Pudendal Nerve Entrapment/Neuropathy/Damage

yes I have neuropathy in feet some in hands but the feet are getting very bad it been 4 years yes how well nearve bock work are they nume stiff ?

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I had bilateral pudendal nerve entrapment surgery done by Dr. Stanley Antolak well over ten years ago. He wasn’t practicing at Mayo. He has his own practice in Lake Elmo, Minnesota I think. I went there three times from Kentucky once per month for three months in a row and had three test injections prior to surgery. The injections were great for a few hours (I think they were. lidocaine and steroids). I had to go there for a week for the surgery and be in the hospital for a couple of days. I was so hopeful that this was going to be the answer for me. My pain also was in the rectal, vaginal, buttocks and down the back of one leg. I was taking massive doses of oxycontin and it wasn’t doing much except making me stupid and dependent. The surgery had a six week recovery time also. I worked as a commercial office space designer, general construction contractor and commercial property manager so being off work that long was a big problem. The surgery did absolutely nothing to help my pain. I went through all of that, spent a ton of money and got nothing for it but disappointment. I do think Dr. Antolak might be retired. He was pretty old when I saw him and I think it was about 2005 maybe. His clinic was only for pudendal pain and I was so excited that I found someone that could “fix” my years of suffering only to be disappointed again. I eventually ended up with an implanted drug infusion system made by Medtronic. It is implanted in your abdomen area on one side and a tube is tunneled to the spinal cord and attached there. In order to qualify for the surgery I had to get off all narcotics and stay off for six weeks. All of that was pure hell but I did it. The pump contains 20 mg (half morphine and half marcaine). The medicine is not systemic. It sits a small amount in your spine where it blocks the pain signals going to your brain. I don’t have to do anything as far as controlling it. I get it refilled about every 70 days. The pump last about 6 years and then needs replacing. I am on my second one. It has completely eliminated my pain but it has made a HUGE difference. It took me from wanting to jump off a bridge to having a life. I have found that stress is a big trigger even with the pump. When my stress is low my pain is almost nonexistent with the pump. For anyone out there that has tried many things (and I had) it is worth considering. Just be sure and find a very qualified doctor who can do the surgery and manage the refills (which are done with a simple needle stick). I go to the University of Kentucky Interventional Pain Clinic.

I meant to say it hasn’t completely eliminated my pain.

Thank u so much for this information! I recently had to quit my job because of pudendal nerve entrapment I just got my diagnosis about 3 months ago! I sit on ice packs every day when I sit down in order to be able to sit down I have to have ice packs. I have a cushion that I believe is more for someone with tailbone pain. I have been unable to find a cushion that I am comfortable with that is made for someone with pudendal nerve entrapment. I have not been given any type of painkillers I have been given gabapentin. It may or may not be helping me. As I said I’m not working now because I just couldn’t do it anymore. I also have pain in my feet on both sides on the inside of both heels and Going up and into between my legs so sometimes I sleep with ice packs between my legs to freeze the pain and make it stop. So if you have any insight on my next move or what I should do should I have hope should I try this pump that you’ve tried.? What type of Quetion do you sit on I’m curious? Have you done any injections have you done pelvic floor physical therapy? And did that work for you if so?

