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.

dhc684 | @dhc684 | Nov 16, 2020
In reply to @johnbishop "@dhc684 Not sure if this helps but thought I would share it since so many people..." + (show)
@johnbishop

@dhc684 Not sure if this helps but thought I would share it since so many people are asking the same questions...

"What kind of doctor do you see for pudendal neuralgia?
There is no particular specialty of physicians who treat PN, but when searching for a physician locally you may want to start your search with a sports medicine doctor, neurologist, gynecologist, urologist, pain medicine doctor, interventional radiologist, orthopedist, neurosurgeon, or plastic surgeon who has an ..."
List of Doctors | Health Organization for Pudendal Education: https://www.pudendalhope.info/node/54

Mayo Clinic has a great sports medicine department, as well as neurology and the others listed. If you would like to seek help from Mayo Clinic, contact one of the appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.

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Thanks for the lists. I was also hoping to get references from people who have had surgery and hear their experiences with particular doctors.

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Mentor
John, Volunteer Mentor | @johnbishop | Jan 1, 2021

Hello @bwardccrn, Welcome to Mayo Clinic Connect. Thank you for the private message. I thought I would answer it in this discussion on Pudendal Neuralgia since I think this is the discussion you may have been reading through to find out if any members have tried botox injections. You mentioned you have been having PT with a specialist in pelvic pain with little effect. The doctor mentioned botox injections into the pelvic floor muscles but was skeptical the injections would work since she has not had many patients who have tried the injections. I'm hoping other members in this discussion with experience may be able to share it with you.

@richman54660 @harper2018 and others have discussed related treatments in another discussion and may have some thoughts or suggestions to share with you -- Have had chronic anal pain for 6 years: https://connect.mayoclinic.org/discussion/very-quick-summary-20-yr-old-have-had-chronic-anal/

Does your doctor give the botox injections or would you have to go to another specialist?

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1 reply
bwardccrn | @bwardccrn | Jan 2, 2021
In reply to @johnbishop "Hello @bwardccrn, Welcome to Mayo Clinic Connect. Thank you for the private message. I thought I..." + (show)
@johnbishop

Hello @bwardccrn, Welcome to Mayo Clinic Connect. Thank you for the private message. I thought I would answer it in this discussion on Pudendal Neuralgia since I think this is the discussion you may have been reading through to find out if any members have tried botox injections. You mentioned you have been having PT with a specialist in pelvic pain with little effect. The doctor mentioned botox injections into the pelvic floor muscles but was skeptical the injections would work since she has not had many patients who have tried the injections. I'm hoping other members in this discussion with experience may be able to share it with you.

@richman54660 @harper2018 and others have discussed related treatments in another discussion and may have some thoughts or suggestions to share with you -- Have had chronic anal pain for 6 years: https://connect.mayoclinic.org/discussion/very-quick-summary-20-yr-old-have-had-chronic-anal/

Does your doctor give the botox injections or would you have to go to another specialist?

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It would be another specialist. The referral was to a G I surgeon

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Jan 2, 2021
In reply to @bwardccrn "It would be another specialist. The referral was to a G I surgeon" + (show)
@bwardccrn

It would be another specialist. The referral was to a G I surgeon

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@bwardccrn, There is another discussion you might find helpful about Myofacial Release Therapy. @richman54660 mentioned he had some good results in a post earlier in this discussion here - https://connect.mayoclinic.org/discussion/pain-in-the-butt-cant-sit-down/?pg=8#comment-437969. Here is the discussion if you would like to learn more:

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

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professora | @professora | Jan 21, 2021

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

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4 replies
Mentor
John, Volunteer Mentor | @johnbishop | Jan 21, 2021
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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Hello @professora, Welcome to Connect. Thank you for sharing your experience with Pudendal nerve entrapment. It sounds like the surgery must have been a success. Are you able to share a little more about the surgery?

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1mepnurse | @1mepnurse | Feb 3, 2021

OMG, yes...well, every symptom.of it, but blocked THAT particular nerve with cortisone. It was NO HELP...several attempts, so it's not that, exactly.
Yes, it's horrible..the burning pain, rectal issues, etc. Have to take my Gabapentin 600 mgm for burning pain & do not take it late !
Have had it maybe 6 months. How's about you? So glad to talk with you! I am in SC.

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1 reply
1mepnurse | @1mepnurse | Feb 3, 2021
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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I am feeling desperate. Everything I have read...nothing really works! Pls help us all..what type surgery, sir? Thx u so much.

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jcbonne1 | @jcbonne1 | Feb 4, 2021
In reply to @1mepnurse "OMG, yes...well, every symptom.of it, but blocked THAT particular nerve with cortisone. It was NO HELP...several..." + (show)
@1mepnurse

OMG, yes...well, every symptom.of it, but blocked THAT particular nerve with cortisone. It was NO HELP...several attempts, so it's not that, exactly.
Yes, it's horrible..the burning pain, rectal issues, etc. Have to take my Gabapentin 600 mgm for burning pain & do not take it late !
Have had it maybe 6 months. How's about you? So glad to talk with you! I am in SC.

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Please help I forgot how to o make comments

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jcbonne1 | @jcbonne1 | Feb 4, 2021

Sorry I'm having really bad difficulty, for over 3 year's but getting really really bad. I feel like I'm losing control of my muscles and not able to swallow pain can make me scream now bright lights and loud noise make me scream I can't stop the muscles of my mouth move

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