Missed Diagnosis for 16 YEARS....Localized Vestibulitis

[Guest guest]

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 http://www.libbyedwardsmd.com

[Guest guest]

Good goin Chelle! One question though: why do you have to get

the lidocaine compounded when you can get 5% ointment even

without a script from canadiandrugs.com?

I really hope the injections heal you. I admire your

perseverance, but geez what a drag all those other docs

apparently missed this important piece of your diagnosis--kinda

encouraging and discouraging all at the same time.

Janet

[Guest guest]

<< 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

[Guest guest]

Isn't vestibulitis just pain on the inside as opposed to vulvodynia being pain on the outside?

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

http://www.libbyedw ardsmd.com

You rock. That's why Blockbuster's offering you one month of Blockbuster Total Access, No Cost.

[Guest guest]

no its on the vestibule outside of the vagina not in it

>

> Isn't vestibulitis just pain on the inside as opposed to vulvodynia

being pain on the outside?

>

>

> 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

>

> http://www.libbyedw ardsmd.com

>

>

>

>

>

>

______________________________________________________________________

______________

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>

[Guest guest]

molly ring wrote: >>>>>Isn't vestibulitis just pain on the inside as opposed to vulvodynia being pain on the outside?Hey Molly, vestibulitis is pain in the vestibule. Whereas generalized vulvodynia can be anywhere on the vulva, both being external. Hugs, Chelle

[Guest guest]

OK, I guess I knew that, thanks,

love, Molly

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

molly ring <mering00 (AT) yahoo (DOT) com> wrote:

>>>>>Isn't vestibulitis just pain on the inside as opposed to vulvodynia being pain on the outside?Hey Molly, vestibulitis is pain in the vestibule. Whereas generalized vulvodynia can be anywhere on the vulva, both being external. Hugs, Chelle

You rock. That's why Blockbuster's offering you one month of Blockbuster Total Access, No Cost.

[Guest guest]

The vestibule 'rims' around the vagina at the entrance (a little in, a little out) technically the space between the labia minora into which the urethra and vagina open.

Just as a church may have a vestibule (the entrance to the church) and by the way if you ever tell a doctor that you have that, and he asks about your ear?

Yes there's a vestibule in your ear too. Dee

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> > http://www.libbyedw ardsmd.com> > > > > > ____________________________________________________________________________________> You rock. That's why Blockbuster's offering you one month of Blockbuster Total Access, No Cost. > http://tc.deals.yahoo.com/tc/blockbuster/text5.com>------------------------------------**IF REPLYING TO THIS POST, PLEASE REMOVE ORIGINAL POST, Thanks for your cooperation! *****

[Guest guest]

Vestibulitis aka vestibulodynia also occurs on the outside for

some women. It is also a subcategory of vulvodynia.

Kristy

__________________________________________________

[Guest guest]

Chelle,

It took 7 years (and 3 doctors) to diagnose vestibulitis for me. My

first doc said that I had vaginimus. The next one didn't find

anything wrong. It was my midwife that listened and did the q-tip

test on the vestibules. That was where the pain was. I also have

atrophy in my perineum now, but I'm working on that after seeing

Rhonda Monday. I don't know about the steriod shots. I tried the

steriod cream and it didn't do anything for me. Underware was my

demon. It caused all of my nerve issues. I know that is probably

not yours since you still have pain, but yes there are those of us

with localized pain to just the vestibules.

in IL

>

> 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

>

> http://www.libbyedwardsmd.com

>