Chelle/Vestibulodynia

[Guest guest]

Hi Chelle, - when I saw Dr. Conway, he corrected me twice that I

was using the wrong word. He didn’t want to hear Vulvodynia or Vestibulitis –

he said any kind of vulvar pain should be called only Vestibulodynia ONLY. Excuse

me, I thought – who cares when I am here in pain. LOL Supposedly he went to

some conference and they all agreed to that terminology. I agree with what you

have written though!!

nne

From:

VulvarDisorders [mailto:VulvarDisorders ] On

Behalf Of Chelle

Sent: Friday, June 06, 2008 12:44 PM

To: VulvarDisorders

Subject: Re: Chelle/Vestibulodynia

Hey nne,

I'll try to give my take on this whole name thing...*grin* -- From what I

understand, the only term that has changed is vestibulitis, and the ISSVD

(International Society for the Study of Vulvovaginal Diseases) officially

did change it to vestibulodynia a few or so years back. http://issvd.org/

As we know, the term vulvodynia is a just a catch all phrase that means,

" vulvar pain " . There are women on the group that do suffer from

generalized vulvodynia -- which is constant vulvar pain that can be located

'anywhere' on the vulva -- but it is not confined only to the vestibule.

Now if a woman has vestibulitis/vestibulodynia the pain is 'confined' to

the vestibule only. Unfortunately, 'some' have both types of pain

(generalized vulvodynia 'and' vestibulodynia). So, as far as I know the

term Vulvodynia is still used to describe vulvar pain.

I wish the ISSVD would be more concerned about treatments!

I'll resend a good article written by E. -- where she writes about

vestibulodynia.

~Chelle

millburytimes wrote:

Chelle, I found out today that the names have been changed

permanently. Vestibulitis and Vulvodynia are gone and the new name which we

should refer all vulvar conditions is what you quoted - Vestibulodynia

nne

From: VulvarDisorders [mailto:VulvarDisorders ]

On Behalf Of Chelle

Sent: Thursday, June 05, 2008 12:20 PM

To: VulvarDisorders

Subject: Re: support for partner

Hi ,

I don't have any info on any books about relationships and vestibulitis, but I

do have an article I'll resend. It's Christin Veasley's story. She

is a director of the NVA. http://www.nva.org -- The article shares

the difficulty she and her boyfriend had when getting married and dealing with

vestibulitis/vestibulodynia.

Also, check out our files or links on the homepage, I'm pretty sure Dee (the

owner) recently included some info on some stats.

Hang in there, Chelle

veronica_sheila wrote:

Does anyone know if there are any good books or websites out

there that give advice to boyfriends and husbands about how to deal with their

partner having vestibulitis?