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.

rstollery | @rstollery | Nov 19, 2019
In reply to @jefjr "New member and first response here. I have had this condition (pudendal nerve entrapment) since 2012,..." + (show)
@jefjr

New member and first response here. I have had this condition (pudendal nerve entrapment) since 2012, and I have seen a number of specialists who have conducted all of the studies you mention and performed all of the procedures you mention. The end result, I'm sorry to say, is that the pain persists in much the same way as it does for your wife. I am male, and most of the specialists I have seen deal with this issue in female patients, which makes diagnoses and treatment even more difficult. For pain, I have been prescribed Diclofenac 75mg twice daily since my first (non-related) cervical spine surgery in 2009. The medication does not affect the pain in the pudendal region, and at this point my new primary care physician at Mayo is concerned about long term use in general.

I can certainly empathize with folks who have said that this condition is a 'lonely' problem, both because it is more rare in the general population and there apparently is not much data for physicians to access. It is also very difficult to have a conversation about the issue with anyone other than a physician or a family member, so I typically 'suffer in silence' most days, and feel grateful on the rare occasion when the pain is negligible for a day or so.

Jump to this post

While I am new to this forum, I have suffered with PNE since 1981. It has never formally been diagnosed by a physician, but I believe it happened after I fell off a ladder. I initially tried acupuncture, hypnosis and went to a chronic pain specialist who was unable to help. My pain in constant in the rectal area. I describe it as someone twisting a 2/4 in my anus (sorry for being so descriptive). I have been taking hydrocodone pills for more than 10 years now, which help me sleep. As I am 82, I pretty much figure I will suffer from this for the rest of my life. The "suffering in silence" comment above also applies to me. I might add that I also have tried hemp oil drops unsuccessfully for the past year or so and am looking into trying CBD ointment as well. Does anyone have satisfactory results from using CBD?

REPLY
5 replies
Mentor
Jennifer, Volunteer Mentor | @jenniferhunter | Nov 19, 2019
In reply to @rstollery "While I am new to this forum, I have suffered with PNE since 1981. It has..." + (show)
@rstollery

While I am new to this forum, I have suffered with PNE since 1981. It has never formally been diagnosed by a physician, but I believe it happened after I fell off a ladder. I initially tried acupuncture, hypnosis and went to a chronic pain specialist who was unable to help. My pain in constant in the rectal area. I describe it as someone twisting a 2/4 in my anus (sorry for being so descriptive). I have been taking hydrocodone pills for more than 10 years now, which help me sleep. As I am 82, I pretty much figure I will suffer from this for the rest of my life. The "suffering in silence" comment above also applies to me. I might add that I also have tried hemp oil drops unsuccessfully for the past year or so and am looking into trying CBD ointment as well. Does anyone have satisfactory results from using CBD?

Jump to this post

@rstollery I had recently shared this comment, and I'm resharing for you. I've spoken with my physical therapist about pundental nerve entrapment, and she said it is treatable with MFR and that insurance companies usually don't want to pay for physical therapy for this.

I wanted to share our Connect discussion about myofascial release. I do not have experience with pundental nerve issues, but I have done a lot of MFR myself, and it helps conditions of nerve entrapment by releasing the tight fascia that is binding everything together. Pundenetal nerve entrapment is on the list of conditions that MFR can help according to the founder of these therapy techniques, John Barnes. There is a provider search on the MFR website. https://myofascialrelease.com/find-a-therapist/

Here is our discussion.
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

REPLY
LeighO57 | @leigho55 | Nov 19, 2019
In reply to @rstollery "While I am new to this forum, I have suffered with PNE since 1981. It has..." + (show)
@rstollery

While I am new to this forum, I have suffered with PNE since 1981. It has never formally been diagnosed by a physician, but I believe it happened after I fell off a ladder. I initially tried acupuncture, hypnosis and went to a chronic pain specialist who was unable to help. My pain in constant in the rectal area. I describe it as someone twisting a 2/4 in my anus (sorry for being so descriptive). I have been taking hydrocodone pills for more than 10 years now, which help me sleep. As I am 82, I pretty much figure I will suffer from this for the rest of my life. The "suffering in silence" comment above also applies to me. I might add that I also have tried hemp oil drops unsuccessfully for the past year or so and am looking into trying CBD ointment as well. Does anyone have satisfactory results from using CBD?

