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!

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.

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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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@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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@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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@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

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@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/

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@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

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