Kay/ Missed Diagnosis for 16 YEARS....Localized Vestibulitis

[Guest guest]

Kay, from someone who has pain in the whole area, touched or

untouched, I totally agree with you. I have several areas that are worse than

others, but in general, all the names, whatever they want to call it, I have

it,

nne

From:

VulvarDisorders [mailto:VulvarDisorders ] On

Behalf Of mrswoodwoose

Sent: Tuesday, April 08, 2008 3:27 PM

To: VulvarDisorders

Subject: Re: Missed Diagnosis for 16 YEARS....Localized

Vestibulitis

<< I have one area of v.pain that still has not completely healed.

She said it is 'localized vestibulitis'! Imagine my shock when I've

been to docs for yrs. now trying to treat the vulvodynia. I've hurt

in that area since day ONE of my pain (March 1992). I also have

vulvodynia...but hearing that I actually have vestibulitis and that

NOT one of those ignorant docs (especially gyns and ob/gyns) caught it

- has ticked me off! I will be soon writing MANY letters to the docs

and the administration above them! >.

Hello, I may be misunderstanding you, but quoting from the ISSVD

patient information leaflet off their website, vulvodynia can be

generalised or localized: " Localized vulvodynia is pain that is caused

by something touching a localized area of the vulva. This is most

commonly the vestibule and so it may be called vestibulodynia " . As I

see it, vestibulodynia (was called vestibulitis) is also vulvodynia,

so it's not that much of a misdiagnosis.

Also, in my experience, many women start with one of them and it can

progress to the other, or they have a combination of the two. Doctors

used to teat them differently, but, apart from surgery (which I think

is only suitable with very localized pain)the treatment options may or

may not help whether one has localized or generalised vulval pain.

[sometimes we refer to these as provoked or unprovoked vulvodynia. ]

I sometimes think that it's not all that necessary to make this

distinction and that it may well be somewhat academic - when you read

what they sometimes write as symptoms for the one it may was well

apply to the other. Doctors used to say that A-D's won't help those

with vestibulodynia, but I know women who do benefit from A-D's. Or

they say that Lidocaine is only helpful with vestibulodynia but women

with unprovoked pain can and may also benefit.

I am more and more just thinking that vulval pain is vulval pain and

it's so individual that one cannot make sweeping rules for provoked or

unprovoked pain.

Just my tuppence worth,

Kay