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.

@linedancer18337

Hi, my name is Linda, I have never heard of nerve entrapment. I am suffering and need help bad. My nervous system has been damaged very badly from Lymes disease. I now have neuropathy, I am awake most of the night. Yesterday ,I kept dropping things and my hands and arms are really bad.i am not functioning well at all, getting worse each day. Doctors around here have little knowledge of this. I have this from my head to my toes and cannot stand this pain . I feel as though I have stuck my finger in a socket and have a steady severe buzz. Does this sound like what you have?
Seeking help please! Thanks.

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Find a Massage Therapist certified in Neuromuscular work. Entrapped nerves are part of the training for this modality.

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@mcwoodham761

Find a Massage Therapist certified in Neuromuscular work. Entrapped nerves are part of the training for this modality.

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Thank you. I have tried that but may revisit.

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@linedancer18337

Hi, my name is Linda, I have never heard of nerve entrapment. I am suffering and need help bad. My nervous system has been damaged very badly from Lymes disease. I now have neuropathy, I am awake most of the night. Yesterday ,I kept dropping things and my hands and arms are really bad.i am not functioning well at all, getting worse each day. Doctors around here have little knowledge of this. I have this from my head to my toes and cannot stand this pain . I feel as though I have stuck my finger in a socket and have a steady severe buzz. Does this sound like what you have?
Seeking help please! Thanks.

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Please try several accupuncture sessions
Give it 20

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

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@richman54660

@bkruppa There is not a lot of scientific studies in the US. These enzymes have been used for many years in Japan and elsewhere. There are some reviews of the enzymes on websites such as WebMD and Healthline. I did come across an article from a medical journal recommending nattokinase as an anti-thorombolytic – but I'm having a hard time finding it. Here is a review about Serrapeptidase, attached.

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I’ve also been using them for bladder, pudendal nerve, hip and lower back pain.

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@bkruppa

Thanks for the last two posts. Let me take you back to how this all started and why I am looking into the areas that I am. My wife developed a bad case of shingles that affected the pudendal nerve. Her left buttocks and pelvic are had very intense pain that lasted for about four months. During this time she was pretty much bed ridden and favored laying/sitting on her right side. Once the shingles started to subside it appeared that in a few months the pain would be gone but unfortunately after about 3 months of the pain going down it stopped and I believe that something else kicked in. Myofacial issues due to being bed ridden for so long? Nerve entrapment given that all the areas supported by the pudendal nerve were still in pain? Sacrotuberous issues due to muscle inflammation? Spinal issues (at the root of the pudendal nerve) due to her favoring one side for so long? So there are many areas that I suspect could be the root of the problem.

Inflammatory meds like Advil help a lot so this would say the source maybe is inflammation or a strained muscle as Advil helps these conditions. My thoughts regarding an inversion table is that if the spine is cocked due to the favoring position then this would help get it back to normal. I've read much about blood pressure being a concern but question this as one's blood pressure goes up quite high when doing normal exercises and just about every doctor on earth recommends exercises and many set goals of working in your heart target ranges which is quite stressful (I don't believe in this approach). We both are senior citizens so we are at the age where muscle just don't move, stretch, reform, etc. like they did many years ago.:):) So she doesn't see instant results using any technique but she does get relief when being massaged in the painful areas. She has been to a PT who specialized in pelvic pain and while the treatments helped (mainly massaging) it wasn't lasting.

So three things seem prominent: First is that inflammation seems to be part of the problem. Second is that sitting causes the pain to get significantly worse. Third massaging helps but so far hasn't been a solution. Fourth, one neuro doctor has suggested that the source may be at the roots of the nerve which is at the spinal column. He indicated that an inversion table may help since favoring her one side may have caused one side of a disk to be compressed and therefore causing pain. Finally is the question of why some mornings her pain level is way down at a two or three level???? Other mornings it is not. That's what I'm working with. I'm thinking to take her to a normal PT clinic to work on straightening out her entire muscle system in that area. The PT specialist only worked on massaging the pelvic area.

As for your concern regarding full inversion my wife would never go to that extreme. Thirty degrees or around that angle would be the most and yes this would be after warming up the muscles. In fact she warms up her muscles before doing any stretching techniques.

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An osteopathic doctor will be able to help your wife get her body form straight. That’s their area of expertise. They are sort of like PT and sort of like a chiropractor in one. I saw one for my pudendual nerve because I was favoring the side that didn’t hurt causing other problems.

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@mnmboys13

I developed pudendal and obturator nerve entrapment on one side of the vagina immediately after my hysterectomy. It too a few years and doctors to finally find an ob/gyn specialist who operates to relieve the entrapment: Dr.Mark Conway, Merrimac, New Hampshire. He is one of only several doctors in the USA who specializes in this area. I had two surgeries over two years and have gone from an "8" level pain to a "3" in just one tiny area. I apply lidocaine cream every night to this small area to make it less sensitive. This doctor was my gift!! I still see him every year.

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Does anyone at Mayo Clinic Rochester specialize in obturator neuropathy? Or have the expertise to diagnose hip neuropathy due to nerves of the sacral plexus or muscle spasm affecting such nerves? Any help would be great. Have been using the pain clinic and they are nice and try to be helpful but I don’t get the impression they are the right team to address this at mayo as much as I like them.

