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.

friederike1913 | @friederike19 | Apr 10, 2021
In reply to @1mepnurse "Pelvic Floor Therapy helps some. My pain Dr injected my Pudendal nerve twice, but NOTHING changed,..." + (show)
@1mepnurse

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.

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There are several pudendal nerve strands IN THE SAME AREA ! THAT IS WHY YOU NEED HIGHLY TRAINED/ EXPERIENCED ANAESTHETIST TO PERFORM THIS PROCEDURE. THEY CAN ASSES WHICH ONE iS REACTIVE TO PAIN BY RECTAL PALPATION/ MANIPULATION. That offers the ability to exactly locate the offender.
Wish you love and relief !

REPLY
1 reply
elisad2013 | @elisad2013 | Apr 27, 2021

I have had this for 25 years following a surgery -been all over country and also stint in Mayo -live with constant pain -had already had too long when procedure of untrapping nerve came about

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1 reply
Moderator
Amanda Roe | @amandajro | Apr 27, 2021
In reply to @elisad2013 "I have had this for 25 years following a surgery -been all over country and also..." + (show)
@elisad2013

I have had this for 25 years following a surgery -been all over country and also stint in Mayo -live with constant pain -had already had too long when procedure of untrapping nerve came about

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Hello @elisad2013 and welcome to Mayo Clinic Connect. You said that you are living with constant pain. Can you clarify what you mean about your procedure and what that has meant for you?

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kenyalama | @kenyalama | Apr 28, 2021
In reply to @leigho55 "Hello@1mepurse, what happened with your ct scan if you don’t mind me asking? Hoping you got..." + (show)
@leigho55

Hello@1mepurse, what happened with your ct scan if you don’t mind me asking? Hoping you got the answers to what you were looking for. Do you have a diagnosis of PN for sure? Or is it PNE?

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Hello,
I was offered to have a procedure called pudendal nerve block for pelvic floor dysfunction. Mine is due in part to arachnoiditis and I am concerned about having anything done to my spine.
Can you walk? Do you feel shooting pain in the pelvic floor when walking?
I can only walk around my house abd sometimes not even that. Epidurals did not help neither impar ganglion blocks
I hope you find relief somehow !
I firgit to mention that I tried PT with very specialized professionals but despite my good will and theirs I do not find relief. If any, it only aggravates the symptoms

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msbaumel1234 | @msbaumel1234 | May 3, 2021
In reply to @dmburns54 "Hello, I crushed the left branch of the Pudendal N. in 1995. It took 3 years..." + (show)
@dmburns54

Hello,
I crushed the left branch of the Pudendal N. in 1995. It took 3 years for a diagnosis and until July of 2001 before I had Pudendal release surgery that finally gave me some relief. Dr Stanley Antolak, while he was on the Urology staff at the Mayo Clinic at that time was the surgeon. His office is in St. Paul, Minnesota, phone number is 763-229-2266. You will find a compassionate and one of the most knowledgeable physicians in the world about Pudendal Nerve injuries. There are many different treatments used now. Please feel free to contact me here or by private message to discuss the complexities of this terrible problem.
Darrell Burns

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I have been preliminarily misdiagnosed as having MS; In better words, I have been shoveled over to MS neurology for many years with no clear diagnosis. 24 years ago I rode a bicycle for 34 miles on an adventure with my friend, We set off with no preplanning or training. 4 days after the bike ride I starting a tingling in my feet by the end of the week I was numb from the chest down, including my entire buttocks and outer vagina. I couldnt tell If I was finished when I went to the bathroom. Very almarming and hard to describe what I was feeling. Tightness pressure like my leg was turning to stone and hard underneath the surface. I could walk and had no muscle weakness. Numerous tests, from brain scans to lumbar fluid extraction and testing Limes disease 10 days of testing . Nothing was found I had mild inflammation in my spine. 24 years later I fell directly on my left buttstocks underside and butt check with my left leg slipped out on water. I started with severe sciatica pain then the numbness. 8 Dr. Visits 3 ER visits and they still point me in the direction of MS neurology. I have had no other episode in my life except these two events. Frustration led me to searching, I was not going to stop until I had an answer. I am having the same feeling with total numbness in my left leg from my tow to my abdomen. My left buttock and the left side of my vagina opening. After days of searching I found the most common and first diagnosis was cycling I was relieved. which of course reduced my blood pressure. I have never heard of an MS person or anyone describe the numbness in the anus region. I was not going to stop until I found the right information. I am refused all treatment I asked for, I am not willing to go thru another lumber puncture ....Unless of course it is only to prove them wrong that I DO not have MS. I am currently icing my L4 L5 and S1 including my buttocks and what I call my tailbone. Large doses of oral inflammatory medicine and I have ordered a lumbar brace Since the Pudendal nerve extends to S1. If there is other information advice or questions please feel free to send me a private message. My 24 years ago experience 1997 is documented at Mayo Clinic. I have been thru the UW in Madison MS neurology as well. I write this response for the benefit of others who may have similar issues

