Re: vulvodynia article

[Guest guest]

Hi there Diane

I would be happy to give any input in relation to your article as I

personally suffer from vulvodynia and live with constant pain. I hope

in time there can be a cure for other women out there who suffer in

silence anyhow let me know what you need im happy to share my thoughts

and hope other women will too.

Thanks

Kath

>

> I am working on an article on vulvodynia. I would like input from all

> of you on what you think should be included and/or any ideas or info

> you would like to give me. Of course, this is in confidence.

> I am working on getting some contacts to help me out in getting it

> published but if anyone has ideas on that also let me know.

> I do have a background in writing and, in fact, worked for a newpaper

> for a few years.

> As a vulvodynia sufferer I want there to be more knowledge out there

> and more research.

> Thank you.

> Diane

>

[Guest guest]

<< I am working on an article on vulvodynia. I would like input from all

> of you on what you think should be included and/or any ideas or info

> you would like to give me.>>

That's great : one thing I would like to see, as in a post from Dee

not so long ago, is the use of up-to-date and corretc terminology.

Whne we all use different names for the same thing it can get

confusing. See the lovely ISSVD site, patient info stuff for details.

Sorrt but my computer is on the way out and have limited use at the

moment.

Kay

[Guest guest]

I think it's great that you're writing this article. I think the main reason so many of us are having a hard time getting better is simply because there has not been enough research done on this. (but there will be soon and that is why we are ALL going to get better) Personally, I'd love it if you could include something about clitoral pain "the newest v problem to be recognized" (as Dr. wrote in the V book). From my experience, doctors know even less about how to help vulvar pain localized to the clitoral area.mrswoodwoose wrote: << I am working on an article on vulvodynia. I would like input from all > of you on what you think should be included and/or any ideas or info > you would like to give me.>>That's great : one thing I would like to see, as in a post from Deenot so long ago, is the use of up-to-date and corretc terminology.Whne we all use different names for the same thing it can getconfusing. See the lovely ISSVD site, patient info stuff for details.Sorrt but my computer is on the way out and have limited use at themoment.Kay

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[Guest guest]

I think it's great that you're writing this article. I think the main reason so many of us are having a hard time getting better is simply because there has not been enough research done on this. (but there will be soon and that is why we are ALL going to get better) Personally, I'd love it if you could include something about clitoral pain "the newest v problem to be recognized" (as Dr. wrote in the V book). From my experience, doctors know even less about how to help vulvar pain localized to the clitoral area.mrswoodwoose wrote: << I am working on an article on vulvodynia. I would like input from all > of you on what you think should be included and/or any ideas or info > you would like to give me.>>That's great : one thing I would like to see, as in a post from Deenot so long ago, is the use of up-to-date and corretc terminology.Whne we all use different names for the same thing it can getconfusing. See the lovely ISSVD site, patient info stuff for details.Sorrt but my computer is on the way out and have limited use at themoment.Kay

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[Guest guest]

I think it's great that you're writing this article. I think the main reason so many of us are having a hard time getting better is simply because there has not been enough research done on this. (but there will be soon and that is why we are ALL going to get better) Personally, I'd love it if you could include something about clitoral pain "the newest v problem to be recognized" (as Dr. wrote in the V book). From my experience, doctors know even less about how to help vulvar pain localized to the clitoral area.mrswoodwoose wrote: << I am working on an article on vulvodynia. I would like input from all > of you on what you think should be included and/or any ideas or info > you would like to give me.>>That's great : one thing I would like to see, as in a post from Deenot so long ago, is the use of up-to-date and corretc terminology.Whne we all use different names for the same thing it can getconfusing. See the lovely ISSVD site, patient info stuff for details.Sorrt but my computer is on the way out and have limited use at themoment.Kay

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[Guest guest]

Diane,

I don't know exactly what you want but if you want my

opinion, you can have it.

Vulvar Vestibulitis has been described as being a

condition where the small nerve fibers in the

vestibule have proliferated (there are too many of

them). My question has always been--Why are there too

many of them?

Most of the women with this condition have had

numerous vaginal candida infections and in fact many

of them have unremitting candidal infections. In fact

many of them say they have candida infections and the

doctors deny that there IS an overgrowth of candida.

(We all always have some candida and that is normal).

The overgrowth is the infection. So, that means to me

that these particular women more than likely are badly

reacting to small amounts of candida.

The autoimmune reaction to Gluten is known to attack

the nervous system and more specifically to cause the

proliferation of small nerve fibers.

Gluten has been found to cross react with candida.

This means that even if one is gluten free, she will

have the autoimmune reaction common to the tissue

damage from gluten sensitivity to the small amounts of

candida she may have in her system. Of course if she

has large amounts of candida the reaction can be

horrible. If she is eating gluten and it is coursing

through her system plus has large amounts of candida

the autoimmune attacks and damage to especially the

vestibule but also other parts of the genitals and

even the urinary tract (plus other parts of the body

which may be not causing pain) the damage and pain

that ensues to the nerve fibers must be huge.

I think this is basically and specifically the cause

of Vulvar Vestibulitis and Vestibulitis itself.

A major problem with diagnosing this is the fact that

the medical system uses blood tests to diagnose what

they call Celiac Disease. This has been described as

damage to the small intestine. The blood tests are

only about 50% accurate.

Beyond that, however, Celiac Disease is only one part

and aspect of the complexities of Gluten Sensitivity.

It causes other kinds of conditions as well as the

better known condition of the damaged small intestine.

If one's small intestine is not damaged but the

disease has attacked other parts of the body, the

blood tests cannot diagnose this serious condition.

There are more sensitive tests that are not yet

commonly used by the docs at a small lab called

Enterolab which can be found online.

I have no idea how many decades it will take to change

the methods and ideas of diagnosing the gluten

diseases and think people should find out on their own

about whether or not they are gluten sensitive.

Unfortunately most people won't do that as they have

ultimate confidence in the doctors who can do little

else than try to relieve pain since they don't have a

clue what is going on.

Naturally I think this is important but you can do

with this what you wish of course. I could be wrong

but I don't think so. In any case, good for you !! for

writing the article.

Arline

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[Guest guest]

I think there are MANY causes of Vulvar Vestibulitis (now known as

Vestibuladynia) and that's the root of the problem - finding the

cause. Lyme caused my VV, Gluten Sensitivities causes it for many

women and I know several people with IC that have VV.

We need more research (if men had vulvas this would be a no brainer LOL)

Molly