Ladies. How common is Vulvodynia in MEcfs ?

[gregf]

I know a doctor who is a very good man who has been helping ME patients for many years.

He has a question. How common is Vulvodynia in MEcfs patients ?

Vulvodynia on Wikipedia.

​

Vulvodynia​

SpecialtyGynecology​

Vulvodynia is a chronic pain syndrome that affects the vulvar area and occurs without an identifiable cause.[1] Symptoms typically include a feeling of burning or irritation.[2] It has been established by the ISSVD that for the diagnosis to be made symptoms must last at least 3 months.[3]
The exact cause is unknown but is believed to involve a number of factors, including genetics, immunology, and possibly diet.[2] Diagnosis is by ruling out other possible causes.[2] This may or may not include a biopsy of the area.[2]
Treatment may involve a number of different measures; however, none is universally effective, and the evidence to support their effectiveness is often poor.[2] Some of these measures include improved vulvar care, dietary changes, medications, counselling, and, if conservative treatment is not effective, surgery.[2] It is estimated to affect up to 16% of women.

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[Dechi]

I’ve never heard of that and never heard anyone talking about it. It doesn’t sound very common.

 

[taniaaust1]

Greg, I'd think not common. Over all the years I've been here, I can't remember having anyone tell me they have this. I only know of one woman with it and its someone who does not have ME/CFS and has no other health issues. So if your dr friend has a patient with that, I'd think it is probably unrelated to their ME/CFS.

ME/CFS people do commonly have some sexual issues but not that eg many of us have had issues with numbness in the private parts or not being able to climax due to it causing crashing..

 

[kangaSue]

Don't know that it pertains to ME/CFS specifically but anyone having vulvodynia should have it ruled out that it is not a vascular problem, from having either May-Thurner Syndrome (MTS) or renal Nutcracker Syndrome (NCS - which in turn, more usually causes vulvadynia from causing Pelvic Congestion Syndrome. PCS is not always involved though and vulvadynia can be from other collateral formation that has developed from having NCS).

NCS would not even be considered a cause of vulvodynia if left renal vein narrowing doesn't appear to be significant but it can be a cause of it with narrowing of as little as 60%, but this degree of narrowing is often interpreted as being just a natural variant in left renal vein diameter.

Incidently, NCS can also be a cause of chronic fatigue, and I know of several ladies who were first diagnosed with CFS before an NCS diagnosis later came to light. NCS and MTS often occur together too.

 

[Rebeccare]

Vulvodynia seems like it might be a catch-all diagnosis. That is, another diagnosis--possibly a rare one--may fit better, but perhaps the doctor isn't knowledgeable enough about these other possibilities so the patient just ends up in the vulvodynia pile.

I actually do have chronic gynecological issues that are likely autoimmune related. It took several months to get an accurate diagnosis and effective treatment--had I not been able to see the specialist that I did, I would probably have a diagnosis of vulvodynia.

Some gynecological diagnoses that may be related to autoimmune disorders include lichen sclerosis, lichen planus, and desquamative inflammatory vaginitis. These are conditions that some doctors may not be familiar with, so it's likely that they could be misdiagnosed as vulvodynia.

I’ve never heard of that and never heard anyone talking about it.

@Dechi it may be that it's not a common problem, but it also may be that it's more common than we think because people are embarrassed to talk about it. I've never mentioned my issues before now.

 

[rosie26]

I have this but it was caused by an infection when I was 20 years old. The infection was cleared but I was never the same again. I later (10 years) went on to get ME and POTS via flu.

I personally don't think it would be common, depends on where the infection was, most PwME get sick after some kind of infection. It just happened that I had a vaginal infection with complications and then years later a flu kicked of ME and POTS.

As @RebeccaRe said, we really don't know how common it is because it isn't really talked about. It took me a long time to talk about what happened to me on the forum but I felt I had to in case it shed any light on things and it also is good to hear everyone's history leading up to ME. It helps to give us clues. It seems there are a lot of entrances into ME and we end up on a same pathway experiencing PEM.

