1. < Chronic Pain

Anyone out there diagnosed with Pudendal Neuralgia?

Posted by LeighO57 @leigho55, Jun 5, 2018

I have not been on connect for quite a while since I have only recently received a diagnosis (one of many probably to come) I am looking for someone/anyone who has the pain from a surgical injury of sorts to this nerve to talk to. Is there anyone out there with Pudendal Neuralgia on connect? Thank you!

Interested in more discussions like this? Go to the Chronic Pain Support Group.

oceanic50 | @oceanic50 | Jun 18, 2022
In reply to @1mepnurse "OMG, it's horrible. Your perineum area in ' on fire 24 / 7 & your rectum..." + (show)
@1mepnurse

OMG, it's horrible. Your perineum area in ' on fire 24 / 7 & your rectum feels like U have a golf ball in it. Having BM' s is difficult & then hurts afterwards, for a good while !
The upper back thighs are very sensitive to touch, as if u had shingles
There are no real answers are cures.
I SURE WOULD like to chat with others, that may have this !!
PRAYERS for research & ANSWERS, anyone !! Thx u.

Jump to this post

Chronic pain, digestive problems, saddle pain, can't sit long. Leg weakness. What has worked for others?

REPLY
oceanic50 | @oceanic50 | Jun 18, 2022
In reply to @alexking44 "I need few good doctors for pudendal neuralgia? Do you guys know any one?" + (show)
@alexking44

I need few good doctors for pudendal neuralgia? Do you guys know any one?

Jump to this post

Dr Michael Hibner
Scottsdale, AZ

REPLY
Amanda Burnett | @amandaa | Jun 18, 2022
In reply to @1mepnurse "OMG, it's horrible. Your perineum area in ' on fire 24 / 7 & your rectum..." + (show)
@1mepnurse

OMG, it's horrible. Your perineum area in ' on fire 24 / 7 & your rectum feels like U have a golf ball in it. Having BM' s is difficult & then hurts afterwards, for a good while !
The upper back thighs are very sensitive to touch, as if u had shingles
There are no real answers are cures.
I SURE WOULD like to chat with others, that may have this !!
PRAYERS for research & ANSWERS, anyone !! Thx u.

Jump to this post

Hi @oceanic50 and welcome to Mayo Clinic Connect. You'll see that I moved your post to an established conversation about pudendal neuralgia so that you could meet and connect with others that are having the same problems like @charleyzt and @charleyzt . How long have you been diagnosed?

REPLY
chpianist | @chpianist | Jun 29, 2022
In reply to @professora "Yes. I was diagnosed with Pudendal nerve intrapment in 2005. I had surgery in Houston, TX." + (show)
@professora

Yes. I was diagnosed with Pudendal nerve intrapment in 2005. I had surgery in Houston, TX.

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Hi. I live in Houston and have pudendal nerve issues.

What doctor did your surgery, and did it help?

I also have a Tarlov cyst. We aren’t sure if I have PNE or the Tarlov cyst is causing it or both things are causing issues.

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2 replies
Mentor
John, Volunteer Mentor | @johnbishop | Jun 29, 2022
In reply to @chpianist "Hi. I live in Houston and have pudendal nerve issues. What doctor did your surgery, and..." + (show)
@chpianist

Hi. I live in Houston and have pudendal nerve issues.

What doctor did your surgery, and did it help?

I also have a Tarlov cyst. We aren’t sure if I have PNE or the Tarlov cyst is causing it or both things are causing issues.

Jump to this post

Welcome @chpianist, I'm not sure @professora is still following Connect. The member's last post was Jan 2021. There are some other discussions that you might want to read through to learn what others have shared.

-- Tarlov Cyst on the spine: Any advice?: https://connect.mayoclinic.org/discussion/tarlov-cyst/
-- Perineural or Tarlov cysts: https://connect.mayoclinic.org/discussion/perineural-or-tarlov-cysts/

@rocknrollgirljenn, @violetc, @francesmharris123 and others may have some information or thoughts to share with you on your questions.

