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.

@donfeld

If you are in states that it's completely legal for recreation you get better quality marijuana and I know that a lot of people do CBD, but I believe the THC is a very important ingredients. What does everybody think?

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I think you are correct. It's legal in my state of NY and I'm legally certified to purchase through a dispensery. I feel its safer, better quality and guided use. CBD is for calmness/relaxation. THC is for pain.

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I am fairly sure I have Pudendal Neuralgia. I have had this problem for over a year….extreme pain….have you found any medications that help?

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@kimp

I am fairly sure I have Pudendal Neuralgia. I have had this problem for over a year….extreme pain….have you found any medications that help?

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Hi kimp, I think I may have this too. So far I just take tramadol, use a TENS unit, and Biofreeze. Sometimes a heating pad. Are you in the States? I'm in Wi.

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@rwinney

I think you are correct. It's legal in my state of NY and I'm legally certified to purchase through a dispensery. I feel its safer, better quality and guided use. CBD is for calmness/relaxation. THC is for pain.

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That sound great, I know years ago it sure helped with Anxiety & depression. When the DR’s at VA told me to try it they then tested me and canceled all my pain med’s cause I tested positive for THC. When I told the VA DR’s it didn’t help much with my pain he told me I wasn't doing enough. Honest I promise that is what the VA doctors told me. I hope the stuff works for you I really do and I wish it would work for me. I have been in constant pain since 1970 my first bad wreck. So I hope you can find relief cause I know how bad it is to live in chronic pain for years. Doctors have told me surgery would possibly put me in a wheelchair for the rest of my life. So I have been living with this and am so lucky that my family hasn’t given up on me and got rid of me.Cause I can’t stand myself most of the time. Sorry for dumping that I just have real bad day’s. I sure hope it help you and I know it would help me at least with the part where I am mean but if I use it then I don’t get any help with the constant pain, that won’t let me even sleep through the night. Thera-Gesic topical cream does help me at least get to sleep for a few hours. I know that topical cream is very hard to find but if you can it does knock the edge off long enough to do somethings. Try to find and give it a try. I found at Amazon.

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As a male, diagnosed by PT with pudendal compression/entrapment. It was painful in legs, genitals, cold in feet. After 8 weeks of exercises and needling, I am 95% back to normal. I continue to the stretches and yoga, but have not fully returned to sexual activity, mostly due to reticence of that being too early. Hope this helps. But until I had a diagnosis and started to feel gradual results, I was a mental mess. It's very unsettling malady. Mine reportedly brought on by years of bad computer sitting.

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@doingbetter

I was positively diagnosed with PNE by Doctor Jordan in Santa Monica, CA, with a proprietary procedure in 2004; it was confirmed by specialists in Houston Texas in 2005. I agree, though, that pelvic floor disorders are notoriously complex; PNE did not explain all my symptoms, just most of them. I got PN bilateral nerve release surgery in mid-2005, with initial improvements, but within 6 months was doing poorly again. Then I changed my entire work lifestyle and did substantially better over time, eventually becoming nearly completely pain-free by 2010. I relapsed in 2012, but refused to change my life again until late 2013 when a specialist (Dr Weiss, San Francisco, highly recommended if he still practices) told me to take 3 months off work and stop sitting altogether during that time or I'd become a bedridden invalid. Shocked, but obedient, I did that. I returned to work thereafter 20 hours/week. Now in 2018 I can work 36 hours/week, sit up to 2 hours depending upon the surface and what I am doing, drive myself to store, and I'm down to just taking 30 mg Cymbalta a day (I was taking 3200 mg of Neurontin/day back in 2004!). Life is SO much better. Strongly suggest you look up pudendalhope …excellent resources for PNE sufferer.

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Thank you for your Post!! I have had this for about eight years and the only thing that helped me was to stop sitting. It's a long story but it came back because I didnt leave well enough alone and now the pain is like it was at first. I'm going to stop sitting because that is what a Doctor in Minnesota told me to do years ago and that's what i did. So to see your post gives me new hope! I am at a place in my life where i am able to not sit for 3 months or more if need be. So I'm going to do that. Thank you.

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Hi are you still on Mayo connect. You are not alone

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@angellagalante

Hi are you still on Mayo connect. You are not alone

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I don’t regularly participate, but I get alerts for a couple of discussions I’m in. What made you reach out?

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@angellagalante

Thank you for your Post!! I have had this for about eight years and the only thing that helped me was to stop sitting. It's a long story but it came back because I didnt leave well enough alone and now the pain is like it was at first. I'm going to stop sitting because that is what a Doctor in Minnesota told me to do years ago and that's what i did. So to see your post gives me new hope! I am at a place in my life where i am able to not sit for 3 months or more if need be. So I'm going to do that. Thank you.

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@angellagalante i have detailed posts about the stretching exercise and dietary supplements that significantly reduced my sitting pain. They are in this thread, pain in the butt thread and in the chronic pain thread. It is possible you have pelvic floor issues that can be reversed. There were numerous posts that might be helpful. Good luck.

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@mimi444

I don’t regularly participate, but I get alerts for a couple of discussions I’m in. What made you reach out?

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I saw your post from maybe a year or two ago and you wondered if there was anyone else who suffered with the pudendal pain. I do and I have had it for years but it comes and goes. recently i went to PT (pelvic floor) and they did something that made it worse. Really bad again as I was at the point where pain was minimal and I could sit for short periods. Now I'm back to not sitting again. For me that has been the best thing to do. If possible just do not sit for about 3-4 months and the pain will subside. Nerves need to heal and regenerate and not be inflamed. But coming here to this thread I found I am not alone. I was on a different thread years ago and when I started feeling better I stopped. Well here I am.

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@angellagalante I’m sorry your pain came back. Thank goodness you know what to do to relieve the pain. I’m glad you’re back on Mayo Connect. It’s a great support. I’m struggling with the side effects of Duloxetine which I take to help control my pain. It’s an antidepressant with a pain component. I was diagnosed with Complex Regional Pain Syndrome as a result of my TKR in March 2019. I’m having tremors, my ligaments & tendons are in spasm, I’m foggy & I’m having difficulty focusing & concentrating. It took me an hour to type this reply. It’s exhausting.

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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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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.

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Yes but sitting in hard chairs for extended periods is a problem.

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@vklittle61

Wow I don’t l ow about removing thst muscle

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@cake @vklittle61 Most doctors won't operate on this area. It's too vascular and too many nerves. They would generally do more harm than good, I believe. Try exercise and change up your nutrition to the suggestions I posted above in this thread where I reviewed Dr. Fors' book (I was very detailed in that post). Also, be aware there are many YouTube videos about strengthening / stretching the pelvic floor (which includes the levator ani muscles and the obturator internus muscles as the pelvic floor main component). Also, things like Pilates Reformer and the TRX core exercises strenghten and get the core and pelvic floor moving (Kegels are just one exercise to strengthen the pelvic floor). Do what you can – these other exercises could help dramatically, too. If those are too strenuous, try some of Thomas Hanna's "Somatics" exercises. These are based on simple movements and stretches with an emphasis on also sensing tension but also sensing when you've regained relaxation. Again, there are all manner of videos on that on YouTube (he also has a book called "somatics" where they show the stretches / exercises). Good Luck.

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