Health Organization for Pudendal Education

Hi,

I had an injury last year and have been dealing with neuralgia ever since. I was originally diagnosed with postherpetic neuralgia, but the pain has developed in to pudendal neuralgia. Does anyone know of any neurologists, urologists, or pain management centers in the Raleigh Durham area that can help. Please private message me for more details if needed

Did you get a response? I am also in NC (Wrightsville Beach) and would like advice. I did a difficult hot yoga hip workout which hurt my groin then I developed a ranging case of shingles on the right side of my lady parts and up my backside. Still experiencing nerve pain since April. Have had success with pain injections but my nerve pain resumes whenever I start to feel better and start up with light exercise which makes me think there is some sort of entrapment. I'm 49 and outdoor/adventure enthusiast who used to love running, yoga and hiking and it is very humbling to be reduced to light stretching and short walks.

Do I need to go to a special doc to read an MRI to determine muscle or ligament entrapment? Any recommendations? Thank you!!

I don't know of any physicians in NC but there are some PT's listed on our website at the following link: http://www.pudendalhope.info/node/63#NC. Sometimes they can point you in the right direction in your state.

Ideally you would want a specialist to read your MRI but reality is that MRI's aren't entirely accurate at determining an entrapment. Part of the purpose of an MRI is to make sure there isn't something obvious causing the problem -- like a tumor, etc.

Violet

Dr. Andrew Goldstein is a gyn in Washington, DC and Dr. Rachel Rubin is a urologist in DC and both understand pelvic pain and pudendal neuralgia well. Would it be possible to travel to one of them for an opinion. I suspect it’s probably a 6 hour or so from Wrightsville Beach, but might help you get somewhere. I also think if there is something, like yoga, that brings on the pain, it’s best not to continue to do it and find another way to exercise. You definitely don’t want to flare up issues that won’t calm back down.

Stephanies

Dr. Dimon at the Duke Pain Medicine Clinic in Durham treats pudendal neuralgia. I've had a successful nerve block from him, and now I'm scheduled for another one before trying a pulsed RF ablation. He's the first doctor I've seen who seems to know a lot about this condition.

Dr. Jason Attaman in Washington State does virtual consults, but you'd obviously have to fly to get treatment. He may have other recommendations for providers in your area.

I had his "triple" procedure on my right side pudendal nerve in Feb 2022; which consists of neuromodulation, platelet hydrodissection of the Alcock's canal, and botox injections to the tissues surrounding the nerve. Results so far have been promising.

https://jasonattaman.com/pudendal-neuralgia-treatment/

How are you doing now?

This past February, I flew to see Hollis Potter in NYC to conduct and read an MRN and then had a pudendal nerve block in the afternoon and now I'm fully recovered. It was hands down worth the quick trip to NYC for this care. My insurance covered it and I'm now pain free. The nerve block kicked in within a few hours and I was able to start slowly walking and work up to running again. Potter found that there was no entrapment so it was post herpetic neurolgia from shingles in that area. It was a relieve to know there was no entrapment so when exercising I knew that I wasn't increasing any damage. The nerve block was exact as it was done with MRI imaging.

That's great news, Sutherll7! It sounds like the steroid reduced inflammation, and then you gradually recovered from the post herpetic neuralgia. Wonderful news!

April

I have been using Dr. Erin Cary at UNC Hospital Chapel Hill/Hillsborough, NC. I had already been diagnosed with PN when I started seeing her and she has followed the same treatment plan as my previous doctor using botox and medication. She also has also done two surgeries (2013 and 2018) for SCS which offers some pain relief. She used nerve blocks early on but does not now since the relief is temporary. In my case she has recommended I not have any surgeries in the pelvis. She has recommended that I try photobiomoeulation next. I'm sure every case is different, but she may be of help to you. She is a kind and caring doctor.