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@cheryl1468

Does anyone at Mayo Clinic Rochester specialize in obturator neuropathy? Or have the expertise to diagnose hip neuropathy due to nerves of the sacral plexus or muscle spasm affecting such nerves? Any help would be great. Have been using the pain clinic and they are nice and try to be helpful but I don’t get the impression they are the right team to address this at mayo as much as I like them.

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@cheryl1468 A suggestion I could make would be to see a physical therapist for an evaluation who also does myofascial release work. You may or may not need a doctor's script for that depending on your state's rules. MFR can help these types of problems. Here are a couple links that explain the issues with entrapment of the lumbar plexus and our discussion on MFR where you can find lots of links and a video of John Barnes (the guy who developed his methods for stretching fascia) who is treating a patient. You can find a provider search on the MFR website.
https://trainingandrehabilitation.com/identify-treat-lumbar-plexus-compression-syndrome-lpcs/
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/
https://myofascialrelease.com/find-a-therapist/

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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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It happened me after surgery too pudendal neuropathy
Its very tough 7 years later

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@cheryl1468

Does anyone at Mayo Clinic Rochester specialize in obturator neuropathy? Or have the expertise to diagnose hip neuropathy due to nerves of the sacral plexus or muscle spasm affecting such nerves? Any help would be great. Have been using the pain clinic and they are nice and try to be helpful but I don’t get the impression they are the right team to address this at mayo as much as I like them.

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I have pudendal neuropathy and find accupuncture helps with the pain buts it needs lots of sessions so expensive

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@oregonbrad

Hello my name is brad, new member as of today. I had a motorcycle accident in 2003 and damaged my pudendal nerve. I haven’t been able to sit at all since. I either stand or lay down which is taking its role on my body after 15 years of doing it. People don’t realize how important it is to b able to sit. The pain is constant and very severe at times. I have tried a stimulator and morphine pump both to control the pain but unfortunately the cathider and leads of the stimulated stayed constantly inflamed cuz I have to lay on my back so much. I had the stimulator and pump from 2004-2006. I have been taking morphine sulphate for 15 years now, adding lyrica and nortriptiline along the way. I tried many other meds also, but these were the ones that helped the most and were easier on my body than some of the alternatives. I’m tired of living this housebound life and am currently looking into surgery which I have avoided for all these years cuz if things go wrong it could leave me with no bowl control. My pain management dr. Is in the process of looking for the best dr. For me to c to talk to about impingement surgery, I have no idea what is going to happen or were I’m gonna have to go but I’m willing to travel anywhere for one last go at this. I feel deeply for the people having to go through this, be strong and take it day by day . I hope we can help one another by providing information here, I will definitely update my circumstances as they develop . I’d like to hear from some more people that have had the decompression/ impingement surgery please share good or bad

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Dear Brad, I know your post is quite old so you may have already gone down the surgery path. I have severe pudendal nerve entrapment and have for almost 20 years. I am about to turn 58. I, along with my neurologist did the home work to find me a surgeon. I ended up having bilateral pudendal nerve entrapment surgery. I had to travel from KY to Minnesota to get it done. I had to make three or four trips there prior to the surgery. Keep in mind that the pudendal nerve is quite long and wraps around other parts of your body. Looking back I don't know how a determination was made as to where to actually go in on both sides. I spent a week there and had a five hour surgery. It was a total failure. All that hope I had was gone and I still had to recover from a major surgery. I'd be interested to know if you had surgery and if it worked. I do have an implanted Medtronic pump system and have for about ten years. It has a compound of morphine and marcaine and is just delivering a small dose into my spine that helps block the pain signals being sent to my brain. It hasn't fixed my pain but it has done enough to keep me from jumping off of a bridge. Over time, I have learned that stress is a big flare inducer and I have worked hard to train my brain to push the pain to the back of my mind. For many years it was all I could think about. I hope you have made some progress since you posted. Believe me when I tell you I feel your pain and sympathize. Joan

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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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So so happy for you. I'm year 2 after 6 years reprieve with no relief or answers after multiple specialists and procedures to include botox and blocks…
Not even sure if I have pn.
Pain all the time after lifting my leg in bed that started this. 12 years ago suffered for 4.5 with a simple twist. 14 specialist 3 exploratory surgeries and gave up and over time just weirdly went away.
At current, Worse after bm.
Super debilitating and embarrassed.
No pain meds seem to touch it.
Pain unbearable…had my babe with no meds…this is worse.

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I agree! I has 2 kids with no pain meds and this horrible! I'd have 20 kids if this nerve pain would go away! I'll pray for you all ,and please do the same for me cause prayer works! Amen

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@resawaller Have you tried serrapeptidase and nattokinase enzymes? These may be able to aid in scar tissue remodeling and possibly reduce nerve compression (along with stretching and exercise). I believe I posted about these in this thread and possibly in the pain in the butt thread here under chronic pain topic. These helped me a lot, I think.

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Thanks for your feedback. I have never tried the above mentioned. Is this script or OTC? I really hope you are feeling some improvements and life quality.

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