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Tue, Jul 16 1:09pm · Pudendal Nerve Entrapment/Neuropathy/Damage in Chronic Pain

Have you seen a pelvic floor specialist? I had pudendal nerve pain after a surgery on my pelvis and for months sitting, laying, and standing were extremely painful. I saw a massage/ active release technique specialist every week who worked on all of the tight muscles outside my body. I am now seeing a pelvic floor specialist who is working on the internal pressure/trigger points that need to be released . I suggest both of these as they are helping me. God Bless!

Fri, Mar 8 8:42am · Pudendal Nerve Entrapment/Neuropathy/Damage in Chronic Pain

I have not posted in a while. I had pelvic vein embolization on 11/30/18.
the next day I started having tingles down my leg, pain, pain in my buttocks and burning pain in my crotch area. For 5 weeks the surgeon kept telling me it was normal, and likely due to the compression shorts I had to wear 24/7 for 30 days. My pain was constant and approximately a level 7. Finally after 5 weeks I was able to get the surgeon to see me again, when I mentioned I thought I had a problem with my pudendal nerve ( which I discovered via internet). The surgeon then agreed that I probably should have come out of the compression shorts sooner, but nerves recover. He was no help. I have also seen a neurologist who thought based on the examination, the notes from my surgery and my feedback, that I had sciatic and pudendal neuralgia. Because my pain intensity decreased from a 7 to a 4-5 after I stopped wearing the compression shorts, he said he felt the nerves might heal, but it will take 9-12 months. In the meantime he suggested physical therapy, restorative yoga, and active release therapy. He said I would have been better off on a padded operating table as the procedure was 2.5 hours, and that it take only 20-30 minutes for a nerve to be damaged without blood flow/oxygen. His best guess was that the way I was positioned cut off the circulation to my left leg, causing the problem, which was then exasperated by the compression for 30 days.

So, I am spending lots of money right now, seeing a physical therapist weekly, paying for yoga and seeing the active release therapist as well. I will say that some days/weeks the pain is down to a 2-3. Some days/weeks it is back to a 5. I cant find a reason for the change, as many of you have also expressed. I believe that lack of understanding/control of our pain is the worst part of the journey. I would encourage others out there to also try the active release. There are probably other parts of the body that are tight/out of whack because of the compensation we must do to try and sit without tremendous pain and discomfort. The neurologist felt confident that my gait was probably different, which can then lead to knee or back issues.

I dont have the answers. Sometimes looking on this site makes me more depressed – sometimes I find it helpful. I have also turned to daily meditation (something I never did) and I am even seeing a Healing Touch practitioner I found through a local hospital. Both of those have helped. I am a person who tends to "carry on" no matter what, and both of these practices have brought tears from me that I didnt know I was holding in. I am sure many of us are in that same situation. I would recommend that anyone try both of these as well. I figured that any type of assistance was something to try and be hopeful about.
I hope all reading this find some relief today!

Sun, Jan 20 8:00am · Pudendal Nerve Entrapment/Neuropathy/Damage in Chronic Pain

Thanks for the advice. This is a grim reality isn’t it? I can’t imagine doing this for 8 years- it is so painful and all encompassing! Kudos to you for helping your wife so. I have spoken with my physical therapist. She has suggested reaching out to a pelvic floor physical therapist. Have you gone down that route? If not perhaps that can bring her relief. Please keep me posted and I will do the same. I will keep you both in my prayers.
L

Sat, Jan 19 4:56pm · Pudendal Nerve Entrapment/Neuropathy/Damage in Chronic Pain

II had pelvic vein embolization on November 30,2018 as my pelvic veins were causing leg vein issues, swelling 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 against my outsides, which were being compressed by the compression shorts.
Ifinally 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. I am not comfortable that the surgeon knows anything about this condition.

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

Sat, Jan 19 4:53pm · Pudendal Nerve Entrapment/Neuropathy/Damage in Chronic Pain

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