Re: Doctors Appt.

[Guest guest]

LJR (am afraid to try to reach you gals by using your email address as I so

seldom GET to you..was a bit amused, in a way, as you are the ONLY gal I've

run into in 6 mos on this list..or theother one..whohad a pharmacy mix the RX

the DR. ordered. Back in '95 when I was first beginning to find docs for VV,

I went to our Univ Med college GYN who presctibed Silvadene mixed

withHydrocortisone..it did cool it but I was not instructed to use it so many

xxxs a day but " as needed " . since then, I have heard that cortisone thins the

skin so I don't use it very often; however, nothing else helps..it didn't

either really, but was cooling as I said and i've been pretty desperate

sometimes..MOST of the time actually and have tried about everthing..am on

Marshmallow root caps as of a day or so ago. Tried Tree Oil and sea salt

baths sometime ago and that was NO help. I do use Witch Hazel daubs once in

awhile & spritz with plain water when it burns after urination a lot. Keeping

watch...Good luck! LHend12826@... (Silvadene is a burn ointment)( take

citracal as per Dr, Solmon's antioxylate theory and have for 2 yrs or so..no

great change..it still ebbs & flows)

[Guest guest]

- thank you for the tip on mixing the hydrocortisone with crisco base.

I'll ask my pharamcist about it. It was comforting to hear that your doctor

prescribed the same thing for you...using the hydrocortisone twice a day, pain

or no pain. I was glad it worked for you & hope it will do the same for me.

Did your doctor preform a vulvar biospy? If so, was it painful? No, my

doctor never mentioned surgery. I'm wondering if its a consideration for me

somewhere down the road...if all else fails. What is involved with that

surgery? I, too, would appreciate any information on it.

Thanks, Diane

[Guest guest]

- is lidocaine a prescription? The surgery sounds terrible. Hope I

don't get to that point, but I wish you lots of luck. It may be your cure...I

certainly hope so. Keep us informed. Diane

[Guest guest]

Marie - yes, I would appreciate you sending me the name of the lab in florida.

My doctor said he would do a biospy to check deeper into the tissue. Guess

he's looking for some type of bacteria or something. I've been reading alot

about yeast burrowing in the tissue and it doesn't come up in a culture or

biospy. Also, some resistant strains of yeast. When I go back to him, I plan

on discussing this with him. You can send the address of the lab to my e-mail

address. Thanks so much.

Diane

[Guest guest]

Diane,

My doctor also recommended using the hydrocortisone cream twice daily, pain

or not, as it takes about three weeks for the skin to turn over completely.

It is one of the few things I have found that helps. My doc has a local

pharmacy mix the hydrocortisone cream in a Crisco base, which makes it a

nice protective barrier/emollient also. You may want to look into it.

Also, I have been diagnosed with vestibulitis only, and your description of

the pain with insertion of the speculum and the Q-tip test sounds very

familiar. I am having a vestibulectomy in two weeks and truly hope that it

helps. Did your doc mention this surgery as an eventual option at all? I

would appreciate info and advice from anyone who knows about the surgery.

Good Luck!

At 07:48 PM 11/5/98 -0500, you wrote:

>From: DMDi1@...

>

>Hi everyone,

> I saw my doctor today (gyne) for the first time in over a year. I

>explained everything that was going on....the burning, itching, rawness,

>irritation, painful intercourse & that " splinter " feeling. He did a thorough

>exam. It hurt when he inserted the speculum, he was very apologetic, and I

>described it as a tender, sore feeling, not actually a pain. Yet, the pelvic

>exam wasn't as bad. It seems my soreness & tenderness is only at initial

>pentration of anything & the speculum kind of stayed right where it hurts.

He

>did that q-tip test. He touched all around the vestibule & only one small

>spot was tender at the 6:00 position. My tests came up negative for yeast or

>bacterial infections. That was a surprise. I was sure I had a yeast

>infection. I told him when I use hydrocortisone cream, it seems to settle

>things down, but I only use it when it flares up. He wants me to apply the

>hydrocortisone cream 2 times a day, whether I'm having a problem or not, for

>one month. If the problem continues or comes back after that, he wants me to

>come back for a vulvar biospy. I'm not sure what to think of all of this.

It

>sounds like a true case of VV to me. What do you think?

