Pudendal Nerve Entrapment/Neuropathy/Damage

I don’t know if you are still reading this post but when I read your post, a lot of it was me. I have suffered from PNE for 18 years. I can tell you I did get a stimulator implant and it was a complete failure. I have been told technology has gotten better. My thought about it is the stimulator works by basically sending a different sensation to the brain that is designed to override the pain. The issue for me was because of where the pain is. The stimulator is controlled by the patient and as your body moves the level of stimulation changes due to your body position and then you are scrambling to readjust the controller. For me, and my pain is in the genital area and down the back of one leg and the stimulator was a complete failure. I ended up having another surgery to remove it a few years later. I also had bilateral PNE surgery. It was a major surgery and done by a doctor who had spent many years focusing only on PNE issues. I had to travel quite a long distance to this doctor several times and the surgery was a complete failure which of course leads to the emotional disappointment and depression of going through all of that for nothing. I’ve done all of the things you mentioned. Acupuncture, invasive physical therapy and spent years taking narcotic pain meds which help but do not eliminate the pain. In the end, what finally ended up helping me was an implanted drug infusion system. In order to qualify, I had to break my chemical dependency on opioids and be off of them for six weeks. This allows your brain cells to go back to normal functioning and basically clears your brain cells of the opioids. The implanted infusion system does contain morphine and marcaine. It holds only 20 mg. It does not put opioids back into your entire body. It is implanted in your abdomen and tubing is tunneled and sewn to your spinal cord. A tiny amount of the meds are pumped into your spinal cord which basically blocks the pain before it gets to your brain. You are only using 20 mg about every 3 months. The whole system is completely implanted and your dosage is controlled by your doctor. There is no controller to keep up with, no battery to charge. They last about six years because the battery is built into the pump. I am getting ready to change out my second one for my third next month. It is not a magic bullet but if I didn’t have it I truly think the severity and location of my pain and the lack of knowledge by doctors to provide help would have driven me to suicide. I still have pain but not all of the time and not nearly as severe. The dose of meds is just enough to sit in the spinal cord to block the pain and doesn’t cause the side effects of opioids. I also supplement that with Gabapentin. Stress will really ramp up the pain so it is important to keep the stress in your life as low as possible. Sitting for long periods in hard chairs is a big trigger. Sadly, intimacy is still painful but possible with an understanding partner. I truly do not know how I would have made it without this system. It is manufactured by Medtronic and you need to find a good pain clinic and an experienced doctor. I go to the pain management clinic affiliated with the University of Kentucky and have for a long time. For friends, partners, relatives, understanding is crucial to the patients mental health and helping to keep the stress down.

Yes but sitting in hard chairs for extended periods is a problem.

@cake @vklittle61 Most doctors won't operate on this area. It's too vascular and too many nerves. They would generally do more harm than good, I believe. Try exercise and change up your nutrition to the suggestions I posted above in this thread where I reviewed Dr. Fors' book (I was very detailed in that post). Also, be aware there are many YouTube videos about strengthening / stretching the pelvic floor (which includes the levator ani muscles and the obturator internus muscles as the pelvic floor main component). Also, things like Pilates Reformer and the TRX core exercises strenghten and get the core and pelvic floor moving (Kegels are just one exercise to strengthen the pelvic floor). Do what you can - these other exercises could help dramatically, too. If those are too strenuous, try some of Thomas Hanna's "Somatics" exercises. These are based on simple movements and stretches with an emphasis on also sensing tension but also sensing when you've regained relaxation. Again, there are all manner of videos on that on YouTube (he also has a book called "somatics" where they show the stretches / exercises). Good Luck.

R you speaking of Spinal cord stimulator or a pain pump, pls??

After 8 weeks of all these monster symptoms, I had a Nerve Bock of the Pudendal Nerve, under CT scan guidance. Cortisone & lots of numbing meds were injected.
I got NO improvement, SO....it is ruled that I do NOT have PNN.
In researching & with my Dr & chiropractors help, tomorrow I go to an highly recommended Pelvic Floor Therapy! I spoke with one of them. It's MORE THAN LIKELY something triggering these pelvic floor symptoms.
Some of their therapy is uncomfortable, but she says I should start getting some relief with these treatments. I am VERY hopeful!!

I hope you get some relief. What country or state are you located? I've had pudendal neuralgia symptoms for 20 months now.

Bless your heart! I am in Charleston, SC. Where are you? Please send me a private message if you want to exchange contact information and you want to discuss anything further. We are both ' poor souls', but will figure this out !!😍

I'd love to converse. This is such a lonely condition. I'm in Wisconsin. I'll email you later or tomorrow.
Helen

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Thank u sir !!