← Return to Anyone out there diagnosed with Pudendal Neuralgia?

LeighO57 (@leigho55)

Anyone out there diagnosed with Pudendal Neuralgia?

Chronic Pain | Last Active: 3 days ago | Replies (149)

Comment receiving replies

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

Jump to this post

Replies to "I have been preliminarily misdiagnosed as having MS; In better words, I have been shoveled over..."

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/

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!!