1. < Chronic Pain

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 | Mar 11 10:00pm
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

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

REPLY
FloridaSwimmer | @vickyvanvliet | Mar 11 10:01pm
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.

Jump to this post

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

REPLY
mikaylar | @mikaylar | Mar 12 9:25am
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.

REPLY
salliegrsanford | @salliegrsanford | Mar 13 12:31am

I also suffer from pudendal nerve entrapment ! It has taken years of increasing pain to at last be diagnosed. Now waiting for surgery ~ last chance at having a semi normal life . Terrified . I am afraid all of this has taken a tremendous toll and recovery will be a long , long and painful one. If I truly can recover. Disgusted with Dr.s and Surgeons that know nothing at all about this horrible condition ! It destroys years of your life .

REPLY
1 reply
tammiek | @tammiek | Mar 19 9:51am
In reply to @cake "I don't have the vagina, urethra pain. Just sit bone pain, butt crack pain, and bottom..." + (show)
@cake

I don't have the vagina, urethra pain. Just sit bone pain, butt crack pain, and bottom of sacrum and buttocks pain. Not sure what I have.

Jump to this post

Wow, that’s how my pudendal neuralgia started. Burning, stabbing pain in my rectum/tailbone pain. That was in 2013. I suffered with this condition Until 2018 when I heard of the pain clinic in Mankato, MN. Had nerve blocks that didn’t do anything, then put on Duloxetine. That helped along with sitting on a Kabooti cushion. Those were a life saver back then. Pain eventually got worse and I my doctor recommended a Nevro spine stimulator. Worked wonders at that time. But in 2024 the pain began migrating to my vagina (felt like a bad yeast infection at first). My skin started getting pins and needles stinging from the back of my buttocks (even tailbone pain) to my labia skin. then the pain started inside my vagina. After reading about Pudendal neuralgia I confirmed my own symptoms and those of PN were exactly the same. I had adjustments made on my stimulator to target the pudendal nerve and it has really helped. I usually have no pain right when I get up, but it slowly progresses throughout the day depending on how much bending/lifting and housework I do. I can’t work anymore (since 2013 I can’t sit for more than a couple hours with special cushion to sit on). My pain gets bad by 3 pm, so I use my stimulator on pulsation phase and I feel it. It confuses my the nerve /brain because all you feel when s the pulse not the pain. It is a life saver for me. I lay down to rest as well. That helps. I have had chronic constipation since I was 17 yrs old and that is one of the symptoms that can lead to pudendal neuralgia. I live day by day with this. Hope this helps.

REPLY
tammiek | @tammiek | Mar 19 10:00am
In reply to @salliegrsanford "I also suffer from pudendal nerve entrapment ! It has taken years of increasing pain to..." + (show)
@salliegrsanford

I also suffer from pudendal nerve entrapment ! It has taken years of increasing pain to at last be diagnosed. Now waiting for surgery ~ last chance at having a semi normal life . Terrified . I am afraid all of this has taken a tremendous toll and recovery will be a long , long and painful one. If I truly can recover. Disgusted with Dr.s and Surgeons that know nothing at all about this horrible condition ! It destroys years of your life .

Jump to this post

Please let me know how your surgery goes. I’ve been suffering since 2013. Only gets worse as time has gone on for me. Praying for successful surgery for you.

REPLY
View MoreView Less
Please sign in or register to post a reply.