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Pudendal Nerve Entrapment/Neuropathy/Damage

Chronic Pain | Last Active: Jun 4 12:10pm | Replies (650)

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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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Replies to "I am curious to know if you have any further successes? I had pelvic vein embolization..."

We currently are looking into and having treatments called MFR or MyoFacialRelease. This is the area between the outer skin and muscles or between two muscles. Normal action of this area is to allow one part of the body to slide over the other like one muscle over the other muscle. The theory is that if one is inactive for a long period of time (like my wife was with the shingles episode and bed ridden for about 3 months) this layer can become hardened and not work as it normally would. It can also entrap nerves that pass through this area which can cause pain. Treatment for MFR is specialized massaging techniques that help restore this area to it's original fluid from a harden state. We have also tried some new dual beam laser treatments that offer temporary relief but nothing permanent.

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

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.

The same thing happened to me in 1998. Pelvic surgery lead to Pudendal nerve damage. I developed a neuroma and my doctor in his infinite wisdom said the pain was in my head even though I lost 30 lbs and could barely stand or sit. I had a young family to look after back then too. It was brutal. I decided to leave this amateur and seek help with doctor's at an Ivy League hospital. They did pain mapping laproscopiclly and did a series of lidocaine injections. There was 40-50%
improvement and in some areas,the pain never returned! I was still in too much pain so the pain center docs tried me on seizure meds ( which made me feel spaced out everyday. )After trying other things they finally said, no more fooling around and I was put on a duragesic pain patch. That was when I got my life back! I tolerated the meds well for years! I recently moved south where the doctors are paranoid about meds. So even though I was doing well for 20 years, they've reduced my meds causing me pain symptoms again because of the hype. It doesn't matter that I've been a good and successful patient for so many years. So I reluctantly agreed to a nerve block which didn't work. I've found out one important thing in my research. Go to a doctor who's an Anesthesiologist. The MDs and DOs who are NOT anesthesiologists have less understanding and training of the nervous system and do not spend only 6 months or so learning to do injections (which in my experience has been hit or miss.) My pain doc up north who was also a trained Anesthesiologist was definitely a better pain management doc....(I miss him). Many pain patients are suffering because they're under prescribed when there's actually a small percentage that abuse their scripts or end up in trouble. Its too bad that the ignorance out there is general, because most of us want to be pain free and live life. We're not interested in getting high or abuse our meds. I recently heard that there are MRIs offered to scan nerves to pinpoint those that are damaged. If you opt for some Physical Therapy, find a pelvic floor DPT who understands nerve issues with a lot of experience. It's a battle trying to find the true expert providers out there but don't give up, advocate, research,and question everything!!! Knowledge is power ( as long as its found in the right place ( like Mayo) Hope this helps.