REPLY
2 replies
Mentor
John, Volunteer Mentor | @johnbishop | May 3, 2021
In reply to @msbaumel1234 "I have been preliminarily misdiagnosed as having MS; In better words, I have been shoveled over..." + (show)
@msbaumel1234

I have been preliminarily misdiagnosed as having MS; In better words, I have been shoveled over to MS neurology for many years with no clear diagnosis. 24 years ago I rode a bicycle for 34 miles on an adventure with my friend, We set off with no preplanning or training. 4 days after the bike ride I starting a tingling in my feet by the end of the week I was numb from the chest down, including my entire buttocks and outer vagina. I couldnt tell If I was finished when I went to the bathroom. Very almarming and hard to describe what I was feeling. Tightness pressure like my leg was turning to stone and hard underneath the surface. I could walk and had no muscle weakness. Numerous tests, from brain scans to lumbar fluid extraction and testing Limes disease 10 days of testing . Nothing was found I had mild inflammation in my spine. 24 years later I fell directly on my left buttstocks underside and butt check with my left leg slipped out on water. I started with severe sciatica pain then the numbness. 8 Dr. Visits 3 ER visits and they still point me in the direction of MS neurology. I have had no other episode in my life except these two events. Frustration led me to searching, I was not going to stop until I had an answer. I am having the same feeling with total numbness in my left leg from my tow to my abdomen. My left buttock and the left side of my vagina opening. After days of searching I found the most common and first diagnosis was cycling I was relieved. which of course reduced my blood pressure. I have never heard of an MS person or anyone describe the numbness in the anus region. I was not going to stop until I found the right information. I am refused all treatment I asked for, I am not willing to go thru another lumber puncture ....Unless of course it is only to prove them wrong that I DO not have MS. I am currently icing my L4 L5 and S1 including my buttocks and what I call my tailbone. Large doses of oral inflammatory medicine and I have ordered a lumbar brace Since the Pudendal nerve extends to S1. If there is other information advice or questions please feel free to send me a private message. My 24 years ago experience 1997 is documented at Mayo Clinic. I have been thru the UW in Madison MS neurology as well. I write this response for the benefit of others who may have similar issues

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Hello @msbaumel1234, Welcome to Mayo Clinic Connect, a welcoming online community where patients and caregivers share their experiences, find support and exchange information with others. You will notice that we removed your telephone number to protect your privacy since Connect is a public forum and anyone can view the number. Members can share contact information securely by using the Private Message function of Connect (https://connect.mayoclinic.org/get-started-on-connect/#send-private-message).

I'm sorry to hear that you are having difficulties seeking treatment due to doctors not listening to you and misdiagnosis. You are not alone in your quest to find answers for something that will provide you relief.
One of the tools I've found helpful when searching for hard to find medical and research information is Google Scholar (https://scholar.google.com/) - Here are the search results sorted for 2021 using the search phrase "Pudendal Neuralgia +cycling" - https://scholar.google.com/scholar?as_ylo=2021&q=Pudendal+Neuralgia+%2Bcycling&hl=en&as_sdt=0,24

You may find the following discussion helpful:
Pudendal Nerve Entrapment/Neuropathy/Damage: https://connect.mayoclinic.org/discussion/pudendal-nerve-entrapmentneuropathydamage/

Have you tried Myofascial Release Therapy (MFR)? More information is available in this discussion on MFR - https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