> Also, I bought calcium citrate. What is the daily dosage? The bottle

says

>2 twice a day. Is that right? I also bought aveeno. How often should I

>bathe in it? I would appreciate anyone's opinion on what my doctor

advises me

>to do. Thanks for all your help.

> Diane

>

>------------------------------------------------------------------------

>

[Guest guest]

Hi Diane, I guess i would want to know why he was doing the biopsy. What does

he think

it is. Most biopsy reports come back " mild inflammation " (tell us something we

don't

know!). There is a lab in Fl that is suppose to specialize in reading biopsy's

and it

might be worth the money (less than $100) to get it read by them. Ask your doc

if he

knows about this lab at the University of Fl. I can send you the address if you

want.

Marie at nickels@...

DMDi1@... wrote:

> From: DMDi1@...

>

> Hi everyone,

> I saw my doctor today (gyne) for the first time in over a year. I

> explained everything that was going on....the burning, itching, rawness,

> irritation, painful intercourse & that " splinter " feeling. He did a thorough

> exam. It hurt when he inserted the speculum, he was very apologetic, and I

> described it as a tender, sore feeling, not actually a pain. Yet, the pelvic

> exam wasn't as bad. It seems my soreness & tenderness is only at initial

> pentration of anything & the speculum kind of stayed right where it hurts. He

> did that q-tip test. He touched all around the vestibule & only one small

> spot was tender at the 6:00 position. My tests came up negative for yeast or

> bacterial infections. That was a surprise. I was sure I had a yeast

> infection. I told him when I use hydrocortisone cream, it seems to settle

> things down, but I only use it when it flares up. He wants me to apply the

> hydrocortisone cream 2 times a day, whether I'm having a problem or not, for

> one month. If the problem continues or comes back after that, he wants me to

> come back for a vulvar biospy. I'm not sure what to think of all of this. It

> sounds like a true case of VV to me. What do you think?

> Also, I bought calcium citrate. What is the daily dosage? The bottle says

> 2 twice a day. Is that right? I also bought aveeno. How often should I

> bathe in it? I would appreciate anyone's opinion on what my doctor advises me

> to do. Thanks for all your help.

> Diane

>

> ------------------------------------------------------------------------

>

[Guest guest]

Diane,

No, I've never had a biopsy. He says that he is postive that it is vulvar

vestibulitis, and I have a lot of confidence in him. He treats patients

from all over the west, and is considered a specialist in pelvic and

perineal pain. When I first started seeing him, about a year ago (its been

every three weeks since then!) he mentioned surgery as an alternative if

nothing else worked (avoiding irritants, using various steroid creams,

lidocaine, etc.) I never thought that I would get to the point where I

would even consider it, but here I am! It is a surgery done under general

anesthetic, and it involves removing about 1 cm of tissue in a horseshoe

shape around the sides and back of the vagina. He performs 2-3 a month,

and says that he has had about a 90% total success rate. I'm really hoping

that it works for me, because it sounds kind of yucky,and the recovery

isn't supposed to be very fun (1 week pretty much in bed, and 4 months of

no intercourse or attempted intercourse, which is all I usually have anyway

) Anyway, I hope some of you out there have more info on this procedure.

My pre-op visit is in a week, and I have a big list of questions to ask.

Whoever sent the address for the arizona doctors page, that was great,

thank you. Good luck, Diane, and all the rest of you!

At 10:08 PM 11/5/98 -0500, you wrote:

>From: DMDi1@...

>

> - thank you for the tip on mixing the hydrocortisone with crisco base.

>I'll ask my pharamcist about it. It was comforting to hear that your doctor

>prescribed the same thing for you...using the hydrocortisone twice a day,

pain

>or no pain. I was glad it worked for you & hope it will do the same for me.

>Did your doctor preform a vulvar biospy? If so, was it painful? No, my

>doctor never mentioned surgery. I'm wondering if its a consideration for me

>somewhere down the road...if all else fails. What is involved with that

>surgery? I, too, would appreciate any information on it.

>Thanks, Diane

>

>------------------------------------------------------------------------

>

[Guest guest]

Hi:

Would everyone who is even considering surgery do me a favor and

themselves?

Please ask these doctors how long they have followed the patients after

surgery? From all I've read, and that's a lot, the consensus seems to be

that, yes, surgery heals some small percentage. But the majority get

good relief for one year to a year and a half and quite often the pain

comes back then. This has been in the newsletters, written by many

women, etc. Please ask the doctors. If they don't know, find one who

does.

