgery as they are more surgeons there.

I have read a huge amount about this PN and also PFCN and just about everyone recommends you try conservative treatment at first and only do surgery as a last resort. Many people on this forum have had surgery and gotten worse so dont jump into it. Have you tried a Pelvic PT or just regular PT....big difference. Lot of patients more knowledgable than me than can maybe chime in and respond.

Terry....I saw you were in the Atlanta area. One doctor you may want to contact is Dr David Prologo who does some treatments on the PN. I thing he is with Emory and a worth a call.

frigator wrote:Terry....I saw you were in the Atlanta area. One doctor you may want to contact is Dr David Prologo who does some treatments on the PN. I thing he is with Emory and a worth a call.

Yeah I heard he freezes the nerve to stop the pain. I want to just move the pudendal nerve and artery from any compression.

frigator wrote:HI Terry, I am new here myself so really dont know as much as many of the long term posters. My understanding you need a special kind of MRI called a Potter MRI to be able to see the nerves. Is you doctor recommending that. If not the MRI may not show any nerves.

There are not many surgeons for men in the USA. The women can go to Dr Hibner in Arizona who I understand takes insurance. Then there is Dr Dellon in Baltimore, Dr Conway in NH, Dr Tollestrop in Nevada, Dr William who shares an office with Dr Dellon in Towson Maryland. There may be more. Dr Dellon does not take insurance but the others may. Some travel to France for surgery as they are more surgeons there.

I have read a huge amount about this PN and also PFCN and just about everyone recommends you try conservative treatment at first and only do surgery as a last resort. Many people on this forum have had surgery and gotten worse so dont jump into it. Have you tried a Pelvic PT or just regular PT....big difference. Lot of patients more knowledgable than me than can maybe chime in and respond.

I've done pelvic pt it dosent really help. Pain always comes back. Ive done dry needling and myofascial release. For some reason my pain always gets worse with stretching.

I'm pretty sure I have some kind of entrapment going on. Theres always a burning in near the alcocks canal area and I can barely use my legs in the morning which I suspect is because some kind of other compression of nerve going down the leg. My penis is extremely numb and I have erectile dysfunction now.

Pleasehelpme, I saw that the Potter protocol was mentioned in this thread. I did get a 3T MRI following that protocol, and the radiologist found edema between the SS and ST ligaments on the left side only that she said was highly suggestive of pudendal nerve compression. My symptoms and the reduction in pain with a nerve block were more important for the diagnosis, but the MRI result fit with the larger picture and did help me move forward with surgery. So, if you are going to get an MRI anyway, you could ask the MRI place to follow Dr. Potter's protocol. You can email her office and ask for it. I also have a copy, so if you want to pm me your email address, I can send it to you.

You asked about insurance and fees for surgery. My insurance covered it and I had maxed out on insurance, so it didn't cost me anything. So, I don't know the cost, but uninsured patients usually pay more than insurance companies, so I'm sure it would be expensive. Surgery is usually considered a last resort after conservative treatments don't work. I had mine four years after my pain started, and in those four year, I tried several other treatments.

April

Hello, try this diaphragmic breathing. Go to a physiotherapist and learn how to calm your nervous system down. Your breathing will calm the muscles down around the nerves. This will take time. Dry needling and it may take months because you are keyed up and frantic. Learn how to breathe when using the bathroom so you don’t push or pull the nerves. Then talk to the physiotherapist about nerve gliding exercises use lidocaine on the nerves. I took gabapentin and baclofen to calm down my nervous system and then titrated down while dry needling. I went to Oceanside in Stratham Nh(Christian Zhames) to understand my nerves needed desensitizing. I also had internal trigger point injections by my urogynecologist(Dr Sastry in Portsmouth NH). Now, I am combining Reformer Pilates with prolotherapy( Dr. Borg-Stein Newton Ma)to stabilize my core because some muscles were weak and some overcompensating. When you are injured your brain hangs on to the memory of pain. Read about the Australian Mosley and the snake bite.