another website!

**naomi** Mon Aug 02, 2010 8:17 pm

http://www.vulvodyniasupport.com/guest1.html

"Vulvodynia interferes with daily functioning, such as sitting walking and most other physical activity. It often affects one's ability to engage in sexual activity. It can impair one's ability to work, and participate in a social life. These limitations often lead to depression and thoughts of suicide.

We need ongoing and multiple approached researchers to learn the underlying cause of Vulvodynia. We need proper care and medications that help control the pain and discomfort, that helps all forms of Vulvodynia patients to cope with their daily lives. We need dedicated professionals to start and continue researching this disease until a cure is found. We need compassionate professionals to join in the fight against the ignorance that engulfs the sufferers of the disease. We need dedicated people who are committed to figuring out what causes Vulvodynia, and how to treat and cure Vulvodynia.

It has been over 100 years since the "discovery" of Vulvodynia and yet Vulvodynia is virtually ignored by the medical and research community. It is time for the medical and research community to step into the 21st Century and recognize and legitimize our disease and pain by forming a national research foundation that will continually study this disease until a cure is found. It is time to stop our suffering!"

Lauren Kunis New York City USA

Here-here! I completely agree Smile

could we not go public and DEMAND more research into this area instead of researching into...oh I dont know I cant think of anything witty right now!!! Very Happy

Sarah001 Mon Aug 02, 2010 8:30 pm

I'm not quite sure if that website is still active, the guestbooks are from years ago and the link to the recent one doesn't work on my computer at least. The most recent guestbook seems to be from 2002 so it looks like the campaign with the open letter was a while ago and clearly didn't help or we wouldn't all be wondering how to help ourselves now!!

maggie Mon Aug 02, 2010 8:34 pm

100 years since the discovery of vuivodynia, yet the GP's have never heard of it, i can't belive that it's been around that long.

maggie x

**naomi** Mon Aug 02, 2010 8:38 pm

DOH!

Well I have plenty of time on my hands to keep plodding along with the research and pestering specialists now I have lost my job through this!!!!!! grrrrrrr

On my good days I feel up to it so will continue with my plodding. Hopefully will uncover some answers for us

xxx

these support groups might still be alive...maybe!
http://www.vulvodyniasupport.com/support.html

maggie Mon Aug 02, 2010 8:41 pm

Well done you, keep up the good work. thanks for info.

maggie

**naomi** Mon Aug 02, 2010 9:45 pm

RIGHT! try this link folks...

http://vulvodyniasupport.com/

Sarah001 Tue Aug 03, 2010 11:31 am

I applied to join the yahoo group for vulvodynia and finally got accepted after a few weeks only to find I'd stupidly forgotten my yahoo account details and couldn't sign in! I've reapplied but heard nothing yet strangely I'm receiving emails from some members of that group in my email account?! Some seem to be spam and others seem to be genuine asking for advice (which I don't really have). I'm not totally sure it isn't the same stuff that's on Dr Glazer's site in the guestbooks, I'll have to wait and see if they will accept me again and perhaps I can remember my details this time! Embarassed