REPLY
kenyalama | @kenyalama | May 4, 2021
In reply to @msbaumel1234 "I have been preliminarily misdiagnosed as having MS; In better words, I have been shoveled over..." + (show)
@msbaumel1234

I have been preliminarily misdiagnosed as having MS; In better words, I have been shoveled over to MS neurology for many years with no clear diagnosis. 24 years ago I rode a bicycle for 34 miles on an adventure with my friend, We set off with no preplanning or training. 4 days after the bike ride I starting a tingling in my feet by the end of the week I was numb from the chest down, including my entire buttocks and outer vagina. I couldnt tell If I was finished when I went to the bathroom. Very almarming and hard to describe what I was feeling. Tightness pressure like my leg was turning to stone and hard underneath the surface. I could walk and had no muscle weakness. Numerous tests, from brain scans to lumbar fluid extraction and testing Limes disease 10 days of testing . Nothing was found I had mild inflammation in my spine. 24 years later I fell directly on my left buttstocks underside and butt check with my left leg slipped out on water. I started with severe sciatica pain then the numbness. 8 Dr. Visits 3 ER visits and they still point me in the direction of MS neurology. I have had no other episode in my life except these two events. Frustration led me to searching, I was not going to stop until I had an answer. I am having the same feeling with total numbness in my left leg from my tow to my abdomen. My left buttock and the left side of my vagina opening. After days of searching I found the most common and first diagnosis was cycling I was relieved. which of course reduced my blood pressure. I have never heard of an MS person or anyone describe the numbness in the anus region. I was not going to stop until I found the right information. I am refused all treatment I asked for, I am not willing to go thru another lumber puncture ....Unless of course it is only to prove them wrong that I DO not have MS. I am currently icing my L4 L5 and S1 including my buttocks and what I call my tailbone. Large doses of oral inflammatory medicine and I have ordered a lumbar brace Since the Pudendal nerve extends to S1. If there is other information advice or questions please feel free to send me a private message. My 24 years ago experience 1997 is documented at Mayo Clinic. I have been thru the UW in Madison MS neurology as well. I write this response for the benefit of others who may have similar issues

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I am very sorry for what you are going through. It sounds very similar to my story
I also suffer from autoimmune conditions and other neuropathic diseases.
We suffer from “orphan diseases”
There’s less research money for his. And very little simpathy
With the exception of some family and some friends.
Most research money goes to heart disease and cancer. because it affects millions. What we suffer from afects a few thousands and unfortunately ( to me at least ) it won’t kill us haha
Sometimes I wish I had cancer or heart disease. This way no one would question me, I wouid not have to explain myself all the time and I would have a little light that at some point my suffering will end.. I am far from being depressed. I get to enjoy life from my scooter which my grandkids love because they get rides in it. (:
I only wish there were more options and more specialists for us. I tried very good PT but some of my other problems often get on its way.
Enjoy life the way you can. I try to use pillows, more pillows, mobility equipments and I stay home when I feel I can’t stay out and yes, I can be very very grumpy sometimes.
I hope my post doesn’t sound depressive or pesimistic. I am just trying to be realistic
All the best!!
Anma

REPLY
olivedog | @olivedog | Sep 5, 2021
In reply to @friederike19 "There are several pudendal nerve strands IN THE SAME AREA ! THAT IS WHY YOU NEED..." + (show)
@friederike19

There are several pudendal nerve strands IN THE SAME AREA ! THAT IS WHY YOU NEED HIGHLY TRAINED/ EXPERIENCED ANAESTHETIST TO PERFORM THIS PROCEDURE. THEY CAN ASSES WHICH ONE iS REACTIVE TO PAIN BY RECTAL PALPATION/ MANIPULATION. That offers the ability to exactly locate the offender.
Wish you love and relief !

