Health Organization for Pudendal Education

Hi everyone,

I was diagnosed with pne many years ago. For daily chronic pain I ingest amitriptyline and mobicox.

My biggest problem is nerve attacks. Sharp stabbing, knife like pain in coccyx region and tingling numbness in genital region. If I try to sit or stand more than 20-30 minutes, the nerve attack comes on in a matter of minutes and lasts for aapprox 30 minutes. The only way to stop/decrease these attacks is to not sit/stand or long . This is no way to live. I can not work, drive, movies, theaters, restaurants etc ... I am miserable and confined to my home 95% of the time . To go to doctor appts I have to lay in the back seat of the car.

Does anyone have any suggestions.

Gail

Gail, have you tried any of the anti-seizure or neuropathic drugs such as neurontin, lyrica, topamax, clonazepam, etc.?

One of our former members used to get these horrible attacks but since her PNE surgery they've pretty much gone away.

Hi violet,

I tried Lyrica but had to many side effects so had to stop. I did notice my pain was less so I stood for an hour. About 3 hours later I had the worst nerve attack ever.

Gail

Violet,

Do you know where this former member had her surgery? These attacks are my biggest hurdles and pain medication seem to only mask the pain for a few hours than attacks are worse.

Gail

Gail, she had her surgery from Dr. Hibner. Do you have a current plan or appointments you are waiting for right now or are you just kind of in limbo?

Hi Violet,

I am presently doing a lot of research on both T3-MRI and MRN, as well the surgeons success rates.

There is a lot of opinions out there.

Since I had my coccyx removed and became sustantially worse, I am very hesitant about future surgeries. I may just get a scan done to get a second opinion re:pne diagnosis. My pne diagnosis was made via pudendal nerve block (fluoroscope), which appears to be an inferior test next to tme MRN or T3-MRI.

Gail

polarbear wrote:Hi Violet,

I am presently doing a lot of research on both T3-MRI and MRN, as well the surgeons success rates.

There is a lot of opinions out there.

Since I had my coccyx removed and became sustantially worse, I am very hesitant about future surgeries. I may just get a scan done to get a second opinion re:pne diagnosis. My pne diagnosis was made via pudendal nerve block (fluoroscope), which appears to be an inferior test next to tme MRN or T3-MRI.

Gail

Gail, while the 3T MRI/MRN may seem superior to the nerve blocks they are not yet considered diagnostic for PNE. I do not blame you for wanting to avoid surgery at all costs though. Have you had physical therapy or tried Botox injections? I know lyrics didn't work for you but maybe neurontin would. You could start very small at 100mg daily and very slowly work your way up. I did a very slow increase over several months and worked up to 2400mg with very little side effects. This condition is really hard. You are not alone.

Hi Faith,

I thought the T3-MRI or MRN were diagnostic tools, thanks for the clarification. With regard to Botox, my doctor said not a good idea because it may cause bladder/bowel incontinence. As for Neuronton, I had an allergic reaction (hives).

Thanks for understanding my fear of another surgery. It helps to know I am not alone.

Gail

Gail,

I am still working my way through this gauntlet of tests, drugs, and procedures. I didn't know Botox had the risk of incontinence. I was thinking that might be my next step.

We have to know we are all in this together.

cari

polarbear wrote: My pne diagnosis was made via pudendal nerve block (fluoroscope), which appears to be an inferior test next to tme MRN or T3-MRI.

My understanding is that the advantage of the MRN or 3T MRI for diagnosis is that they are not invasive and therefore carry less risk but I don't think we have enough evidence yet to say they are more accurate for a diagnosis. There are probably differences of opinion, probably even among the docs, as to which is more valuable for a diagnosis and until more research is done we probably won't know for sure.