Do your doctors think the Tarlov cyst may be compressing the nerve?

REPLY
1 reply
chpianist | @chpianist | Jun 30, 2022
In reply to @johnbishop "Welcome @chpianist, I'm not sure @professora is still following Connect. The member's last post was Jan..." + (show)
@johnbishop

Welcome @chpianist, I'm not sure @professora is still following Connect. The member's last post was Jan 2021. There are some other discussions that you might want to read through to learn what others have shared.

-- Tarlov Cyst on the spine: Any advice?: https://connect.mayoclinic.org/discussion/tarlov-cyst/
-- Perineural or Tarlov cysts: https://connect.mayoclinic.org/discussion/perineural-or-tarlov-cysts/

@rocknrollgirljenn, @violetc, @francesmharris123 and others may have some information or thoughts to share with you on your questions.

Do your doctors think the Tarlov cyst may be compressing the nerve?

Jump to this post

The doctors think the Tarlov cyst may be compressing the nerve, but I have scar tissue from a fourth degree tear during child birth, so there may be entrapment elsewhere.

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robert88 | @robert88 | Oct 6, 2022

I’’ve been suffering from pudendal neuralgia for over 4 years. I can’t live with the pain. No one here has any answers. I’m afraid surgery might make the pain even worse, if I can even find anyone here in Canada able to do it. I’m trying physio, but I sometimes think stretches just tighten the pelvic muscle even more. Can anyone help me?

REPLY
3 replies
4846 | @4846 | Oct 7, 2022
In reply to @chpianist "Hi. I live in Houston and have pudendal nerve issues. What doctor did your surgery, and..." + (show)
@chpianist

Hi. I live in Houston and have pudendal nerve issues.

What doctor did your surgery, and did it help?

I also have a Tarlov cyst. We aren’t sure if I have PNE or the Tarlov cyst is causing it or both things are causing issues.

Jump to this post

Hi im in Houston

Help please. Tarlovs or PN. HAVE BOTH. PAIN IS BAD.
PLUS OFHER PELVIC ISSUES.

REPLY
Mentor
John, Volunteer Mentor | @johnbishop | Oct 7, 2022
In reply to @robert88 "I’’ve been suffering from pudendal neuralgia for over 4 years. I can’t live with the pain...." + (show)
@robert88

I’’ve been suffering from pudendal neuralgia for over 4 years. I can’t live with the pain. No one here has any answers. I’m afraid surgery might make the pain even worse, if I can even find anyone here in Canada able to do it. I’m trying physio, but I sometimes think stretches just tighten the pelvic muscle even more. Can anyone help me?

Jump to this post

Welcome @robert88, It must be just awful trying to deal with the pudendal neuralgia pain for such a long time with no relief. Hopefully other members with experience can share what helped them. While we wait for others to respond, you might want to read through the following discussion on Myofascial Release Therapy that mentions it can help pudendal neuralgia.

-- Myofascial Release Therapy (MFR) for treating compression and pain:
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

Have you heard of MFR or tried other massage therapies to see if they might help relieve the pain some?

REPLY
mikaylar | @mikaylar | Oct 7, 2022
In reply to @robert88 "I’’ve been suffering from pudendal neuralgia for over 4 years. I can’t live with the pain...." + (show)
@robert88

I’’ve been suffering from pudendal neuralgia for over 4 years. I can’t live with the pain. No one here has any answers. I’m afraid surgery might make the pain even worse, if I can even find anyone here in Canada able to do it. I’m trying physio, but I sometimes think stretches just tighten the pelvic muscle even more. Can anyone help me?

Jump to this post

I had this monster for 14 years and sat on a donut. The only thing that finally worked was anti-seizure medicine, Topamax. Took it for an unrelated issue and in 2 weeks my pudendal nerve was better.
Mikayla

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