New to group and vulvadynia....

[Guest guest]

Have you tried a small pea sized amount of Estrace on the area

that tears? I have been using Clobetasol (steroid) for the last two years for

LS. I now only have to use it once a week or ten days, but originally I used it

every day. The Estrace toughens the skin so it doesn’t tear from the

steroid. I have had great success with this treatment.

nne

From:

VulvarDisorders [mailto:VulvarDisorders ] On

Behalf Of pam ayers

Sent: Tuesday, July 08, 2008 7:32 PM

To: VulvarDisorders

Subject: Re: New to group and vulvadynia....

Hi dotbus123

I am 59 and have been suffering from iching, burning and pain during

intercourse in addition to my husband not able to penetrate. I was diagnosed

with Lichen Planus about 4 years ago and that cleared up with steroid

treatment. I wish I could find a treatment that doesn't require steroids as it

has thinned the skin so much when I do have sex the skin tears. My diagnosis

now is vulvadynia with vaginismus. This helps cover pretty much all of my

complaints. It's quite frustrating to not know what's wrong but it is

reassuring to know I'm not the only one out there with something different.

Good luck

Reply-To: VulvarDisorders

To: VulvarDisorders

Subject: Re: New to group and vulvadynia....

Date: Sun, 6 Jul 2008 20:09:11 -0700 (PDT)

sorry to hear about your pain...you are not alone. I can most

definatley relate to your pain and frustration. Have you done any

research on lichen planus or lichen sclerosis? The info thats out there

is a bit scary especially the pictures, but unfortunalty you have to take

charge of your health b/c many docs dont have a clue. I was diagnosed

with Lichen planus a little over a year ago and am happy to say I feel cured!

(there is none)

If i were you I would stay away from any invasive procedures and treatment

plans like steroids (topical and or oral) and try the most concervative

options. Does cold ice compacts help with your pain relief...it did wonders

for me.

Stay positive ( I know its hard) and dont give up.

Good luck and feel free to email me direct.

/ Florida

Subject: New to group and vulvadynia....

To: VulvarDisorders

Date: Sunday, July 6, 2008, 9:08 PM

I am a sixty year old women who has been

experience vulva pain for

about 2 months now. I can't sit at all without having extreme

sensitivty and burning (it doesn't help that my job requires me to sit

most of the day). Most days I am in tears by noon. I have seen my gyn

three times who after having no answers sent me to a dermotologist who

had no answers who sent me to a urologist who had no answers (with a

total of 4 biopsies). Needless to say I was beyond myself until I

started doing research on my own and discovered there is a whole

community of women who have the same problem.

My question is that I finally found a vulva/viagna specialist in NYC

who will see me in two weeks. What questions should I be asking her

and what should I expect. After reading up on this, it doesn't sound

too hopeful...

I am very thankful for finding this group.

[Guest guest]

thanks I'll give it a try

Reply-To: VulvarDisorders To: <VulvarDisorders >Subject: New to group and vulvadynia....Date: Tue, 08 Jul 2008 20:12:01 -0400

Have you tried a small pea sized amount of Estrace on the area that tears? I have been using Clobetasol (steroid) for the last two years for LS. I now only have to use it once a week or ten days, but originally I used it every day. The Estrace toughens the skin so it doesn’t tear from the steroid. I have had great success with this treatment.

nne

From: VulvarDisorders [mailto:VulvarDisorders ] On Behalf Of pam ayersSent: Tuesday, July 08, 2008 7:32 PMTo: VulvarDisorders Subject: Re: New to group and vulvadynia....

Hi dotbus123

I am 59 and have been suffering from iching, burning and pain during intercourse in addition to my husband not able to penetrate. I was diagnosed with Lichen Planus about 4 years ago and that cleared up with steroid treatment. I wish I could find a treatment that doesn't require steroids as it has thinned the skin so much when I do have sex the skin tears. My diagnosis now is vulvadynia with vaginismus. This helps cover pretty much all of my complaints. It's quite frustrating to not know what's wrong but it is reassuring to know I'm not the only one out there with something different.

Good luck

From: Gerolstein <doll_fin1977 (AT) yahoo (DOT) com>Reply-To: VulvarDisorders To: VulvarDisorders Subject: Re: New to group and vulvadynia....Date: Sun, 6 Jul 2008 20:09:11 -0700 (PDT)

sorry to hear about your pain...you are not alone. I can most definatley relate to your pain and frustration. Have you done any research on lichen planus or lichen sclerosis? The info thats out there is a bit scary especially the pictures, but unfortunalty you have to take charge of your health b/c many docs dont have a clue. I was diagnosed with Lichen planus a little over a year ago and am happy to say I feel cured! (there is none)

If i were you I would stay away from any invasive procedures and treatment plans like steroids (topical and or oral) and try the most concervative options. Does cold ice compacts help with your pain relief...it did wonders for me.

Stay positive ( I know its hard) and dont give up.

Good luck and feel free to email me direct.

/ Florida

From: dotbus123 <dotbus123 (AT) yahoo (DOT) com>Subject: New to group and vulvadynia....To: VulvarDisorders Date: Sunday, July 6, 2008, 9:08 PM

I am a sixty year old women who has been experience vulva pain for about 2 months now. I can't sit at all without having extreme sensitivty and burning (it doesn't help that my job requires me to sit most of the day). Most days I am in tears by noon. I have seen my gyn three times who after having no answers sent me to a dermotologist who had no answers who sent me to a urologist who had no answers (with a total of 4 biopsies). Needless to say I was beyond myself until I started doing research on my own and discovered there is a whole community of women who have the same problem.My question is that I finally found a vulva/viagna specialist in NYC who will see me in two weeks. What questions should I be asking her and what should I expect. After reading up on this, it doesn't sound too hopeful...I am very thankful for finding this group.

[Guest guest]

Pam,

I have LP and I use estradiol compounded in emu oil - keeps me stretchy

and no tearing. Steroids have not been helpful to me. They are not the

only option!

Melinda

[Guest guest]

Hi again, Jan,There actually is 'hope' - though I'm sure at the moment, it may not feel like it! It just seems to take a little time to find the treatment that will work best for you. ;-) As for questions -- track your symptoms over the next few days, if you haven't already so you will have a clear picture of what you want to tell the Dr.Your story of many docs sounds familiar, but don't allow a docs attitude to keep you from pressing forward. Stay determined. I encourage you to go to the homepage (link located at the bottom of this post) and use our Search box. You'll find tons of good info from previous posts. Hang in there,Chelledotbus123 wrote: I am a sixty year old women who has been experience vulva pain for about 2

months now. I can't sit at all without having extreme sensitivty and burning (it doesn't help that my job requires me to sit most of the day). Most days I am in tears by noon. I have seen my gyn three times who after having no answers sent me to a dermotologist who had no answers who sent me to a urologist who had no answers (with a total of 4 biopsies). Needless to say I was beyond myself until I started doing research on my own and discovered there is a whole community of women who have the same problem.My question is that I finally found a vulva/viagna specialist in NYC who will see me in two weeks. What questions should I be asking her and what should I expect. After reading up on this, it doesn't sound too hopeful...I am very thankful for finding this group.