Pudendal Nerve Entrapment/Neuropathy/Damage

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.

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I am curious to know if you have any further successes? I had pelvic vein embolization on November 30,2018 as my pelvic veins were causing leg vein issues, selling and pain. I never had pelvic pain. I woke up the day after the surgery with numbness and tingling in my buttocks and vulva area. The surgeon said it would pass. I had to wear compression shorts for 30days and was in agony. My insides were pressing agains my outside which was being compressed by the compression shorts. I finally demanded to be seen by the surgeon 37 days after surgery and 1 week after being out of compression shorts. Doing my own research I said I thought I had pudendal neuropathy - I am textbook case for all of the symptoms of pain, tingling, burning and numbness and pressure. I feel lucky not to have any incontinence issues. My surgeon said since it is inconsistent it is not damaged and will improve, that I just need to be patient. Meanwhile I am trying to go to work, care for my family and have a normal life. Some days are better than others. Today is a bad day, and it isn’t an illness you really want to publicize as it is such a private area of the body. Additionally I have suffered from fibromyalgia for,the last 10years. I don’t take any prescriptions, and try to be sugar and gluten free to reduce inflammation.

Does anyone have any advice for me? I live in Cincinnati. I don’t know what type of doctor to see- the surgeon has never in 20years had this happen. I would love to know what type of doctors other are seeking for help, and what is helping. I would be very reluctant to have another surgery since I am significantly worse off than when I had the first procedure.

Thank you

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Hi,
How did the inversion table work for her nerve? I was just thinking that myself. So glad to find a post. Debbie

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@bkruppa Myofascial conditions are not likely to cause constant pain. It is often variable. Also, the compression on the nerves isn’t equal to damage. Remove the tightness and you may get partial or full relief. There are stories of people who’ve had pain for years that can be relieved by the proper treatment. Yes, you may never know the source of the pain - but mainly look for what works. Good luck.

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We currently are looking into and having treatments called MFR or MyoFacialRelease. This is the area between the outer skin and muscles or between two muscles. Normal action of this area is to allow one part of the body to slide over the other like one muscle over the other muscle. The theory is that if one is inactive for a long period of time (like my wife was with the shingles episode and bed ridden for about 3 months) this layer can become hardened and not work as it normally would. It can also entrap nerves that pass through this area which can cause pain. Treatment for MFR is specialized massaging techniques that help restore this area to it's original fluid from a harden state. We have also tried some new dual beam laser treatments that offer temporary relief but nothing permanent.

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I have begun my first MFR treatment of three, and I have begun to have less neuropathy in my my feet, after 2 days, and I have a sense of feeling better overall with my body. I’ve had CRPS and nerve pain for several years and this is the first treatment that I feel might really give me some long term pain relief. You need to be diligent in doing exercises st home, and communicate with your therapist what hurts and what doesn’t. I feel it’s a great procedure that had been producing results. I have tried some many different treatments, epidurals, neural stimulators, etc and this procedure has given me some hope for getting some long term relief. I know it’s early but as we know, it’s good to be optimistic.

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I have begun my first MFR treatment of three, and I have begun to have less neuropathy in my my feet, after 2 days, and I have a sense of feeling better overall with my body. I’ve had CRPS and nerve pain for several years and this is the first treatment that I feel might really give me some long term pain relief. You need to be diligent in doing exercises st home, and communicate with your therapist what hurts and what doesn’t. I feel it’s a great procedure that had been producing results. I have tried some many different treatments, epidurals, neural stimulators, etc and this procedure has given me some hope for getting some long term relief. I know it’s early but as we know, it’s good to be optimistic.

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Great. Get ready to feel the grass under bare feet again. It takes time and commitment. I an sure that the only reason I am still driving is because of MFR. Be safe and protected. Chris

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