Ladies. How common is Vulvodynia in MEcfs ?

Have you at some stage had some of these symptoms ?

  • Yes

    Votes: 8 88.9%
  • No

    Votes: 1 11.1%

  • Total voters
Hello. Yes, ive had this. Treated with low dose amytriptaline. The consultant at the hospital said she shes it a lot in cfs/me patients. Very anecdotal, but my experience for what its worth. T


Senior Member
Ob/gyns like diagnosing with lichen sclerosis and handing you steroids . Happened to me twice only there needs to be a biopsy . LS is rare

Vulvodynia is an umbrella term but with specific symptoms and often one has vulvar vestibulitis which can't be confused with LS.

Another thing , many women with VV, think they're hsvinb UTIs early on . Dr's like to give cipro and cipro will usually destroy a person , I have damage from cipro and it is progressive and even when my UA was negative , they would give me cipro . Even after the warnings . Which I didn't know about , too busy "accomplishing" , what a joke , right ? Further , my sister , who is an ob/gyn, who has never , ever taken any interest or offered any help and even laughed when my spine was permanently damaged , was always ready to call in cipro across the country . I thought it was her way of being nice . I took a lot of cipro , she didn't say hey , no one can have all these UTIs.
After the pain became so acute , I sought out other dr's , I learned they were not UTIs, it was the VV.
Be careful with someone telling you that you have a vaginal
Infection . In France , when women have uti's , they take an over the counter herb , they don't give them antibiotics, many of which are harmful .

If VV is caught early and things are done to let it heal , it can go away , otherwise , its chronic and very painful .
Dear Fredam7
Do you happen to know which herbs are used in France? and is it compresses, or drinking tea that is the route? Thank you


Senior Member
@perrier i sent a reply to dm

The herb is in a pill form and I forgot the name as I don't have access . If you're in France , you can ask a pharmacist what it is , it's sold over the counter and is for urinary tract infections , bacterial .

Vulvar vestibulitis, is a chronic condition and is not an infection at all. It is a pain syndrome of the vestibules . The pain is inside the vagina , concentrated at the first few inches . A pelvic pain dr addresses this although a very good gynecologist can catch it and then send you to a pelvic pain dr which is a gynecologist with a subspecialty in pelvic pain .

VV can go undiagnosed for years because ob/gyns are some of the worst dr's around . My observation is it's mostly female dr's who hate themselves and treat their patients terribly because well, all are women .

But there are a few gems out there . I saw 3 gynecologists. The first told me I have VV because I have "discord", over and over she said this . Never referred me to pelvic pain or suggested any treatment option . I went back a year later begging and she said , "discord ". She was extremely rude as well

Second ob/gyn told me I have lichen sclerosis and gave me steroids . This is rare and needs a biopsy and I didn't think it was correct and still don't.

Another year passed and I found a pelvic pain dr . She was good and told me it's now chronic VV and how unfortunate it is that it went untreated .

I could walk around back then although severe back pain . But I would get such horrid shocks vaginally that I would have to atop
In the street and was so embarrassed . It was so bad , like being electrocuted . Any pants Seam, sitting on a chair , walking , tsmpon and ANY cream or cleanser , causes agony .

You can try vanicraam cleanser or try different handmade soaps. They should be without fragrance , oats or surfactants . Do not use dr bronners , way too harsh even diluted .

Sometimes using ice can help . It's strange , I really wonder how all of this is connected but I think it is . Wish the original poster would share why their dr thinks it's connected .
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