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Pudendal Nerve Entrapment/Neuropathy/Damage
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.
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I have peripheral neuropathy that is considerably worsened by sitting. There seems to be compression of the sciatic nerve by the piriformis muscle. Hopefully, it can be fixed by physical therapy. Has anyone experienced this? Amitriptyline has worked the best for controlling the nerve pain.
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1 ReactionPT and a good program of home stretching works on my sciatic pain. My friend did not have coverage for PT, so I showed her my routine, and it helps her as well. The other thing that helps is laying on ice placed at the site where the piriformis and sciatic nerve converge.
Finally, sitting is a horrible culprit for me as well. I can ease it by moving - I even do some normal seated activities while standing up (typing, running my sewing machine) or lying down (reading.)
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1 ReactionI am so sorry about your diagnosis and scar tissue
I was diagnosed with scar tissue in the spinal cord, the lowest part, the causa equina. It’s been 18 years. The Mayo Clinic doctors called that scar tissue arachnoiditis. It causes among other symptoms, serere pain in the pelvic floor. ( Mayo Clinic calls it pelvic floor tension mialgia )
I wrote about this on this site several times. As far as I know, any invasive procedure on the spinal cord scar tissue can cause more scar tissue.
Before jumping to surgery would you be able to get a second opinion ?
Maybe ay the Mayo Clinic itself?
I had epidurals, taken those meds, with no relief
Last wee I had Botox injections to relax the pelvic floor but so far, again, no relief
I ended up using a wheelchair and seating on memory foam pillows that I take everywhere I go
Good luck! I do hope you get relief sometime soon ! 💓
@dcdusek you will notice that I have moved your post and the responses to it into an existing discussion on pudendal nerve entrapment so you may benefit from past conversation as well as to have a central discussion for you and others on this topic.
You've heard from several members already! What are your main questions/concerns going into your surgery in a few weeks?
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2 ReactionsI would love to hear from others who have had a successful surgery and how long it took to heal.
Where do I find my original post?
Here is a direct link to it in this discussion: https://connect.mayoclinic.org/comment/642177/
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1 ReactionI would too. I was trying to share the difference between pain relief for sciatic pain which is not to hard to achieve and the pain from scar tissue. The latter i believ tends to be more difficult to treat.
Please continue posting the latest about this issue!.
And thanks a million!
I've told others on here that the only thing that worked for me after 14-1/2 years of sitting on a donut was Topamax, an anti-seizure medicine that I took off-label for another medical problem. It worked quickly too - within 2 weeks. Ask your doctor.
I read your post and my doctor wrote the prescription but it has made me feel sick and had major loss of appetite and very tired. Did it do that to you as well?