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.

@swift

Dear Teresa , so sorry your suffering so much pain , I've been there have been through doctors and chiropractors and acupuncture they help but even more so lifestyle changes choices you make by what you eat and drink helps even more especially ginger root either chewing some root fresh is best, add little honey and lemon to water add turmeric root too or just have lemon and honey with turmeric add little black pepper enhances turmeric properties , to enable you to get some relief from pain i don't know how you feel about things I've personally found it helps by adding more potassium into my lifestyle has helped alot my dearest precious Son is sports naturist he encouraged me to make changes swimming heals even if just gentle swim or walking in water , sea salt in your bath and adding to cooking is another thing helps , as is pineapple believe it or not( it's properties have something that helps better then painkillers and taste great too.) Carrot juice just half hour before food or potatoe juice is another protection helps alot chillies good too I've added them to home made soups add little cinnamon either to coffee if you are a coffee drinker or with chilly soups chilly con carne or fermented food even add to porridge if you eat or Add to smoothes either spinach and bananas with raspberries and add honey and cinnamon or strawberries Apple and cinnamon with bananas yummy too. . Hope at least some of this helps you to feel better. Kind regards swift
( everyone needs to stop drinking milk I've found helps better than anything ). Plant milk, rice milk ,and others help you can still have your goodness of milk without pain that goes with it sugar too it seems to be in everything you buy . Yet with all the goodness taken out, refined beyond any benefits. Molasses is much better if you need sweetness. It has goodness for balance eating. HUG from England hope you enjoy your day all from USA and beyond .

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Thank you for such a wealth of information.

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@arlenejc Dr. Jonathan Kuttner wrote a book called "life after pain". He discusses the pain system, sensitization, mind control over pain, etc. and he has programs for this. The book is excellent. I did take his trigger point course and while it is good it didn't have anything new I didn't know about trigger points and how to relieve them.

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@richman54660

@arlenejc Dr. Jonathan Kuttner wrote a book called "life after pain". He discusses the pain system, sensitization, mind control over pain, etc. and he has programs for this. The book is excellent. I did take his trigger point course and while it is good it didn't have anything new I didn't know about trigger points and how to relieve them.

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Yh sounds like good dr , Dr J.Kuttner, thank you for useful information. Mind that thinks positive thoughts will always heal faster. Hospital's have shown people with good support get well quickly, especially when you are surrounded by those that truly care for you. Finding what work's for you uniquely is still part of what we eat and drink and area where you live and how that compacts on your health. My acupuncturist talk about pressure points and it really helps, a lot . Appreciate your sharing information. Kind regards swift .HUG from England

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@rstollery

While I am new to this forum, I have suffered with PNE since 1981. It has never formally been diagnosed by a physician, but I believe it happened after I fell off a ladder. I initially tried acupuncture, hypnosis and went to a chronic pain specialist who was unable to help. My pain in constant in the rectal area. I describe it as someone twisting a 2/4 in my anus (sorry for being so descriptive). I have been taking hydrocodone pills for more than 10 years now, which help me sleep. As I am 82, I pretty much figure I will suffer from this for the rest of my life. The "suffering in silence" comment above also applies to me. I might add that I also have tried hemp oil drops unsuccessfully for the past year or so and am looking into trying CBD ointment as well. Does anyone have satisfactory results from using CBD?

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Updating the above post, I went to a medical marijuana clinic here and the manager said forget about using CBD or marijuana if you continue to use hydrocodone (which I do 4T daily}. I went to my physical therapist yesterday, and she inserted electronic sensor patches in my buttocks near the rectal area. She feels I don't have PNE but rather a stretching of the Levator Ani flaps which cause them to be too stiff and cause pain. This is also referred to as Chronic Anorectal Pain. She is suggesting a number of relaxation techniques along with goig back to the Tenns unit patches in that area. I will update the group on any (hoped for) progress.

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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.

Liked by swift

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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.☹️

Liked by swift

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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

Liked by swift

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