Vulvodynia and other neurological diseases?

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Vulvodynia and other neurological diseases? Empty Vulvodynia and other neurological diseases?

Post  wuhujen on Sat Apr 14, 2018 8:00 pm

Hi All,
I first experienced symptoms in 2010, but it was almost two years later before I got a diagnosis and then another 6 months of medication and PT to get real relief. It's been pretty manageable for the past few years, but I've recently had a flare up. Additionally, I've been having nerve pain that feels similar to my vulvodynia pain in my hands and feet. My doctors are testing for MS and a whole host of scary things, but since the pain feels so similar and vulvodynia is such a relatively unknown and under-researched disease, I was wondering if anyone else had found links between vulvodynia and other types of nerve pain?

wuhujen

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Post  Jazzygirl on Mon Jun 04, 2018 7:44 pm

Have they found anything else wrong?

Jazzygirl

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Post  Denised10 on Mon Jun 25, 2018 10:58 pm

Hello,
I had this for 6 yrs 2012 and i get similar pain down my legs and feet but I also get nauseous too... it's so frustrating !
I also have good days and bad ..

Denised10

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Post  mary jane on Sat Jun 30, 2018 2:31 pm

There is a small possibility to get referred pain in your feet or toes. Referred pain is when you have neurological damage or nerve pain in one area however feel the pain in a completely different area. I used to get shooting pain in my toes when my pain was not under control.
The only other neuro conditions that occur along with vulvodynia seem to be fibromyalgia, central sensitization and pudendal neuralgia (the latter being very, very rare).
Nerve pain in hands and feet can also occur from extreme anxiety.
It's best to get checked out for everything however, as only specific tests can check for nerve abnormalities.
mary jane
mary jane

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Post  Guest on Sat Jul 28, 2018 6:30 am


Ladies!!!
I am trying to get the word OUT!!! 20 years of “vulvadynia”, ic, vestibulitis. Whatever the docs want to calll it. It’s been beyond depressing and has made me feel downright crazy at times. Incredibly painful, living in silent pain, going to doctor after doctor just to hear that “my mind is causing my vestibular area to flare up”.
PLEASE INSIST ON GETTING TESTED FOR A MICROORGANISM BACTERIA CALLED UREAPLASMA!!!!!!!!!!!!!!!!!
It’s a VERY hard bacteria to find!! Does NOT show up in urine cultures!! There’s a very specific test to find it and you MUST insist on being tested!!!! PLEASE BELIEVE ME!!! After 20 years of this craziness I FINALLY was diagnosed with this bacterial uti and THIS is what has caused the vulvadynia!!!
Doctors don’t even know about this. My new primary care tested me after showing up with a Walgreens uti rest showing positive leukocytes. The urine culture came back negative as usual. She had a sad talk with me about vulvadynia.
I don’t know what came over her to send the urine off to a lab and get it checked for ureaplasma, but she did. I am SO grateful. I am FINALLY HEALING quickly!!
Ueraplasma only responds to certain antibiotics. I’m on doxycycline. 14 days and it may take several rounds. This is a serious bacteria and it can kill you.
Some doctors will dismiss this test and bacteria and say it’s part of our flora. NO-INSIST. If it shows up as an infection because it’s colonized, it IS the cause of vulvadynia.
GET TO THE BOTTOM OF THIS VULVADYNIA LADIES!!! DO NOT BACK DOWN!! FIND A DOC WHO WILL TEST YOU for UREAPLASMA!!! DO NOT WASTE 20 YEARS OF YOUR LIFE GOING THROUGH THIS HELL LIKE I DID.
I’ve been through biofeedback, neurontin, creams, specialist after specialist.
I’ve found small handful of other ladies on the internet who have posted the SAME about their ureaplasma diagnosis. They are doing cartwheels like I am!!!
I am really trying to get to word out!!! I promise you ladies!!!! There is a CURE!!!
DO NOT GIVE UP!!!!! I will reply to as many women as I can!

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