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.

Cheryl | @cheryl1468 | Nov 27, 2019

In reply to @dmburns54 "Hi @lorid, I injured my Pudendal Nerve in 1995 and had surgery in 2001 at the..." + (show)

I heard Stanley antolak at Mayo did the surgery but he is mostly retired now I think. I tried mayo and they do pudendal nerve blocks through their pain clinic. The pudendal block did nothing so now I’ve been searching the country for the best people who really know how to treat PNE. Could we make a list together on this site?

rstollery | @rstollery | Nov 28, 2019

I have the same problem with the patch. It won't work in the area where my pain is...

trishj46 | @trishj46 | Dec 3, 2019

In reply to @cheryl1468 "Same question — I put lidocaine cream but that does nothing. Pain patch wouldn’t stay on..." + (show)

This is my first post on this site, I just joined. I have pudental neuralgia now for eight years. The two post above pretty much say everytghing for me too. I am in excrucisting pain now that seems to be permenrnt, no let up. I have been & tryed everything. I got PN from a surgery for a spinal cord injury. Just recently broke my hip and the fx and
and surgery caused more spinal damage. Pretty much home bound now. I am at a point of giving up. I trust God but pray daily that He will take me home! My worst pain is rectal and vaginal where the nerves are and can take no more. Excuse spelling---blind in one eye, Have neurogenic bowel & bladder from spinal injury. I have no life.

vklittle61 | @vklittle61 | Dec 3, 2019

I have it too and it is the worst ! I’ve tried injections , nerve blocks, radio frequency ablation all with no help! I recently had to quit my job because of this ! I am in Houston tx

trishj46 | @trishj46 | Dec 4, 2019

Can you tell me if you are in constant rectal burning pain----feels like butcher knife sticking in me--up all night it is worse----have been to rectal-colon and they keep saying nothing is there---I could scream!!! 3am now in agony!!
I live in Phila. Pa-----Cannot lay on back---or stand or walk too much. Ice on butt. Sorry for your pain!

rstollery | @rstollery | Dec 4, 2019

In reply to @trishj46 "Can you tell me if you are in constant rectal burning pain----feels like butcher knife sticking..." + (show)

Yes, this is exactly what I've been going through for nearly 40 years....and no end in sight!!!

resawaller | @resawaller | Dec 4, 2019

I'm in pain everyday from serve nerve damage to the point it's driving me crazy. Doctors can't seem to figure out whats wrong with me ! Really! I'll pray for you everyday! And know your not alone

trishj46 | @trishj46 | Dec 4, 2019

In reply to @resawaller "I'm in pain everyday from serve nerve damage to the point it's driving me crazy. Doctors..." + (show)

Where do we find profile??

resawaller | @resawaller | Dec 4, 2019

In reply to @lioness "I also have nerve entrapment from lower back to growth n and use ice bags that..." + (show)

Yes, nerve pain is HE'LL! And no one seems to understand,and it's hard to explain. The burning stabbing,needle sticks,and numbness is so bad! And taking care of family is a chanellege everyday! I will pray for you as I know your pain!! God bless all you pain worries!

Ginger, Volunteer Mentor | @gingerw | Dec 4, 2019

In reply to @trishj46 "Where do we find profile??" + (show)

@trishj46 If you click on the blue hyperlink under the avatar symbol on the left, you can go to a person's profile. If it is your own, you can edit it if desired.
Ginger