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mandiPNE (@mandee)

Pudendal Nerve Entrapment/Neuropathy/Damage

Chronic Pain | Last Active: Apr 20 10:08pm | Replies (443)

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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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Replies to "My wife has had pudendal nerve pain for 8 years. Initially the pain was due to..."

Possibly different stretches and exercises could help? Some of the nerve entrapment could be due to myofascial tightness in the inner musculature of the hip that could cause nerve irritation / compression? These could include various exercises that release the hip flexors, strengthen (and move) the core muscles, etc. I have had a complex pain syndrome that partially responds to stretching and exercise (involving tight quadratus lumborum, tight psoas / all the way into diaphragm, etc.) as well as tight glutes, hamstrings, IT band, etc., all due to something compressing spinal nerves / other nerves. Yes, I believe some symptoms map near pudendal nerve functions, too, for me. One component of my stretching is also very deep breathing which helped relax the psoas / diaphragm issues. I've been working with a certified massage therapist who uses active release and ultrasound stimulation all over (and prior with a chiropractor that used electrical stimulation / ultrasound on the glutes specifically to loosen them up). These are unusual treatements and need to be sought out – but they did help me and a lot of that resolved and didn't come back – at least not to all the peripheral areas.

That maybe isn't what you want to hear – it would be great to have a simple surgical solution – but quite possibly tight muscles could cause / exacerbate this problem as I believe they are doing for me (See the book "a headache in the Pelvis" by Wise and Anderson who argue a lot of the pain syndromes that map to the pelvic area are caused by myofascial pain. In these cases, symptoms are very much eased by the stretching and exercise. I use a TRX suspension system for core exercises, an aeropilates 700 Pilates system for some pilates exercises (but floor work is good, too), common stretches (especially those for piriformis syndrome and to release QL, psoas, hip flexors and lower back and hamstrings). I use an inversion table (I do have lower lumbar DDD with some spinal stenosis, among other things). I sit in a recliner when possible or use cushions as I still have some sitting pain, too.

Good luck. Please disregard if you've tried this or you feel it's not relevant (and, of course, I don't want to offer medical advice here as I'm not a medical doctor).

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

New member and first response here. I have had this condition (pudendal nerve entrapment) since 2012, and I have seen a number of specialists who have conducted all of the studies you mention and performed all of the procedures you mention. The end result, I'm sorry to say, is that the pain persists in much the same way as it does for your wife. I am male, and most of the specialists I have seen deal with this issue in female patients, which makes diagnoses and treatment even more difficult. For pain, I have been prescribed Diclofenac 75mg twice daily since my first (non-related) cervical spine surgery in 2009. The medication does not affect the pain in the pudendal region, and at this point my new primary care physician at Mayo is concerned about long term use in general.

I can certainly empathize with folks who have said that this condition is a 'lonely' problem, both because it is more rare in the general population and there apparently is not much data for physicians to access. It is also very difficult to have a conversation about the issue with anyone other than a physician or a family member, so I typically 'suffer in silence' most days, and feel grateful on the rare occasion when the pain is negligible for a day or so.

@bkruppa I am not sure where you are located at, but I know of a physical therapy facility in Tustin Ca that has had great success of relieving PNE through physical therapy, and there is a neurosurgeon at barrow neurological institute in Phoenix AZ that is very well known in this field.

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

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.

Hi,
Did your wife have any success with the inversion table? Thank you so much! Debbie

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.

I don’t know if you are still reading this post but when I read your post, a lot of it was me. I have suffered from PNE for 18 years. I can tell you I did get a stimulator implant and it was a complete failure. I have been told technology has gotten better. My thought about it is the stimulator works by basically sending a different sensation to the brain that is designed to override the pain. The issue for me was because of where the pain is. The stimulator is controlled by the patient and as your body moves the level of stimulation changes due to your body position and then you are scrambling to readjust the controller. For me, and my pain is in the genital area and down the back of one leg and the stimulator was a complete failure. I ended up having another surgery to remove it a few years later. I also had bilateral PNE surgery. It was a major surgery and done by a doctor who had spent many years focusing only on PNE issues. I had to travel quite a long distance to this doctor several times and the surgery was a complete failure which of course leads to the emotional disappointment and depression of going through all of that for nothing. I’ve done all of the things you mentioned. Acupuncture, invasive physical therapy and spent years taking narcotic pain meds which help but do not eliminate the pain. In the end, what finally ended up helping me was an implanted drug infusion system. In order to qualify, I had to break my chemical dependency on opioids and be off of them for six weeks. This allows your brain cells to go back to normal functioning and basically clears your brain cells of the opioids. The implanted infusion system does contain morphine and marcaine. It holds only 20 mg. It does not put opioids back into your entire body. It is implanted in your abdomen and tubing is tunneled and sewn to your spinal cord. A tiny amount of the meds are pumped into your spinal cord which basically blocks the pain before it gets to your brain. You are only using 20 mg about every 3 months. The whole system is completely implanted and your dosage is controlled by your doctor. There is no controller to keep up with, no battery to charge. They last about six years because the battery is built into the pump. I am getting ready to change out my second one for my third next month. It is not a magic bullet but if I didn’t have it I truly think the severity and location of my pain and the lack of knowledge by doctors to provide help would have driven me to suicide. I still have pain but not all of the time and not nearly as severe. The dose of meds is just enough to sit in the spinal cord to block the pain and doesn’t cause the side effects of opioids. I also supplement that with Gabapentin. Stress will really ramp up the pain so it is important to keep the stress in your life as low as possible. Sitting for long periods in hard chairs is a big trigger. Sadly, intimacy is still painful but possible with an understanding partner. I truly do not know how I would have made it without this system. It is manufactured by Medtronic and you need to find a good pain clinic and an experienced doctor. I go to the pain management clinic affiliated with the University of Kentucky and have for a long time. For friends, partners, relatives, understanding is crucial to the patients mental health and helping to keep the stress down.

I have an extensive episiotomy scar (50 years ago) and now suffer w/ nerve entrapment. Considering CBD oil and wonder if she is taking it internally or using it topically? Working w/my chiropractor/naturopath but progress is very slow and pain constant. I have increased my calcium supplements to take the edge off the pain, a little help but not enough.

I’ve been told i have polyneuropathy in my legs due to a build up of arthritis and bulgin disks in my sacral and lumbar region. I did the normal protocol with my psiatrist,including physical therapy,anti inflammatories,epidural and an EMG test which pinpointed my polyneuropathy(multiple nerves). The Dr says there is no surgery to correct this but i am consulting a neurosurgeon and a neurologist because i believe the more specialists you see the better off you are because medicine is s compartmentalized. In the meanwhile,although its not currently indicated for lower back pain i find Voltarin is extrememly helpful in managing the pain along with Advil and certain stretches i do. Hope this helps,Lou

Everything you have done, I have done. Nothing works. CBD 200mg does nothing for my pain. THC 10-15 mg is a distraction so I use that. Research Abbot laboratories re stimulator. Call them up, talk to them. I'm having another try at it with 3 leads placed instead of one, hoping that come of them stay in place. I have had surgery to move the nerve so it wouldn't hurt, but it didn't work at all and cost me $25,000, uncovered. DO NOT GO TO DR LEE DELLON IN BALTIMORE. HE IS A TOTAL FRAUD AND PRAYS ON DESPERATE PEOPLE.

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