Jump to this post

I would love to know also if anyone has ever tried the CBD ointment. Great idea! I was diagnosed a year ago with pudendal neuralgia after three years of tremendous pain and yes it is still here but medications are keeping me going even though the pain is constant. I had to fight tooth and nail and switch to multiple different doctor's to find my answer. I tried the oil drops and it was a waste for me also. I suppose the ointment maybe also but I would love to hear how it may work for someone else with PNE. I agree, I think we will be suffering for the rest of are lives unfortunately. I am not a fan having nerves burned and have heard horror stories about it and have also heard success stories. Look forward to seeing what you find out with the ointment. Good luck!

REPLY
teg | @teg | Nov 19, 2019

Hello,
Sorry that you struggle with a very seemingly rare and debilitating situation, I understand completely. I have tried both CBD and THC creams external and internal applications with no relief. However, folks with other issues to include muscle tension and other pain have had success. I was able to secure a trusted source due to the delicate place of my pain to ensure it was safe. Had not reactions but no help. Best to you!

REPLY
1 reply
rstollery | @rstollery | Nov 19, 2019
In reply to @teg "Hello, Sorry that you struggle with a very seemingly rare and debilitating situation, I understand completely...." + (show)
@teg

Hello,
Sorry that you struggle with a very seemingly rare and debilitating situation, I understand completely. I have tried both CBD and THC creams external and internal applications with no relief. However, folks with other issues to include muscle tension and other pain have had success. I was able to secure a trusted source due to the delicate place of my pain to ensure it was safe. Had not reactions but no help. Best to you!

Jump to this post

Thanks for the info.

REPLY
vklittle61 | @vklittle61 | Nov 19, 2019
In reply to @rstollery "While I am new to this forum, I have suffered with PNE since 1981. It has..." + (show)
@rstollery

While I am new to this forum, I have suffered with PNE since 1981. It has never formally been diagnosed by a physician, but I believe it happened after I fell off a ladder. I initially tried acupuncture, hypnosis and went to a chronic pain specialist who was unable to help. My pain in constant in the rectal area. I describe it as someone twisting a 2/4 in my anus (sorry for being so descriptive). I have been taking hydrocodone pills for more than 10 years now, which help me sleep. As I am 82, I pretty much figure I will suffer from this for the rest of my life. The "suffering in silence" comment above also applies to me. I might add that I also have tried hemp oil drops unsuccessfully for the past year or so and am looking into trying CBD ointment as well. Does anyone have satisfactory results from using CBD?

Jump to this post

I am so sorry! I have this and I am in pain while typing this! Praying for
you

REPLY
rstollery | @rstollery | Nov 19, 2019

Thank you. I have prayed each and every day for more than 30 years for our Lord to ease or rid me of this pain.

REPLY
1 reply
vklittle61 | @vklittle61 | Nov 19, 2019
In reply to @rstollery "Thank you. I have prayed each and every day for more than 30 years for our..." + (show)
@rstollery

Thank you. I have prayed each and every day for more than 30 years for our Lord to ease or rid me of this pain.

Jump to this post

Wow! Did u ever do any pelvic floor physical therapy? That’s my next step. God bless you sweetheart this is some awful stuff!

REPLY
rstollery | @rstollery | Nov 19, 2019

I don't do pelvic floor physical therapy due to my arthritis. However, I do 15-20 minutes of exercises 6 days a week in the city hot tub, and that provides me a little (very little) relief for a short time.

REPLY
1 reply
vklittle61 | @vklittle61 | Nov 19, 2019
In reply to @rstollery "I don't do pelvic floor physical therapy due to my arthritis. However, I do 15-20 minutes..." + (show)
@rstollery

I don't do pelvic floor physical therapy due to my arthritis. However, I do 15-20 minutes of exercises 6 days a week in the city hot tub, and that provides me a little (very little) relief for a short time.

Jump to this post

I have read so many things of dues and don’ts and I went to my doctor today
and meant to ask him about the exercises that we can do but there is a lot
of stuff we just cannot do I will find out what the exercises are that we
can do and I will let you know. I will call my doctor tomorrow and ask him
I meant to do that today when I was there. But I feel like I was rushed in
and out! I’m glad I have someone to talk to about it.

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