 

[belize44]

Well, I don't mind saying that I have this, along with CPD and IC. I am currently seeing a specialist who has given me nerve block injections and medications that have helped enormously. And yes, it's true that it is not discussed a lot because it is after all a very personal female issue (although I have heard that men can suffer pelvic pain too.)

 

[Sundancer]

not having had any diagnostics on it but sounds like that's what it is called, oow.

started about a year before I crashed into bed-bound. Continual hurt, being very careful wiping. Not only vulvar but vaginal too. the last pap-smear I had was hell, even though the GP I had at the time was very gentle.

Since I'm on high dose hydroxycobalamin ( injections) it getting decidedly better.

 

[fredam7]

Well, I don't mind saying that I have this, along with CPD and IC. I am currently seeing a specialist who has given me nerve block injections and medications that have helped enormously. And yes, it's true that it is not discussed a lot because it is after all a very personal female issue (although I have heard that men can suffer pelvic pain too.)

Same . Careful if they try to give you any estrogen creams , doesn't matter how young , they often try this and it makes it worse . They can compound testosterone and a smidge of estrogen . I had this way before I knew I had CFS or maybe willing to admit , doesn't matter . I too have IC. All these are more of the same auto immune and nerves .
Abandon toilet paper and tampons . Wash with lukewarm water every time you use the restroom , cleaner and less agitation . You can also not use underwear at night , the less , the better .
The original poster is correct , there is definitely a connection between whatever this total body breakdown is and vulvodynia

Mine started immediately after using the nuvaring. It took 3 years before I saw a gyn with a brain , she was a pelvic pain specialist and she said the nuvaring does it . Check your testosterone levels , they may be non existent . That cream helped , a lot . Years later I was hsvinb endocrine problems and went to see if the Hashimotos was under control and the endo ran the hormones and testosterone non existent . Birth control , especially any kind you insert , throws the levels off and it can't come back . They don't know why .
So I continue to say, the pharmaceuticals are killing people

 

[fredam7]

Vulvodynia seems like it might be a catch-all diagnosis. That is, another diagnosis--possibly a rare one--may fit better, but perhaps the doctor isn't knowledgeable enough about these other possibilities so the patient just ends up in the vulvodynia pile.

I actually do have chronic gynecological issues that are likely autoimmune related. It took several months to get an accurate diagnosis and effective treatment--had I not been able to see the specialist that I did, I would probably have a diagnosis of vulvodynia.

Some gynecological diagnoses that may be related to autoimmune disorders include lichen sclerosis, lichen planus, and desquamative inflammatory vaginitis. These are conditions that some doctors may not be familiar with, so it's likely that they could be misdiagnosed as vulvodynia.


@Dechi it may be that it's not a common problem, but it also may be that it's more common than we think because people are embarrassed to talk about it. I've never mentioned my issues before now.

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 .

 

[rosie26]

Careful if they try to give you any estrogen creams , doesn't matter how young , they often try this and it makes it worse . They can compound testosterone and a smidge of estrogen . I had this way before I knew I had CFS or maybe willing to admit , doesn't matter

Same here, oestrogen cream became intolerable after a couple of days, and I also had this before I got ME.

 

[fredam7]

@rosie26 yes, exact same thing! It was estrace and they said maybe the fillers , no it's all of it.
I long stopped using the compound cream because so many other things happened , but it needs to be testosterone based , strange but true . And she added vitamin e .
The nuvaring for 1 month , did me in.
So many regrets .

I'm glad the injections are helping

Get one of those things that look like you would water plants with them , You fill that with Luke warm water and rinse after urinating . You can lightly pat with the softest tissue afterwards. Or get a bidet. Whatever works for you.

 

[rosie26]

@rosie26 yes, exact same thing! It was estrace and they said maybe the fillers , no it's all of it

I was given ovestin cream 1mg application once daily. About 2-3 days in it felt like my cervix was going to rupture. There was a full, heavy, achy pressure, really unpleasant.

