Pudendal Nerve Entrapment/Neuropathy/Damage

Posted by mandiPNE @mandee, Oct 5, 2018

Hello from a new member. Am wondering if anyone suffers from the monster Pudendal Nerve Entrapment/Neuropathy/Damage? I do. And I'm very alone in it. It is a very uncommon condition, and because of its personal nature, one that many people may not be comfortable opening up about. There seems to be a more vocal/visible presence of patients in the US, AUS and France. I hope, I need, I want - for it be made more aware of here in Canada. If there is any one who suffers from it, or who thinks they might, please feel free to open up about it. Please join me in advocating for ourselves in this horrible condition.

Interested in more discussions like this? Go to the Chronic Pain Support Group.

Yes tiger balm is great hope he does hear your precious heart felt prayer , in future he promises to wipe out all suffering hope you feel better real soon changed from gabapentin, because of two many side effect's i.e. swollen feet and arms etc... Found making changes in lifestyle ie foods that upset second brain as its sometimes called , (tummy ) i found having vitamins k and plenty of vitamin c and potassium and magnesium has helped with turmeric ginger roots, and chillies believe it or not lemon and ginger root tea and spinach green smoothies with banana and coconut water and or pineapple add little cinnamon , Turmeric tiny black pepper and cauliflower. Aleo Vera is good drink too , it's amazing we didn't see it before when we know God created food and herbs to benefit us . Hope something can help you in the USA , kind regards swift HUG from England .

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@margaretob

I suffer immensely and a chiropractor told me to press on that area and loosen the muscle up. Ask about it, I have the other one with the NEUROPATHY where the legs give out with pain that moves up and down the left leg so severe that I cannot walk. Exercise deadens it so does TIGER BALM from CHINATOWN...it freezes on the skin and soaks in a little to take the pain down. I don't know if that helps you, Take gababentin twice a day 300 mgs and my insulin and that is it. I will pray for you and me, I know GOD HEARS US....M.

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Thanks for the Tiger Balm recommendation. I checked it out on Amazon and they suggested the Red version from Thailand. I will try this for my neuropathic pain.☹️

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@darlingtondoll

Thanks for the Tiger Balm recommendation. I checked it out on Amazon and they suggested the Red version from Thailand. I will try this for my neuropathic pain.☹️

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I use Tiger Balm on my sacrum and find that it calms my neuropathy. It doesn't eliminate it - but it helps.

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@darlingtondoll

Thanks for the Tiger Balm recommendation. I checked it out on Amazon and they suggested the Red version from Thailand. I will try this for my neuropathic pain.☹️

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@darlingtondoll Let me know if it works ,so far I haven't found anything that is lasting

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@iceblue

I use Tiger Balm on my sacrum and find that it calms my neuropathy. It doesn't eliminate it - but it helps.

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Hello I am suffering from the pudendal nerve entrapment monster also! Thank u I’m going to order some tiger balm

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@ahayes

I have nerve entrapment but not in that area, I have multiple nerve entrapments in my leg and recently had surgery to decompress the entrapments and insert a peripheral nerve stimulator in the event I still have pain after I heal.

I wish you luck and you can message me anytime for support. All nerve enteapments suck and there isn't a lot of awareness of just how painful and functionally limiting they can be for day to day activities. Stay strong.

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May I ask what nerve surgery you had: tarsal tunnel, tibial tunnel, peroneal, etc?

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@bkruppa

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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Muscles/ligaments can entrap nerve so going up to spinal level seems like more of a pain mgt solution and not really treating the likely source of the problem which is in your butt. The surgery is difficult and very few surgeons want to do it. Germany seems to have best pelvic center to treat these problems. France also has doctor who is really good. If you search PubMed for pudendal neuralgia, you may find more treatments.

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@lkeit

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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Peripheral nerve surgeons (dellon institute) can be helpful when other doctor's fail. They actually work with "all" peripheral nerves. However, the surgery for pudendal problems is difficult, so most pelvic surgeons don't ever learn it.

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@bkruppa

My wife's pudendal nerve pain started after a bout with shingles in that area. However, doctors have concluded that her pain is not nerve damage but something else. After 8 years of seeing all kinds of doctors the only thing she is getting from the medical industry is prescriptions for pain meds. Most of what I suggest to doctors is foreign to them and personally I believe they don't believe in any of it.

From what I've researched the pelvic area and particularly the pudendal nerve is very complex and most neuro doctors won't even touch that area since like males in the same area much harm can be done if procedures are done incorrectly. A male friend of mine had a prostectomy that apparently didn't go right and he has more problems in that area that you can imagine and all due to nerve damage.

Scar tissue can entrap the pudendal nerve as well as muscle entrapments which is what I believe my wife's pain is due to. If you didn't have this pain prior to surgery you should discuss the procedure with your surgeon in detail to see if there was a possibility of damage to the pudendal nerve. Also if muscle or scar tissue is the cause then do a search on PNE (Pudendal Nerve Entrapment) to find a local facility (doesn't have to be a doctor) who specializes in these non-evasive treatments.

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Most likely will have to travel far to find facility to treat pudendal area.

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@swift

Yes tiger balm is great hope he does hear your precious heart felt prayer , in future he promises to wipe out all suffering hope you feel better real soon changed from gabapentin, because of two many side effect's i.e. swollen feet and arms etc... Found making changes in lifestyle ie foods that upset second brain as its sometimes called , (tummy ) i found having vitamins k and plenty of vitamin c and potassium and magnesium has helped with turmeric ginger roots, and chillies believe it or not lemon and ginger root tea and spinach green smoothies with banana and coconut water and or pineapple add little cinnamon , Turmeric tiny black pepper and cauliflower. Aleo Vera is good drink too , it's amazing we didn't see it before when we know God created food and herbs to benefit us . Hope something can help you in the USA , kind regards swift HUG from England .

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Thank u I have been trying some of these things you suggested! I like eating healthier

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