Pudendal Nerve Entrapment/Neuropathy/Damage

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.

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.

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.

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

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.

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

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.