Pudendal Nerve Entrapment/Neuropathy/Damage

I have pudendal neuralgia and have had pelvic pain for many years. I finally have come to the possibility that the nerve sensitivity is being caused by the brain, that is why the anti seizure medication may have rest the brain. It started after microwave for enlarged prostrate which caused retrograde ejaculation. The pain would come and go originally and the pain was in the perinium area and the penal area feeling like I had to go and like a uti but urine samples never showed anything. I was put on heavy antibiotics for possible prostatsis. They also did surgery to clean up a cyst and “debris”. Over 7 years symptoms were getting worse and when it occurred I also started having fecal issues.
A few years ago I was told I might have prostrate cancer and an MRI pirad of five made it most likely. I was besides myself because I was having all these symptoms and just accepted it. I was extremely stressed and I got a horrific burning sensation in the perinium area. They took a urine test which showed nothing and said it probably a nerve pain. The burning went away but the perinium pain remained until had the prostrate removal surgery and the pain was gone and I felt great. This came the sitting pain, rectal urgency and feeling I had to go continuously. After several years the pain is at a manageable level along I do not aggravate the pelvic area. Even stress causes tension of sphincter muscles causing pain. I have nerve block, physical therapy, and have tried many other things but have learned to live with the pain. I now think that I was getting uti’s in the Seminole vessels and the uti was not showing up on urine sample because I had retrograde ejaculation and it was blocked. I have learned the pain on the tip of the penis like a uti is not occurring there but upstream it just feels like it is there because it is the end of the nerve. My theory is I kept having uti’s and my brain has made the sensory hypersensitive. I continually have pains occur in the pelvic area and any muscle tension and pressure can set off pain At times just a cough sends a shooting pain in my groin area down the leg making me want to collapse. I have gotten pain so bad I think the pain maxed out. At this time I could not get a signal through to go, I thought my bladder was full but could not tell, I pushed on it finally and I wet.
The thing is with my pain I am able to fall asleep, as if the brain shuts off the pain.
Almost anything can trigger pain in this including being stressed. I am hoping if I do not stress the area that the brain will desensitize like my shoulder nerve which was damaged in a car accident. The pains I get at times stops me in my tracks at time because I am afraid something has been hurt but it will go to a lower pain level.
I have a uti currently, my PSA is rising and they indicate if it gets to the value of cancer reoccurrence they would do radiation, and they recommend an AUS valve for my incontinence but I am afraid to have anything done in the pelvic area that can make the pain become lost. It is hard with the amount of pain I am in that nothing is wrong. And when it gets real bad lately it has been short periods of time
I am tired of doctors making comments which I think if they have the pain I have they would not say that
Sorry about going on so long but I believe my pain is my brain magnifying the sensory portion of the pudendal nerve because of the repetitive utis and it became chronic
I wish everyone happiness. I have learned to laugh and smile which helps

Nerve stimulators can move around, which seems ridiculous but that is the biggest problem. When you first do a trial, they often place it with a coil and control it from the outside. This moved in my case, so I gave up on it. I don't know how a coil can move, but I see this problem everywhere. It feels great when you first get it, so they do work well. Maybe in the future they will figure out a way to make them more reliable longer term.

After 14 years sitting on a donut, I was given an off-label anti-seizure medicine for an unrelated issue and in 2 weeks, my pudendal nerve pain was gone. My pelvic doctor mentioned that she had heard of this. Duh! Why didn't she tell me?

Off label. Liability

Off label meaning not for the illness the medication was intended. I took it for daily persistent headache/migraine.

The same thing happened to me in 1998. Pelvic surgery lead to Pudendal nerve damage. I developed a neuroma and my doctor in his infinite wisdom said the pain was in my head even though I lost 30 lbs and could barely stand or sit. I had a young family to look after back then too. It was brutal. I decided to leave this amateur and seek help with doctor's at an Ivy League hospital. They did pain mapping laproscopiclly and did a series of lidocaine injections. There was 40-50%
improvement and in some areas,the pain never returned! I was still in too much pain so the pain center docs tried me on seizure meds ( which made me feel spaced out everyday. )After trying other things they finally said, no more fooling around and I was put on a duragesic pain patch. That was when I got my life back! I tolerated the meds well for years! I recently moved south where the doctors are paranoid about meds. So even though I was doing well for 20 years, they've reduced my meds causing me pain symptoms again because of the hype. It doesn't matter that I've been a good and successful patient for so many years. So I reluctantly agreed to a nerve block which didn't work. I've found out one important thing in my research. Go to a doctor who's an Anesthesiologist. The MDs and DOs who are NOT anesthesiologists have less understanding and training of the nervous system and do not spend only 6 months or so learning to do injections (which in my experience has been hit or miss.) My pain doc up north who was also a trained Anesthesiologist was definitely a better pain management doc....(I miss him). Many pain patients are suffering because they're under prescribed when there's actually a small percentage that abuse their scripts or end up in trouble. Its too bad that the ignorance out there is general, because most of us want to be pain free and live life. We're not interested in getting high or abuse our meds. I recently heard that there are MRIs offered to scan nerves to pinpoint those that are damaged. If you opt for some Physical Therapy, find a pelvic floor DPT who understands nerve issues with a lot of experience. It's a battle trying to find the true expert providers out there but don't give up, advocate, research,and question everything!!! Knowledge is power ( as long as its found in the right place ( like Mayo) Hope this helps.

What is the name of the medication?

Topamax

All of what you said is totally excellent!

200-300mg of Lyrica worked for me