Jump to this post

Where do you find anesthesiologists who do this type of chronic pain stuff..I have been diagnosed with pudendal nueralgia...not fun!!! Have tried injections to 3 branches of pudendal nerve, trigger point injections, pelvic floor therapist was too agressive and opened this can of worms. I am now seeking out a urogynecologist who can perform pudendal nerve ablatement...not an easy task...I have been in relentless horrid pain...this started 5 years ago after being over dilated in a hemorrhoid banding. Pain upon defacation. Well it ended up, 10 colorectal surgeons later to be internal rectal descent. Had this repaired with good job on rectopexy...with surgeon telling me he could not stop the nerve pain upon defacation. I was to go see a Pelvic floor Therapist, as the pain was still there. I found I thought to be a very good one...1st 2 visits doin good...3rd visit African beehive started. Right now I'm doing tens, unit...and some stretches. I've had mri sacrum, shows connection to my foot nueropathy but not this. I think I found a urogyno in West LA, Dr. Michael Tahery...head of woman's clinic at Cedar Sinai ...asking about pudendal nerve ablatement...his staff said he performed this ...being a holiday, I must wait till Wednesday to know...but it is a long journey to get there. I feel so in the dark...the urogyno who did injections is never available or ever writes I have no medical professional who gets PN...last nite I tried an old tens item I used in the past...tens anal probe. It actually feels better....so going to do sensible things I know help, as no doctor does. I do not get why doctors are not taught about the pudential nerve...most not even knowing what it is. I must be my own advocate...I had a hard time getting on here.
If you know or have advice or questions...please write...I'm in Southern California ...thank you!!!
Hope ur having a nice holiday weekend!!!
Cheri....
..

REPLY
2 replies
bustrbrwn22 | @bustrbrwn22 | Sep 5, 2021
In reply to @olivedog "Where do you find anesthesiologists who do this type of chronic pain stuff..I have been diagnosed..." + (show)
@olivedog

Where do you find anesthesiologists who do this type of chronic pain stuff..I have been diagnosed with pudendal nueralgia...not fun!!! Have tried injections to 3 branches of pudendal nerve, trigger point injections, pelvic floor therapist was too agressive and opened this can of worms. I am now seeking out a urogynecologist who can perform pudendal nerve ablatement...not an easy task...I have been in relentless horrid pain...this started 5 years ago after being over dilated in a hemorrhoid banding. Pain upon defacation. Well it ended up, 10 colorectal surgeons later to be internal rectal descent. Had this repaired with good job on rectopexy...with surgeon telling me he could not stop the nerve pain upon defacation. I was to go see a Pelvic floor Therapist, as the pain was still there. I found I thought to be a very good one...1st 2 visits doin good...3rd visit African beehive started. Right now I'm doing tens, unit...and some stretches. I've had mri sacrum, shows connection to my foot nueropathy but not this. I think I found a urogyno in West LA, Dr. Michael Tahery...head of woman's clinic at Cedar Sinai ...asking about pudendal nerve ablatement...his staff said he performed this ...being a holiday, I must wait till Wednesday to know...but it is a long journey to get there. I feel so in the dark...the urogyno who did injections is never available or ever writes I have no medical professional who gets PN...last nite I tried an old tens item I used in the past...tens anal probe. It actually feels better....so going to do sensible things I know help, as no doctor does. I do not get why doctors are not taught about the pudential nerve...most not even knowing what it is. I must be my own advocate...I had a hard time getting on here.
If you know or have advice or questions...please write...I'm in Southern California ...thank you!!!
Hope ur having a nice holiday weekend!!!
Cheri....
..

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@olivedog I cannot offer any REAL help for this unimaginable pain you must be going through. I can't believe something like this can happen and a surgeon still being allowed to operate. My deep prayers and thoughts go out to you, Cheri. At least know you have my support and I am here for you if you need it.

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1 reply
olivedog | @olivedog | Sep 5, 2021
In reply to @bustrbrwn22 "@olivedog I cannot offer any REAL help for this unimaginable pain you must be going through...." + (show)
@bustrbrwn22

@olivedog I cannot offer any REAL help for this unimaginable pain you must be going through. I can't believe something like this can happen and a surgeon still being allowed to operate. My deep prayers and thoughts go out to you, Cheri. At least know you have my support and I am here for you if you need it.

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Thank you and God Bless you...PN is horrid...I hope this new Doctor Tahery is not like the rest...this is true real bonified hideous. I was warned about the doctors here,by all....most people go to Orange County, or San Diego....but dumb me trusted them...Riverside County...Temecula,CA. originally from Newport Beach. If you ever hear anything at all...please write.thank you so much for caring....this is real hard, I have a friend in Sacramento who is the same or worse. U would not believe what she has been put through. Thanks, Cheri

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