Pudendal Nerve Entrapment/Neuropathy/Damage

Very good post with details and I hope I can give you a little bit of help with my PNE experience. I have suffered from this debilitating pain since I was 40 years old. I am about to turn 58. I was never able to get an answer about the cause of my PNE. Just woke up one day and there it was. I thought I was going to die from the pain. I tried everything I could come up with and everything you mentioned in your post. First, let me say, do not get a Stimulator Implant. I got a Medtronic one years ago. For the pudendal nerve the trial for the implant is very difficult. There are too many wires and equipment outside your body during the trial that keep you from moving normally. In order to know if it works, you must be able to mimic your everyday life and with that trial it is impossible. I was so desperate, I bit the bullet and had one put in. First thing is, it is a very difficult surgery because you have to be awake and alert to be able to tell the surgeon where you feel the best place for the lead wires to be placed (there are four). The issue I had is you have the control of the level of stimulation you receive and because the pudendal Nerve is located where your body bends a lot it was totally impossible to find a setting that worked because as soon as you moved positions the need for more or less power was immediate. If the need was for less then the pain of too much electrical current was brutal until you could grab the controller and turn it down. I had that a long time ago and I am told the newer technology has made them better. I still think because of the location of the nerve it isn’t a good answer. I had a zillion injections. I had bilateral pudendal nerve entrapment surgery by a specialist in Minnesota (who I am sure would be retired by now). I live in Kentucky and getting that done was a huge ordeal. I made five trips there and the trip for the surgery I had to stay for a week. After, I had to stay on my couch for six weeks (which I didn’t because I am a commercial office designer and general contractor of office space and I had work to do). After going through all of that it was a total failure. I also took narcotics for years and gabapentin (which I still take). I got up to 70 mg of OxyContin a day and it wasn’t doing much. Narcotics, as you probably already know, don’t do that much for neuropathy. I ended up having the Stimulator removed after it stayed in my body turned off for several years. Then I got a Medtronic implanted medication infusion pump system about ten years ago. In order to qualify for that I had to break my dependency on oral narcotics (which was one of the hardest things I have ever done) and stay off of them for six weeks. The reservoir is implanted in your stomach on the left and tubing is tunneled around and attached to your spinal cord. My pump contains morphine and Marcaine. The difference is it delivers a very small amount that basically sits in your spine and blocks the pain signals coming from the pudendal nerve to the brain. It is totally different than taking oral narcotics that get into your entire system and your brain. There is no complicated controls the user has to adjust. It is completely contained in your body and any medication level changes are done by your doctors office. I have to get mine filled about every 70 days (refills are quick and just a needle stick into a port in the actual pump). The pump itself took some getting used to. Just having it in my body and I am fairly thin so it was a big adjustment. The pump (but not the tubing) has to be replaced about every six years. I am on my second one and due for a third in sixteen months. I will tell you it isn’t a complete fix but it took me from wanting to jump off a building to being able to have a fairly normal life. I still have times that the pain is worse than other times but I have just learned after all these years a lot of the ups and downs have to do with stress, too much sitting, squats (yes I am able to go to the gym and work and do lots of things). You just have to find your own irritants and make lifestyle adjustments. I still supplement with gabapentin. Sometimes I have bad days and sometimes I hardly notice it’s there. You also have to learn to push the pain to the back of your mind. Dwelling on it causes stress which causes it to be worse. My life will never be pain free but compared to what it used to be the pump system saved my life. If you want to talk to someone about it, find a good pain clinic. If you are near a good university with a good pain management department I would recommend that. I go to the University of Kentucky Interventional Pain Clinic for both the pump management and the surgeries. If you have any questions I am happy to answer.

@palmorejs, Good afternoon. Thank you for such a thorough explanation of your experiences with the Medtronic pain pump.
As I read your post, I realized that I might be headed in that direction. I no longer have many pain free moments. There is always something going on to remind me that I am walking pain machine. Those damaged nerves from Small Fiber Neuropathy (SFN) only know how to send back pain signals.

I have a dear friend, a pianist, and piano teacher, who had a pump installed so he could keep playing. His body is quite deformed from multiple surgeries. For years we did yoga together. He lost control of his vehicle and hurt another person....not bad but bad enough to be concerned. The DMV took his license away telling him he could no longer drive with the pump. Tough choices.

May I ask if you have ever had an encounter with medical cannabis and if so.....how was your experience? The medical cannabis industry is developing so fast. You need a coach to make sure the choices are appropriate for your condition. So....between medical cannabis tinctures and the myofascial release massage (MFR)......I seem to still experience joy and happiness every
day. May you be free of suffering today. Chris

Hey Chris, I have not tried medical cannabis. I don’t think it is legal in KY. I did try CBD oil but didn’t notice a difference. I gave it plenty of time to see and it didn’t do anything. I am so glad you have relief and happiness! Joan

I also have nerve entrapment from lower back to growth n and use ice bags that help I have Gabapentin for it but that doesn't work 24/7 we are all pain warriors here

Hi, my name is Linda, I have never heard of nerve entrapment. I am suffering and need help bad. My nervous system has been damaged very badly from Lymes disease. I now have neuropathy, I am awake most of the night. Yesterday ,I kept dropping things and my hands and arms are really bad.i am not functioning well at all, getting worse each day. Doctors around here have little knowledge of this. I have this from my head to my toes and cannot stand this pain . I feel as though I have stuck my finger in a socket and have a steady severe buzz. Does this sound like what you have?
Seeking help please! Thanks.