Not totally downing surgery, because it *can* help, but too many

" specialists " are using these blanket statements, and I'd like to see the

longer term results.

My $.02

kal

On Thu, 05 Nov 1998 20:37:40 -0700 LJR writes:

>

>

>Diane,

>No, I've never had a biopsy. He says that he is postive that it is

>vulvar

>vestibulitis, and I have a lot of confidence in him. He treats

>patients

>from all over the west, and is considered a specialist in pelvic and

>perineal pain. When I first started seeing him, about a year ago (its

>been

>every three weeks since then!) he mentioned surgery as an alternative

>if

>nothing else worked (avoiding irritants, using various steroid creams,

>lidocaine, etc.) I never thought that I would get to the point where

>I

>would even consider it, but here I am! It is a surgery done under

>general

>anesthetic, and it involves removing about 1 cm of tissue in a

>horseshoe

>shape around the sides and back of the vagina. He performs 2-3 a

>month,

>and says that he has had about a 90% total success rate. I'm really

>hoping

>that it works for me, because it sounds kind of yucky,and the recovery

>isn't supposed to be very fun (1 week pretty much in bed, and 4 months

>of

>no intercourse or attempted intercourse, which is all I usually have

>anyway

>) Anyway, I hope some of you out there have more info on this

>procedure.

> My pre-op visit is in a week, and I have a big list of questions to

>ask.

>Whoever sent the address for the arizona doctors page, that was great,

>thank you. Good luck, Diane, and all the rest of you!

>

>

>

>At 10:08 PM 11/5/98 -0500, you wrote:

>>From: DMDi1@...

>>

>> - thank you for the tip on mixing the hydrocortisone with crisco

>base.

>>I'll ask my pharamcist about it. It was comforting to hear that your

>doctor

>>prescribed the same thing for you...using the hydrocortisone twice a

>day,

>pain

>>or no pain. I was glad it worked for you & hope it will do the same

>for me.

>>Did your doctor preform a vulvar biospy? If so, was it painful? No,

>my

>>doctor never mentioned surgery. I'm wondering if its a consideration

>for me

>>somewhere down the road...if all else fails. What is involved with

>that

>>surgery? I, too, would appreciate any information on it.

>>Thanks, Diane

>>

>>------------------------------------------------------------------------

>>

[Guest guest]

Diane,

Yes, the lidocaine is prescription. Some doctors tell you to use it daily,

mine just said to put some on about 10 minutes before intercourse. Some

peple have good success with it, but I found that it made the burning

worse. You may want to talk to your doc about it because I've heard good

things. About the surgery, I hoped I'd never get to this point either, but

here I am and I don't see any other options. I'll let you know how it goes.

At 10:42 PM 11/5/98 -0500, you wrote:

>From: DMDi1@...

>

> - is lidocaine a prescription? The surgery sounds terrible. Hope I

>don't get to that point, but I wish you lots of luck. It may be your

cure...I

>certainly hope so. Keep us informed. Diane

>

>------------------------------------------------------------------------

>

[Guest guest]

Hi Diane,

I throught I would post this address on the list in case anyone else would want

it. I

had two biospy's done and by bill was $95 (which I didn't think was too bad. My

insurance paid abut 60%). Here is the address:

University of Florida Diagnostic Referral Laboratores

Department of Pathology & Laboratory Medicine

2310 SW 13th Street

Gainesville, FL 32608

If anyone else has ever gotten reports from them now or in the furture, would

you share

the reports with us. This lab is supposenly one of the few labs who specialize

in

uncommon conditions.

Good luck with your biopsy and hope it comes back with only good news! Marie

DMDi1@... wrote:

> From: DMDi1@...

>

> Marie - yes, I would appreciate you sending me the name of the lab in florida.

> My doctor said he would do a biospy to check deeper into the tissue. Guess

> he's looking for some type of bacteria or something. I've been reading alot

> about yeast burrowing in the tissue and it doesn't come up in a culture or

> biospy. Also, some resistant strains of yeast. When I go back to him, I plan

> on discussing this with him. You can send the address of the lab to my e-mail

> address. Thanks so much.

> Diane

>

> ------------------------------------------------------------------------

>