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.

Interested in more discussions like this? Go to the Chronic Pain Support Group.

Sorry you're feeling such pain and isolation finding help. Not a combo anyone wants to be in. I've been in groin pain 6yrs with symptoms that none of many tests, procedures & injections have relieved or explained. Difficulties sitting, walking, standing & few periods of relief per day. Not sure what to try next & also in Canada. There's not much help for pain. Nor many suggestions re next steps. Inner right buttock pain feels like a narrow 6 in band that gets so tight it seems like it might snap.
About half an inside upper pube area constant circular maybe nerve related pulsing. Have a sense of a balloon like fullness that can feel light or heavy, larger or smaller. Ugh. Not sure what to try next. Any of this similar to your symptoms? Wishing us both relief & understanding of wtf is going on. Hang in there. You're definitely not alone & great peeps here. Tah 4 now.

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Profile picture for ellesea01 @ellesea01

Sorry you're feeling such pain and isolation finding help. Not a combo anyone wants to be in. I've been in groin pain 6yrs with symptoms that none of many tests, procedures & injections have relieved or explained. Difficulties sitting, walking, standing & few periods of relief per day. Not sure what to try next & also in Canada. There's not much help for pain. Nor many suggestions re next steps. Inner right buttock pain feels like a narrow 6 in band that gets so tight it seems like it might snap.
About half an inside upper pube area constant circular maybe nerve related pulsing. Have a sense of a balloon like fullness that can feel light or heavy, larger or smaller. Ugh. Not sure what to try next. Any of this similar to your symptoms? Wishing us both relief & understanding of wtf is going on. Hang in there. You're definitely not alone & great peeps here. Tah 4 now.

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Dear Moderators,
Good lordy just sent this to myself. Yikes.
Will try again.

@ellesea01

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Moderators,

Not finding the @
Recipient.
???

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Profile picture for mikayla @mikaylar

I will tell you what to do. I had this monster for 14 years before I was cured in 2 weeks. I was given the anti-seizure drug, Topamax off-label for a daily persistent migraine. It relieved the pain in my butt in 2 weeks, but did nothing for my headache. My pelvic therapist told me a year later that she had heard of this. It is worth a try. Topamax had nasty side effects but you won't need to take it long. Worth a shot, right?

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@mikaylar I took Topamax for a few months and I had such horrible fatigue and zero appetite that I had to stop it. And it didn’t help my PN 🙁

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Profile picture for dcdusek @dcdusek

@mikaylar I took Topamax for a few months and I had such horrible fatigue and zero appetite that I had to stop it. And it didn’t help my PN 🙁

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@dcdusek
Sorry New to this thread, I Think??
Anyway I have Late Stage Lyme, have been dealing with it for 8 years! Gone through various stages and the Hurt that go with them. One symptom is Neuropathy! It has gotten very bad, my podiatrist calls where it is now, my lower body and particular my legs in trying to walk! He calls it Polyneuropathy. I struggle walking with my balance being totally gone!
He did up the prescription of Pregabalin to 100mg. Helps a little, but not relay!
Can anyone give me any insight of what has helped for you1
Thanks,
Sundance, aka - RB

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