Vulvodynia: The Vulvar Fibromyalgia

Chronic Fatigue Syndrome and Fibromyalgia can cause a great deal of pain for its sufferers. But imagine having excruciating pain in your vaginal area and not being able to have sexual intercourse, ride a bike, sit on a chair or even walk more than a few feet.

New findings have shown that illnesses like Interstitial Cystitis are related to Fibromyalgia and Chronic Fatigue Syndrome and another related illness to Interstitial Cystitiscan be added to that list – vulvodynia.

Vulvodynia, a condition that causes shooting and searing pain in a woman’s vagina, is being called the a type of “vulvar Fibromyalgia”.

Vulvodynia is an illness, like CFS & Fibromyalgia, where the patient will be told that there is nothing that can be done for them and they just have to learn to live with it. Yeah, right. That’s easy to say when you aren’t the one suffering!

Over time research is starting to reveal new things about vulvodynia that we didn’t know before and their relation to CFS & Fibromyalgia.

One study suggests an unusual response to an infection plays a role; two genes that block inflammatory cytokines and respond to yeast/bacterial infections appears to be under functioning. That’s double trouble; that means vulvodynia patients appear to have trouble mounting the right immune response to yeasts or bacteria and in turning off the inflammatory response once it occurs. Several researchers believe the later is exactly what’s happening in chronic fatigue syndrome.


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  1. I was just diagnosed with vulvodynia yesterday. I’ve been complaining of this pain for over a year and was told by GP, no tests will be done, you just need to learn to live with pain. I went behind the GP’s back and saw a gynecologist who said this pain is not gynecological and referred me to a Urogynecologist that didn’t do anything more than 1st Dr. and said my cervix a mess and diagnosed me with vulvodynia, lepator malignia and painful bladder syndrom. Was told not to eat most fruits, only 40oz water per day, no other liquids are allowed, lower my pain medication, put a jel(freezes) you on a swab at night in the lower part of opening to vagina and wear it for the night, in morning rub it back and forth for 5minutes. They are sending me to sex therapist and physiotherapist. Already went once to physiotherapist who goes into vagina and presses and massages point areas. I right now cannot stand for more than 30minutes without it causing severe burning pain, shooting up into vagina, I get lower back pain that I have never had in my life, I cannot walk a small block or have intimate relationship with husband. I want to cry and scream all the time as I am not able to do anything. I already suffer with permanent muscle damage in both arms(epicondylitis) and right wrist carpal tunnel with left starting because I compensate. I have a bulging disc in my neck as it took 10yrs for my workplace to accomodate me. I no longer can work due to pain and now depression. I don’t know what to do, I have never had a vaginal yeast infection or a bladder infection. I thinki I’ve been misdiagnosed. Is anyone the same, squatting or sittups are painful. I pee sometimes when I cough, sneeze or exercise. Doctor says I need to train my bladder. How??? Please help!!!

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