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 | Oct 14, 2024
In reply to @tcsnydes3 "My son is dealing with a damaged nerve from surgery 15 years ago. Has been through..." + (show)
@tcsnydes3

My son is dealing with a damaged nerve from surgery 15 years ago. Has been through all of the things and his last appointment at the Mayo did not leave him with a very positive outcome. He saw the best dr. that Mayo has. I will forward this info to him and see if he can convey it to his doctor. I pray it works as he is so frustrated. Thank you for this little bit of hope!

Jump to this post

It can be a miraculous treatment. I don’t know why they don’t do it. I only wonder if it’s because it’s so inexpensive? I’m in Florida and we have a doctor here in Sarasota. Good luck.

REPLY
1 reply
johnhenry56 | @johnhenry56 | Oct 29, 2024

Anyone had L5, S1 degenerative disc disease that pinched pudendal nerve. Doing Pelvic floor Therapy. Seems to be back. CT scan showed the DDD. Person I know had this pain just show up awful 4 months ago. Had DDD at same spot. Surgeon fixed Disc issue, pain went away.

REPLY
1 reply
rosac | @rosac | Dec 23, 2024
In reply to @vickyvanvliet "It can be a miraculous treatment. I don’t know why they don’t do it. I only..." + (show)
@vickyvanvliet

It can be a miraculous treatment. I don’t know why they don’t do it. I only wonder if it’s because it’s so inexpensive? I’m in Florida and we have a doctor here in Sarasota. Good luck.

Jump to this post

Hi Vicky,
I’m also in Florida still trying to find a Dr to help me
Is your Dr still in Sarasota?
Thanks !

REPLY
2 replies
FloridaSwimmer | @vickyvanvliet | Dec 23, 2024
In reply to @rosac "Hi Vicky, I’m also in Florida still trying to find a Dr to help me Is..." + (show)
@rosac

Hi Vicky,
I’m also in Florida still trying to find a Dr to help me
Is your Dr still in Sarasota?
Thanks !

Jump to this post

He is and he’s with one of the biggest orthopedics practices there are and I’ve known him for . He’s with pain management at Kennedy White orthopedics. His name is Dr. Satia one of the most brilliant doctors I’ve ever met and personable. If you have any questions, please feel free to call me or email me. My phone number is 941-355-5000. I know it’s a tough thing to find I had to find him and an associate through going all the way through Mayo clinic for my nerve problem

REPLY
FloridaSwimmer | @vickyvanvliet | Dec 23, 2024
In reply to @johnhenry56 "Anyone had L5, S1 degenerative disc disease that pinched pudendal nerve. Doing Pelvic floor Therapy. Seems..." + (show)
@johnhenry56

Anyone had L5, S1 degenerative disc disease that pinched pudendal nerve. Doing Pelvic floor Therapy. Seems to be back. CT scan showed the DDD. Person I know had this pain just show up awful 4 months ago. Had DDD at same spot. Surgeon fixed Disc issue, pain went away.

Jump to this post

I’ve been treated with radio frequency ablation for my potential nerve and that help with the pain immensely. I am currently using Dr.Satia at Kennedy White orthopedics in Sarasota, Florida. I found the doctor through getting help for pudendal neuralgia through Mayo Clinic.

REPLY
rosac | @rosac | Dec 23, 2024
In reply to @rosac "Hi Vicky, I’m also in Florida still trying to find a Dr to help me Is..." + (show)
@rosac

Hi Vicky,
I’m also in Florida still trying to find a Dr to help me
Is your Dr still in Sarasota?
Thanks !

Jump to this post

Thanks!
It’s 125 mile trip which as you probably already know is a long ride with PN but I’m looking at him online right now Thank you !

REPLY
1 reply
mikaylar | @mikaylar | Dec 24, 2024
In reply to @rosac "Thanks! It’s 125 mile trip which as you probably already know is a long ride with..." + (show)
@rosac

Thanks!
It’s 125 mile trip which as you probably already know is a long ride with PN but I’m looking at him online right now Thank you !

Jump to this post

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.

REPLY
3 replies
bunnybear | @bunnybear | Dec 24, 2024
In reply to @vickyvanvliet "I think that sounds all very extreme. Radio frequency ablation is not that long lasting and..." + (show)
@vickyvanvliet

I think that sounds all very extreme. Radio frequency ablation is not that long lasting and it simply stuns the nerve I found that’s plenty of pain relief and these other things are so invasive. It sounds horrible to me. I would never put an implant in my body there are so many things that can go wrong. The reason it’s perhaps not more popular is they don’t really make a lot of money out of it. It’s a $1500 procedure that is an outpatient where they just put you under a little bit and then you walk away in a couple of hours. I had great results with something that was safer and not so drastic. Still in the pain comes back. It’s nothing like the original pain. It’s like maybe an eighth of that. I found my doctor through making an appointment at Mayo. They could point me to someone that was trained in radio frequency ablation that was right in my town that practiced in pain management of nerves. They do warn you of complications that sound extreme. But my pain was so bad I couldn’t keep living living that way.

Jump to this post

@vickyvanvliet what are the complications they warn you of? I’ve learned to pay attention to those.

REPLY
1 reply
rosac | @rosac | Dec 24, 2024
In reply to @bunnybear "@vickyvanvliet what are the complications they warn you of? I’ve learned to pay attention to those." + (show)
@bunnybear

@vickyvanvliet what are the complications they warn you of? I’ve learned to pay attention to those.

Jump to this post

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 !!!

REPLY
2 replies
rosac | @rosac | Dec 24, 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

I will ask about Topamax. I’ve tried so many different things and so far, nothing works for me either! I recently quit amitriptyline because of the brain effects My head is still buzzing !! Thanks !!

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