I'm glad the injections are helping

Get one of those things that look like you would water plants with them , You fill that with Luke warm water and rinse after urinating . You can lightly pat with the softest tissue afterwards. Or get a bidet. Whatever works for you.

I think this reply was meant for @Sundancer

 

[Sundancer]

I'm glad the injections are helping

Get one of those things that look like you would water plants with them , You fill that with Luke warm water and rinse after urinating . You can lightly pat with the softest tissue afterwards.

thanks, I did use something like that, and inded, lightly patting instead of wiping.
I'm glad to say that I don't need the waterbottle anymore.

 

[belize44]

Wow, I am shocked about the Estrogen cream! I can remember not having these issues until I complained of frequent symptoms of UTI, and I was started on Estriol. Then I began having more and worse symptoms. Unfortunately, out of desperation, I went back on it again just yesterday. I did ask the Gyn if she could order labs to test my other hormone levels, but she said that it wasn't necessary since I was already obviously menopausal. Maybe I can do it myself, via a saliva test.

Also, I use what is called a Perineal wash bottle; I use it to rinse after urinating.

 

[Daymoon]

I’ve had vulval irritation and pain and swelling dor a while. My gyno says it’s sexondary to fit flora imbalance. The good news is I just found the perfect cream after years of trying things: VMagic. Totally natural and healing. Also pelvic floor physical therapy has been life changing, if you suspect any myogascial tension of FM trigger points.

 

[Daymoon]

Oops—secondary to “gut” flora imbalance, that is.

 

[kangaSue]

Some of the suspects to cause vulvodynia are neuropathy, muscle spasm pain or inflammation. A novel treatment that can be tried for the first two things is a nitrate, particularly in light of there also being some suspicion that vulvodynia may also occur because of a deficiency in nitric oxide production.

L-arginine or l-citrulline supplements may be similarly beneficial in this regard too.
https://www.ncbi.nlm.nih.gov/pubmed/18627331

 

[GlassHouse]

I had this severely for years since I was 23 (I’m 28 now). But I found a solution for me that maybe could help someone else.

For me it started after I had a bacterial vaginal infection that didn’t respond to antibiotics. Doctors refused to believe I could still have the infection until I was tested again at a new clinic 8 months later and was still positive. I also get 13 yeast infections a year due to not being able to maintain a normal pH during my cycle. I am not producing most hormones (cortisol, thyroid, prolactin, estrogen, testosterone, vasopressin, etc). To have my skin touched was like pouring rubbing alcohol over an open cut.

However, this is one of the only things I’ve made huge progress in with in my illness! The main fix was first getting off birth control (it was dropping my testosterone too low, which affects the vulva since that tissue is the same tissue that would have developed into a penis if I’d had a Y chromosome).

Then I started a compounded estradiol/ testosterone cream. That cream was life changing. I do not have the skin burning feeling anymore. However I do have muscle dysfunction and EDS so my left pelvic floor needs constant physical therapy since my left hip partially dislocates all the time and has caused tons of muscle spasms in the surrounding areas.

I found out about the hormone cream on a forum of other young women with vulvodynia who had failed gabapentin, lidocaine, etc and, like me, couldn’t have sex anymore due to the extreme nature of the pain. One girl talked about how the cream changed her life and linked the study. I sent the paper to my ob/gyn and he was so helpful and found a pharmacy to compound it for me.

The cream is E2/TEST 0.03%/0.01%

This was the study:
The Treatment of Vestibulodynia with Topical Estradiol and Testosterone

Lara J Burrows, MD, MSc and Andrew T Goldstein, MD

 

[rosie26]

L-arginine or l-citrulline supplements may be similarly beneficial in this regard too.
https://www.ncbi.nlm.nih.gov/pubmed/18627331

Thanks @kangaSue I will keep this in mind