Hi, my name is Linda, I have never heard of nerve entrapment. I am suffering and need help bad. My nervous system has been damaged very badly from Lymes disease. I now have neuropathy, I am awake most of the night. Yesterday ,I kept dropping things and my hands and arms are really bad.i am not functioning well at all, getting worse each day. Doctors around here have little knowledge of this. I have this from my head to my toes and cannot stand this pain . I feel as though I have stuck my finger in a socket and have a steady severe buzz. Does this sound like what you have?
Seeking help please! Thanks.

Find a Massage Therapist certified in Neuromuscular work. Entrapped nerves are part of the training for this modality.

Hi, my name is Linda, I have never heard of nerve entrapment. I am suffering and need help bad. My nervous system has been damaged very badly from Lymes disease. I now have neuropathy, I am awake most of the night. Yesterday ,I kept dropping things and my hands and arms are really bad.i am not functioning well at all, getting worse each day. Doctors around here have little knowledge of this. I have this from my head to my toes and cannot stand this pain . I feel as though I have stuck my finger in a socket and have a steady severe buzz. Does this sound like what you have?
Seeking help please! Thanks.

My wife has had pudendal nerve pain for 8 years. Initially the pain was due to a bout of shingles. However, during the recovery period I believe that something new kicked in which I believe is PNE (Pudendal Nerve Entrapment) as the symptoms are identical and to me it makes sense. The pain areas in the pelvic region are exactly where the pudendal nerve goes. PNE normally is resolved by relief of any muscle or scar tissue that may be entrapping the pudendal nerve. There are many facilities around the country that treat this condition and the treatment is massaging, dialators, etc. of the muscles that could be entrapping the pudendal nerve. My wife gets some relief from this kind of treatment but it is temporary and it only helps some. We have been to many facilities including the Mayo Clinic but the doctors don't seem to recognize PNE as mostly they want to use pain meds as a course of action. We want a solution. We have tried nerve blocks in the caudal area as well as lower in the buttocks with zero pain relief.

There is a muscle group that entraps the pudendal nerve and that is the sacrotubernous ligament which can easily entrap the nerve. There are specific massaging techniques that can relieve this pressure.

Given that my wife's pain varies doctors have agreed that the nerve is not damaged. This is good news as apparently there is no treatment for a damaged nerve.

We have looked into neurostimulators. My main concern is affect on other nerves in the probe area as well as other more serious issues. I contacted two companies about their devices and neither company has any data on helping pudendal nerve issues so we would be on our own as far as what to expect. However, I had heard about paralysis as a possible side affect. Again I contacted both companies regarding the frequency of this issue but neither would respond to my requests. That was unfortunate. Then we find that a neighbor down the street from us was paralyzed due to this procedure. Now I don't want to scare people out of going through this procedure as this is a case of one out of ...............I don't know. A 100. A 1000, A 10,000. I just don't know. A doctor at Mayo told us that 20% of these need to be readjusted (surgery) within 5 years and over time they become less and less effective. Given all of the above we chose not to go through with the procedure.

Another neuro doctor is suggesting that the pain is due to inflammation of root of the pudendal nerve which resides at the spinal cord where it connects to the spinal column. Here they want to inject steroids to reduce the inflammation. Results may be nothing, good for two weeks, two months,????? They can't predict. IF this is the source then my choice would be to determine why it is inflamed at this area and resolve this issue rather than throwing meds at it.

We are also looking into inversion tables as a source of relief. The theory being that maybe her spine is shrinking due to aging and therefore entrapping the pudendal nerve. Also since she favors sitting on one side to relieve the sensitive side maybe the spine got reformed and therefore entrapping the nerve. So we will give it a try to see what happens. We have also tried acupuncture, all the suggested vitamins for neuropathy, etc., but with no success. I read a lot of articles where sugar can cause nerve pain issues to heighten so we will be doing a sugar free diet for a couple of weeks to see what happens. MRIs show nothing but a dual frequency laser treatment has helped some but for only a day or two. My wife is on gabapentin and CBD oil. CBD oil takes some of the edge off of the pain so she uses it frequently.

Scar tissue may be another cause of entrapment. Women who have an an episiotomy during child birth can develop scar tissue in this area which is close to where the pudendal nerve travels. Haven't found any doctors who buy into this theory but a lot of my wife's pain emanates from this area so I am suspect. A PT friend of mine says that when a rotator cuff is torn in the shoulder scar tissue can form around a nerve and cause pain. In these cases surgery has helped release the entrapment. However, the nerves in this area are not complex nerves like the pudendal nerve which I guess is one reason most doctors don't want to do anything invasive since they may end up causing damage to the nerve which would result in even more pain.

Sorry for the long post. However, I wanted to present everything that we have done. I would like to hear from the rest of you about what you tried and what were the results.

@bkruppa There is not a lot of scientific studies in the US. These enzymes have been used for many years in Japan and elsewhere. There are some reviews of the enzymes on websites such as WebMD and Healthline. I did come across an article from a medical journal recommending nattokinase as an anti-thorombolytic - but I'm having a hard time finding it. Here is a review about Serrapeptidase, attached.