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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.

mikaylar | @mikaylar | Dec 24, 2024
In reply to @rosac "I’m thinking about RFA but can’t get past the thought of burning the nerve that controls..." + (show)
@rosac

I’m thinking about RFA but can’t get past the thought of burning the nerve that controls the bowel and bladder !? I guess I’m not bad enough to take the risk yet. I have enough problems already !!!

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No, no no. Pick your poison!

REPLY
kenc | @kenc | Dec 25, 2024
In reply to @mikaylar "I sat on a donut for 14 years. Nothing worked for me until I took an..." + (show)
@mikaylar

I sat on a donut for 14 years. Nothing worked for me until I took an off-label anti-seizure drug for a daily persistent headache. In 2 weeks the pain in my butt was gone. My Pelvic PT therapist mentioned to me a year later that she had read about this. Ask your doctor. It's worth a try. I think it was Topamax.

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There are reported some tough side effects, for pregnant women and their fetus.

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1 reply
rosac | @rosac | Dec 25, 2024
In reply to @kenc "There are reported some tough side effects, for pregnant women and their fetus." + (show)
@kenc

There are reported some tough side effects, for pregnant women and their fetus.

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This is so so so extremely hard because I’m really sensitive and very bad with side effects Everything I have tried so far only causes more problems About at the end of my rope today

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2 replies
mikaylar | @mikaylar | Dec 25, 2024
In reply to @rosac "This is so so so extremely hard because I’m really sensitive and very bad with side..." + (show)
@rosac

This is so so so extremely hard because I’m really sensitive and very bad with side effects Everything I have tried so far only causes more problems About at the end of my rope today

Jump to this post

I understand. I had side effects from the Topamax and stopped but I only took it 2 weeks and the pain subsided.

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kenc | @kenc | Dec 25, 2024
In reply to @rosac "This is so so so extremely hard because I’m really sensitive and very bad with side..." + (show)
@rosac

This is so so so extremely hard because I’m really sensitive and very bad with side effects Everything I have tried so far only causes more problems About at the end of my rope today

Jump to this post

Am there and have the failed pain remedies to prove it.

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FloridaSwimmer | @vickyvanvliet | Dec 27, 2024
In reply to @rosac "I’m thinking about RFA but can’t get past the thought of burning the nerve that controls..." + (show)
@rosac

I’m thinking about RFA but can’t get past the thought of burning the nerve that controls the bowel and bladder !? I guess I’m not bad enough to take the risk yet. I have enough problems already !!!

Jump to this post

I totally understand and if your pain hasn’t gotten that bad, that’s wonderful 🙂

REPLY
FloridaSwimmer | @vickyvanvliet | Dec 27, 2024
In reply to @mikaylar "I sat on a donut for 14 years. Nothing worked for me until I took an..." + (show)
@mikaylar

I sat on a donut for 14 years. Nothing worked for me until I took an off-label anti-seizure drug for a daily persistent headache. In 2 weeks the pain in my butt was gone. My Pelvic PT therapist mentioned to me a year later that she had read about this. Ask your doctor. It's worth a try. I think it was Topamax.

Jump to this post

Thank you so much! Point I never heard of this drug and I will check it out immediately

REPLY
1 reply
mikaylar | @mikaylar | Dec 27, 2024
In reply to @vickyvanvliet "Thank you so much! Point I never heard of this drug and I will check it..." + (show)
@vickyvanvliet

Thank you so much! Point I never heard of this drug and I will check it out immediately

Jump to this post

It's used for seizures. Makes sense as the area is in a spasm. I was prescribed it off-label for headaches.

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