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

April 9, 2008

Chelle – that is exactly what I had yesterday. I will have

another set of injections in three weeks. My pain is better today – how is

yours?

nne

[mailto:VulvarDisorders ] On Behalf Of Chelle

Sent: Tuesday, April 08, 2008 1:54 PM

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

My hubby, kids and I drove to NC and I saw Libby

last Thursday. For those who are new to the group, Libby is a

Dermatologist, and the former President of the ISSVD. 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!

Have any of you been diagnosed with LOCALIZED

vestibulitis? LIbby said there is a chance I could get completely well

from a couple of 'steroid' injections directly in the area. She can also

do a punch excision and 'remove' the skin (not a complete vestibulectomy).

She said I could get completely well, or permanently worse (from excision) -

that option is a last resort, if any for me. I chose to get the

injection -- she said I will not get worse from it. It was a tiny amount of

steroid, but oh how it hurt like heck when injected. It was over quickly,

though -- and I squeezed my hubby's hand and was vocally loud as usual.

Since Nov. I've had two rounds of Pudendal Nerve blocks, one caudal epidural,

two trigger injections in my butt, now a steroid shot in the most painful area

of my vulva...(and a partridge in a pear tree)...

She told me to call them in 3 weeks for an update on the

injection, if it helps significantly like 50 - 75% she said one more injection

could cure it.

In the meantime, I asked for compounded Lidocaine. I'm

gonna try Estrace and Lidocaine on a Cottonball for 6-7 weeks. I'm gonna

do PT on that area like crazy (as much as I can handle anyway).

Hugs, Chelle

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