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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.

FloridaSwimmer | @vickyvanvliet | 17 hours ago
In reply to @ocie "My son had pudental nerve entrapment! He was a huge mountain bike cyclist! The pain was..." + (show)
@ocie

My son had pudental nerve entrapment! He was a huge mountain bike cyclist! The pain was terrible! It was brought on by exaggerated stress! We live in Alabama, but he went to a physical therapist in Boulder, Colorado. He had to have some type of manipulation which required going through the anus! His PT in Colorado faced time with his PT here in Alabama! It took close to 2 years to completely recover! He was still afraid of getting on his bike! His PT told him he was well and needed to get back on the bike! His first ride was an extremely difficult ride, but he was so focused on the ride, that he didn’t even think about pain! This was about 5 years ago and he has never experienced this problem again since leaving PT!
He also read a book called the
, The Mindbody Prescription , healing the body, healing the pain by John E Sarno, MD. You should try to find a Dr that understands PD! Most urologist don’t even know anything about this real problem! It’s just in your head. This is what he heard from several dr’s! Do not have surgery! Many times it just makes the problem worse! Good luck and I hope you find a PD DR that can help you!

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Do you know the name of the PT in Colorado? Would love to contact

REPLY
FloridaSwimmer | @vickyvanvliet | 17 hours ago
In reply to @scain "Just wondering if you have tried lyrica (pregabalin). My neurologist said it is the best drug..." + (show)
@scain

Just wondering if you have tried lyrica (pregabalin). My neurologist said it is the best drug for nerve pain. Yes all meds come with side effects (this one dizziness and overall slow reactions). But it does help with pain.. not so much RLS. But some people are on a cocktail of drugs. Are you being seen at a pain management clinic. At least there they seem to know what drugs work in what problem. That said forgive me if this comes off as preachy which is not meant. We all feel your pain and want you to st least have that at bay.

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yep made me feel too strange - but thank you for the ideas!

REPLY
mikaylar | @mikaylar | 6 hours ago
In reply to @ocie "My son had pudental nerve entrapment! He was a huge mountain bike cyclist! The pain was..." + (show)
@ocie

My son had pudental nerve entrapment! He was a huge mountain bike cyclist! The pain was terrible! It was brought on by exaggerated stress! We live in Alabama, but he went to a physical therapist in Boulder, Colorado. He had to have some type of manipulation which required going through the anus! His PT in Colorado faced time with his PT here in Alabama! It took close to 2 years to completely recover! He was still afraid of getting on his bike! His PT told him he was well and needed to get back on the bike! His first ride was an extremely difficult ride, but he was so focused on the ride, that he didn’t even think about pain! This was about 5 years ago and he has never experienced this problem again since leaving PT!
He also read a book called the
, The Mindbody Prescription , healing the body, healing the pain by John E Sarno, MD. You should try to find a Dr that understands PD! Most urologist don’t even know anything about this real problem! It’s just in your head. This is what he heard from several dr’s! Do not have surgery! Many times it just makes the problem worse! Good luck and I hope you find a PD DR that can help you!

Jump to this post

The only thing that worked for me after 14 years sitting on a donut was an anti-seizure drug, Topamax that I took off-label for constant headache. I took it for 2 weeks and the pain in my rectum was gone. Still had the headache. My pelvic therapist mentioned that she had heard of this before, never bothering to mention it to me!!! Worth mentioning to your doctor.

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