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DiscussionAnyone out there diagnosed with Pudendal Neuralgia?
Chronic Pain | Last Active: Oct 14 2:50pm | Replies (200)Comment receiving replies
Replies to "I have been preliminarily misdiagnosed as having MS; In better words, I have been shoveled over..."
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
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/