Anyone out there diagnosed with Pudendal Neuralgia?

I was diagnosed at the University of Washington in 2004, but had symptoms since 1978. It is excruciating now, but appointments now take up to a year or more to get.

I rode bicycles for thousands of miles in the last century. Since 2000, it is agonizing to sit upright on a hard chair. It also makes my legs go dead.

I did have cauda equina syndrome in 2021 (after osteomyelitis in my spine after the Pfizer). Doctors do not think this pain and numbness is cauda equina because my EMG and MRIs are normal.

I found the nerve blocks to be helpful, and while walking, sitting pain mostly goes away (I have developed what I call a pain echo where the imprint of pain from a chair continues after I stand).

This is dreadful. I sat on a donut for 14-1/2 years until finally.......I took an anti-seizure medicine for an unrelated matter and within 2 weeks it was gone. My pelvic therapist had mentioned to me that she heard of this. Ask your doctor. It was Topamax.

I am interested in how you were diagnosed with equina syndrome. I have read extensively and have watched all the Utube videos. I possibly have pudendal neuralgia also. My past has involved some spine surgery, most lately a process performed by a neurologist in Little Rock, Ark. known as a Vari Lift Procedure. About that time I began to be diagnosed as OAB as I was peeing in my pants. I am a 84 year old male and all of my vitals are within norms. My first encounter with a problem related to the fact that sitting down was painful on my right side. I had a lot of procedures to try to correct that. I just deal with it and know how to avoid pain. I am very interested to know how cauda aquina was diagnosed and how it has affected your life. There are some very scary reports out there about this condition. Thanks in advance, Jerry.

I was fortunate to find a neurosurgeon at the University of Washington who knows how to read MRIs very well. All other doctors had missed it. Previously, I had been treated by many doctors who did not recognize the symptoms. I did not know when I had to use the bathroom and over a summer became incontinent. I started using a walker because I was having great difficulty lifting my legs when walking. When I saw an orthopedist who specializes in spines, I could not rise from a chair or balance on two feet. He referred me to the UW, which took several months. During the interim, I had a month and a half of no symptoms at all. Then I suddenly got so bad I needed a wheelchair (one leg would not propel ahead of the other leg) and was wearing diapers full time. I could only pee standing up (I am a female). When I saw the neurosurgeon, he scheduled me that week for a 14 hour surgery. I walked normally the night after surgery. I just saw the neurosurgeon in December with this difficulty rising from a chair and buttocks going numb but painful, but he did not suspect cauda equina because I am still continent. That seems to be the most important criteria. I walk one or two hours a day so I have the necessary muscles.

I am now working with doctors to see if CES is the cause of my incontinence. I do have the sitting down pain problem which goes away when I stand, walk or lye down on my stomach.

I’ve had great luck with Radio frequency ablation to the pudendal nerve, typically relief last about a year and a half for complete relief, and even after that the mild burning is nothing compared to before treatment

There is a pudendal support group on the Internet. I learned there there is a very simple way to tell whether or not it’s pudendal pain or not. Basically, if you sit down on a toilet seat and your pain goes away, you have pudendal nerve symptoms. It’s so simple. It seems stupid but it basically is a litmus test.

Having been there, I would for sure. Try Radio frequency ablation before surgery. It solved my problem. I finally went to Mayo Clinic to find out what I could do about my pudendal nerve pain. It is worth going to Mayo

my Cauda Equina problem was NOT diagnosed by the neurosurgeon and other doctors who i saw for 20 years. It was seen by the orthosurgeon (head of UCSD!) the Neurosurgeon said he wouldn't do surgery until my foot dropped and I pooed myself. He sent me to Orthopedic surgern when he was done wasting his time with me. The ortho surgeon did an xray in his office and showed me where the disc fell out completely and the vertebrates grafted together squishing the nerve roots. I had NO PAIN when this happened. I wondered where the pain went! The nerves died! He offered immediate surgery. I said go-for-it! and away we went! (L3, 4 and 5!) Best thing I ever did. Now the bones around it are giving me more nerve pains so I will have to deal with that shortly. Find a good orthopedic surgeon is what I tell everyone!