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Ladies. How common is Vulvodynia in MEcfs ?

Have you at some stage had some of these symptoms ?

  • Yes

    Votes: 9 81.8%
  • No

    Votes: 2 18.2%

  • Total voters
    11
Messages
7
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
 

perrier

Senior Member
Messages
1,254
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
 

fredam7

Senior Member
Messages
153
@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 .
 
Last edited:

ellie84

Senior Member
Messages
120
Location
Italy
I don't have vulvodynia, but I have urethral burning and it can extend to clitoris. It has been put down to pudendal nerve neuropathy. Unfortunately I can't treat it locally, as the burning is inside the urethra :pem:
I think it's more common than what it's thought. Also, the vulvodynia diagnosis to me is just another diagnosis like fibromyalgia or cfs, it doesn't mean anything... sorry, but that's what I believe. It's just a name given to a set of symptoms (it just means your vulva hurts :rolleyes:). I think if the condition is isolated it makes sense to treat the symptoms without further investigating the cause, if too complex. But in our case, with a whole lot of other symptoms, even systemic, then the cause should be investigated while treating the symptoms. Otherwise it will always be chronic. Unfortunately, we know that's not the case with a lot of doctors.