I find it awkward speaking to the ladies when I can only make suggestions from man’s side. I had rectal repair surgery back in 2006. I was suppose to “ cure my pain” and repair the tear. Repair the tear worked the pain part didn’t. What the surgery did was damage the nerves permanently an cause peripheral damage to my feet all at once. I won’t go into all the lies I was told by that surgeon and all the doctors I saw after. Just criminal the way I was treated. It took 3 and 1/2 years before I found what really happened. The only pain med I was prescribed was the Fentynal patch. Really a bad idea as I found out later. I was on that patch from 2011 until 2016 when I had a pancreatitis attack. I found out later that the use of that patch caused that problem. Because everyone’s ignorance on what Fentynal can do to body and how bad a drug it was, in my case it stopped my pancreas from working. I started starving to death. The only reason I mentioned this is it took a year of starvation and the help a nurse advocate to find a good gastroenterologist who helped me find the cause. From what I can tell you don’t need addictions problems. I do understand your situation. Sitting, standing, laying down, eating while standing, finding something to sit on for more than five minutes, trying to stay alive, I still live with all this. What I found out, and this happens is a medical problem called Central Sensitization Syndrome. A very real medical problem that a lot of doctors are not aware of. You might want to look into this. As with a lot of this chronic pain problems it turns out there is real very little doctors can help us with. They just don’t know enough about that very complicated subject and all they are trained to do is handout very dangerous pharmaceutical drugs. As for me and I am not a doctor nor someone who thinks it is wise to give out medical advice, this is how I deal with my excruciating pain. I do use ice packs for the first onslaught of pain. Then I use a heating pad for a couple of days. I had to make my own custom cushion to sit on. A lot of experimenting on that one. I did find a very good neurologist in California. He is located in San Gabriel a clinic call California Headache and pain center. I get sterile injections. Mine last a long time probably longer than than most people. Right now mine last for 11 months pretty much pain free. I still can’t sit for more than 30 minutes as it starts to become uncomfortable, but it is better than nothing. The reason my injection lasts longer is because of this Central Sensitization Syndrome. One of things about this is I became chemically sensitive. That is about the only helpful about this medical problem. The injections last longer. One the bad things about this problem is you become hypersensitivie to pain. Really hypersensitive! In my case , my entire central nervous system has become hypersensitive. This also only happens to someone rarely. Lucky me. I don’t know how much you know about the practice of practice of meditation. I use this. It is very difficult to use this when you are in pain, very distracting, but has some benefits. This might seem strange to you but exercise is very important. I have been into exercise since I was very young so I have a lot of experience in that field. I am 71 now. If you haven’t done any you would need to start out very slowly and carefully. Having to find someone who understands your age and what kinds of exercises are right for you is very important. From what I have seen there are very few people I would trust who understands this. Be very cautious about who you go to for help. You are the best judge of what you can do and your pain level, no one else is. I have spent a lot of wasted time going to the wrong people for help. I know you are looking for even some relief but in reality you might be just as stuck in hell as I am now. There is no magic cure right now no matter what anyone tells you. You are just going to have to face that fact for right now. I read about as much as I can take in on this and I see researchers trying to find answers all the time. That is still not helping you and me right now. I just try to find a level of comfort and peace. Stress of any kind makes pain worse. They work hand and hand to make our lives worse without having medical problems. If you have found anything I have said helpful try it. None of what I have said will cause you more pain.

I so relate to all you wrote. Thank you.

I wasn’t being specific when I brought this practice of eastern medicine. My doctors were trained in China, the neurologist and my acupuncturist in Korea and China originally. They explained to me how they were trained to treat the person more by taking the time to listen to the patient rather than just looking at rest test results and what they think is the medical problem. My neurologist does not use any opiates as they cause way too many other problems.

I used several acupuncturists from Asia back in the 1980s when PNE first started. Unfortunately, it did no good.Using hydocodone and now Gabipentin as well let me sleep at night...but the pain remains constant. Several of yu have offered prayers, and I appreciate that being a Christian. I have prayed daily for 38 years for God to ease or remove this pain...but He hasn't reached out as yet.

Well God Bless you sweet friend. We share the same pain and it’s the most horrible thing ever. It started about 18 months ago for me and never stopped hurting since. I had to quit my job I can’t sit down anymore unless I’m sitting on ice packs so traveling or doing anything is very limited for me now I’m standing my feet hurt so bad. I’m sorry they are going through this and I hope you get better that’s gonna be my Prayer for you. Do you have any specific cushions that you could tell me about that worked out for you?

Thanks so much for your prayers! I use cushions wherever I sit, but don't have any specific ones. They all help a little though.