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 group.

@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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@bkruppa

Good feedback. Thanks.

My wife's situation has one added symptom that I don't see in any of these discussions and that is swelling in the area of pain. The question would be does a compressed/irritated/entrapped nerve cause swelling? The other condition that my wife experiences is the level of pain varies. Most of the time it is a 7 or 8 while other times it is a 2, 3, or 4. We try to look back to see what she did different but never can put a good case together as to the cause. Any ideas? Different muscle tensions?

Saying that everything is connected together is good information. I notice that massaging of muscles in the hip area and upper buttocks area gives a lot of help to her and these areas are far removed from her areas of pain. I understand that there is a sacrotuberous muscle in the buttocks that is directly involved with the pudendal nerve and if it is tensed up it will compress the nerve and cause the type of pain that is being discussed here. Usually it takes an experienced therapist to massage this properly to relieve the tension.

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Go get a MRI with contrast to your pelvic area as you might have Arachnoititis cause by injections or surgery. Look up this disease and get help with doctor Forest Tennant on Google.

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@richman54660

@bkruppa I'm sorry to hear about there being so much pain. Yes, nerves can promote swelling. They can also affect vascular supply to areas, too. However, swelling can also be from poor venous or poor lymphatic return (and even that can be affected by nerves or for other reasons).

It is quite possible that your wife's pain is actually generated by the areas above the pain as "referred pain" (and tension) can travel far. One thing to consider is self massage with a Rollga roller (there is both a Pro and a soft Rollga model). These are curved foam rollers (rather than flat ones) and are a little easier to work with than rolling on massage balls in case you think some of the pain is from myofascial (muscular) tension compressing the nerve. These work well all over the body including legs, glutes, upper back, etc. They helped me get rid of tight IT bands and other areas of tightness I had in my legs and glutes. They are sold on Amazon and there are instructional videos on the web (youtube; you just don't roll on the lower back as that can trigger spasms). That way you can do self massage regularly rather than relying on massage therapists. You can vary how much pressure there is if you use these – so massage can be gentle or aggressive and you can also dwell on an area of tension to get rid of "trigger points". One thing too – the therapist I'm working with for the injury massage I get (described in my prior posts) mentioned his opinion after 28 years – if pain changes with time it probably is not structural (i.e. not bones and ligaments). For instance, my lower back pain comes and goes – but since I started doing TRX suspension core workouts and certain stretches I haven't had a back ache since Christmas. Which leads me to think my back pain is muscular. I'm still trying to get rid of some sitting pain – that causes tension near the tuberosities for me. Ultimately, a pinched nerve somewhere (somewhere in the lumbosacral region) is probably causing that. Also, stretching and whatever movement that is tolerated sometimes helps (walking, recumbent bike, ellipticals, etc., if able). Good luck. If massage helps, I would recommend the Rollga.

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Have you ever had an MRI of your pelvic area with contrast to see if you have any other conditions such as arachnoiditis? I did and found out but I had this terrible condition caused by injections and surgery and doctors will not tell you about it.

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@palmorejs

I read your post and it made me cry for you. I tried everything I could possibly try including an extensive surgery. My pain was so bad I considered suicide just to end my pain. Finally, after years of narcotics, invasive physical therapy, failed spinal cord stimulator surgery, lots of other drugs, and lots of doctors, I got a Medtronic Implanted Drug Infusion Pump. This pump does NOT provide systemic medication which is the advantage. I had gotten up to a dose of oxycontin that was so big I couldn’t increase it anymore and function. I was also taking percocet for breakthrough pain and gabapentin. The pump is surgically implanted in the side of the abdomen and tubing tunneled to the spinal cord where it is attached to the spine. The pump holds 10 mg of morphine and 10 mg of marcaine and that amount lasts about 70 days depending on your settings. It delivers a tiny amount of medication into the spine per day where it blocks pain signals going to the brain. The BIG positive is it does not distribute systemically thus eliminating the side effects of narcotics. The pump lasts about six years before it needs to be replaced and the only maintenance is a quick visit to have it refilled every couple of months. There is no exposed part or control that you have to deal with although getting used to having the pump in your stomach takes some getting used to. Adjustments are made by the doctors office. I am now on my second one so I think I have now had it for about ten years. I cannot tell you the difference it has made in my life. I will say it does not completely eliminate the pain and my pain is in a very personal area but it helps so much that I can function and have some normal life. Sometimes I barely notice my pain and sometimes it flares up but nothing like it was. I can tell you that stress will flare it up so it is important to try to keep your stress down. It is manufactured by Medtronic and you can check it out on their website. If you decide to consider it find a reputable pain management doctor. Preferably at a large university medical center pain management department. I go to the University of Kentucky Interventional Pain Management Clinic.

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I have had Pudendal Neuralgia for over 4 years and it has gotten much worse over time, but very slowly until a couple 2 months ago. I have tried just about everything that I've heard on this forum except for the surgery. The implanted pump sounds promising to me. Was your pump implanted at the UK Interventional Pain Management Clinic?

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So sorry to hear this has gotten worse. If you decide to have the pump implanted I hope it works for you. Many prayers for better days.

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I have pudendal nerve damage from giving birth to a frank breech baby vaginally..Fecal incontinence occurs when stool is not sufficiently solid. Things have progressively become worse as the 45 years since that birth have passed. Several years ago a doctor wanted me to go to Philadelphia to have a trial sphincter implanted. Didn't go. Has anyone experienced this nerve damage?

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@barbbie

I have pudendal nerve damage from giving birth to a frank breech baby vaginally..Fecal incontinence occurs when stool is not sufficiently solid. Things have progressively become worse as the 45 years since that birth have passed. Several years ago a doctor wanted me to go to Philadelphia to have a trial sphincter implanted. Didn't go. Has anyone experienced this nerve damage?

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@barbbie Not don't have this but have a 46 yr old hemorrhoids have nerve damage from back fractures

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