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.

John, Volunteer Mentor | @johnbishop | Feb 4, 2021

In reply to @jcbonne1 "Sorry I'm having really bad difficulty, for over 3 year's but getting really really bad. I..." + (show)

@jcbonne1, Do you think your difficulty swallowing might be due to Barrett's esophagus diagnosis you mentioned in a previous post? I wonder if you might find reading through the following discussions to see if they are helpful?

- Barrett’s esophagus: https://connect.mayoclinic.org/discussion/barretts-esophagus-1/
- Barrett’s esophagus-friendly diet: https://connect.mayoclinic.org/discussion/be-friendly-diet/

sara | @sudhasaravanan | Feb 16, 2021

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

Did the surgery work?

Amanda Roe | @amandajro | Feb 22, 2021

Hello @sudhasaravanan and welcome to Mayo Clinic Connect. I can see you are interested in hearing how surgery went for @professora so have used the feature that will notify that member of your interest to hear more.

If you'd like to reply to a specific member, just use their handle and include the "@" sign in front and they will receive an email notification.

1mepnurse | @1mepnurse | Mar 23, 2021

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.

lioness | @lioness | Mar 24, 2021

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

@1mepnurse I'm so sorry you have this that's horrible

Erika | @erikas | Mar 24, 2021

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

@1mepnurse I agree with @lioness, that does sound terrible.

Members @deneenm & @glenbard have discussed a similar topic in the past and may be of help.

Below I have linked similar discussions that you may find useful and you may wish to scroll through them.
- Postherpetic Neuralgia (Shingles) nerve damage https://connect.mayoclinic.org/discussion/postherpetic-neuralgia-shingles-nerve-damage-around-eye-eyebrow-forehead-scalp-8/
- Trigeminal Neuralgia* https://connect.mayoclinic.org/discussion/trigeminal-neuralgia-2273cc/
- Has anyone here had or know about Pudendal Nerve Entrapment? https://connect.mayoclinic.org/discussion/has-anyone-here-had-or-know-about-pudendal-nerve-entrapment/

May I ask how long these symptoms have been going on? Was there a gradual or sudden onset?

mmoss | @mmoss | Mar 31, 2021

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

Pudendal Nerve Pain Treatment

Has anyone had this condition and gotten help? If so did the pain go away? What kind of Dr did you see and how do they diagnose? Thank you.

Erika | @erikas | Apr 5, 2021

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

@mmoss I'm assuming that you are having this issue and I'm sorry to hear that.

I moved this question to an existing discussion so you could connect with members like @1mepnurse @deneenm & @glenbard

Here are three related discussions I referenced earlier but they seem pertinent to you now.
– Postherpetic Neuralgia (Shingles) nerve damage https://connect.mayoclinic.org/discussion/postherpetic-neuralgia-shingles-nerve-damage-around-eye-eyebrow-forehead-scalp-8/
– Trigeminal Neuralgia* https://connect.mayoclinic.org/discussion/trigeminal-neuralgia-2273cc/
– Has anyone here had or know about Pudendal Nerve Entrapment? https://connect.mayoclinic.org/discussion/has-anyone-here-had-or-know-about-pudendal-nerve-entrapment/

May I ask what kind of a provider you have seen already?

1mepnurse | @1mepnurse | Apr 6, 2021

In reply to @erikas "@mmoss I'm assuming that you are having this issue and I'm sorry to hear that. I..." + (show)

Pelvic Floor Therapy helps some.
My pain Dr injected my Pudendal nerve twice, but NOTHING changed, so it's apparently some other unknown nerve. God love & help all others with these symptoms...Gabapentin helps SOME, but sadly, gaining weight.
Upper back thighs have burning ( like shingles)...some times worse than others.
We sure need RESEARCH for answers ! Praying.

lioness | @lioness | Apr 9, 2021

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

@mmoss When you mention burning I'm in P.T right now for front thighs that are burning I go today its been a week of exercise he gave me to do at home .I had to ask Dr for referral he wanted to do surgery but therapy is helping me maybe it will help you. For urine smell Are you drinking enough water ?

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