Indroduction to the Group

November 5, 2001

Hello All,

I am writing to introduce myself to the group. About two years ago, I

was diagnosed with lichen chronicus simplex...which my gyn doc now just

calls vulvitis. I'm trying to get all the categories clear. I've

recently identified a doctor who specializes in vulvar disorders. I'm

hoping that she will help me out. Honestly, I'm not confident of the

diagnosis because my vulva is extremely scarred and my clitoris no

longer has any distinction left. Any advice sorting out the diagnois?

The really frank question I'd like to ask the group is whether my sex

life is over. I'm a 39 single woman who has been celibate. I always

expected that I would enjoy a sex life, and I feel very deep regret that

I've lost something or worse yet have I brought it on myself. The " use

if ot lose it " idea? Does an atrophied clitoris mean less

responsiveness compared to other women? And what will intercourse be

like with this condition? Concerns about being " defective " have nearly

killed my sex drive. I've tried to ask my gynecologist these questions,

but they dodge the question--out of embarrassment or worse I fear

because the answer is not a good one. Can anyone give me any advice

here? I'd appreciate your candor.

November 5, 2001

, hello and welcome. We're sorry you have to be

here, but glad you have found the right place. I

can't answer most of your questions, because my vulvar

problems are different than yours (I have vestibulitis

- VVS - and dysesthetic vulvodynia - DV). But I do

have a couple of things to say, and I'll let the women

who are familiar with your particular condition help

you out more on those specific issues. First, PLEASE

do not blame yourself in any way!! You didn't bring

this on yourself, and by not " using it, " did not cause

your condition. I think most of us go through a phase

of wondering whether we have somehow caused our own

problem, but it ain't so. You have a medical problem.

Period. Full Stop. Not brought about by anything

you did or didn't do.

Second, as for the satisfying sex life, you've kinda

touched on one of my favorite discussion topics.

Although I can't comment about what it will mean

regarding an atrophied clitoris, I want to strongly

urge you to think positively about sex, and think

about all the myriad ways we can be passionate,

sensual, sensuous, and sexy. I think we need to say

it, over and over, that women with vulvar problems can

have a satisfying sex life. It may mean you/us have

to rethink what the definition of " normal " sex is, but

there are ways to enjoy our sexuality, and dang, it's

important for our mental health to enjoy it! I know

that some of us are sometimes in too much pain to even

think about sex, in which case I would urge us not to

give up on the healing power of the human touch, at

least. But for those who feel up to and want a sexual

experience, it's out there. I'm forever ranting about

one book or another, such as the Guide to Getting It

On! (a humorous and in-depth how-to approach to all

kinds of sex, not just intercourse), and Accupressure

for Lovers (a great book for learning sensual massage

techniques that aren't necessarily geared toward

intercourse or even orgasm - it really focuses on

intimacy and sensuality). So please, please, ask

away, and perhaps when others here can address some of

your specific physical concerns, I can come up with

some more ideas for you.

I'm glad you've found a vulvar specialist, since I

think the vast majority of gyns are not equipped to

deal with vulvar problems. I hope the doctor is a

she? I say that because my doctor is a woman, and I

feel so much more comfortable discussing intimate

matters with her. I just had a conversation with her

last week about the ways in which vulvodynia had

actually improved the sexual intimacy in my life (I'm

married) by allowing us to slow down, not be

goal-oriented, and just be more playful. Even if you

can't find a trusted woman doctor, you can depend on

us to be candid with the knowledge we have. That's

what I love about this group. I can ask any question,

and women who have some knowledge are gracious enough

to share it.

Well, I have run on now, haven't I? Please keep in

touch!

Suzy

--- ellen Madaio wrote:

> Hello All,

>

> I am writing to introduce myself to the group.

> About two years ago, I

> was diagnosed with lichen chronicus simplex...which

> my gyn doc now just

> calls vulvitis. I'm trying to get all the

> categories clear. I've

> recently identified a doctor who specializes in

> vulvar disorders. I'm

> hoping that she will help me out. Honestly, I'm not

> confident of the

> diagnosis because my vulva is extremely scarred and

> my clitoris no

> longer has any distinction left. Any advice sorting

> out the diagnois?

>

> The really frank question I'd like to ask the group

> is whether my sex

> life is over. I'm a 39 single woman who has been

> celibate. I always

> expected that I would enjoy a sex life, and I feel

> very deep regret that

> I've lost something or worse yet have I brought it

> on myself. The " use

> if ot lose it " idea? Does an atrophied clitoris

> mean less

> responsiveness compared to other women? And what

> will intercourse be

> like with this condition? Concerns about being

> " defective " have nearly

> killed my sex drive. I've tried to ask my

> gynecologist these questions,

> but they dodge the question--out of embarrassment or

> worse I fear

> because the answer is not a good one. Can anyone

> give me any advice

> here? I'd appreciate your candor.

>

__________________________________________________

November 5, 2001

Hi Jerri,

Thank you for understanding. Was it cancer or vulvar pain that

led you to have the vulvectomy? Forgive my ignorance, but why can't

they do anthing about the pain? I'm so sorry for what I can imagine

is very difficult.

jerri wrote:

,

I understand how you feel. I have had a radical vulvectomy and I

feel like my whole genital area is deformed and scarred. I no longer

have a clitoris. Given all that I have lost, I know that there is

no way that I will ever be able to have a sex life again. I am embarrassed

when I go to a gyn dr. I can understand your reluctance to ask any

questions. I wish I could answer your questions, but all I can do

is tell you that I understand. The thing that makes me mad is that

my dr. told me that the surgery was the only answer to the pain problem,

and I am still in pain with no hope of relief. I hope you find the

answers you are looking for. Jerri

-- Indroduction

to the Group

Hello All,

I am writing to introduce myself to the group. About two years ago,

I

was diagnosed with lichen chronicus simplex...which my gyn doc now

just

calls vulvitis. I'm trying to get all the categories clear. I've

recently identified a doctor who specializes in vulvar disorders. I'm

hoping that she will help me out. Honestly, I'm not confident of the

diagnosis because my vulva is extremely scarred and my clitoris no

longer has any distinction left. Any advice sorting out the diagnois?

The really frank question I'd like to ask the group is whether my sex

life is over. I'm a 39 single woman who has been celibate. I always

expected that I would enjoy a sex life, and I feel very deep regret

that

I've lost something or worse yet have I brought it on myself. The "use

if ot lose it" idea? Does an atrophied clitoris mean less

responsiveness compared to other women? And what will intercourse be

like with this condition? Concerns about being "defective" have nearly

killed my sex drive. I've tried to ask my gynecologist these questions,

but they dodge the question--out of embarrassment or worse I fear

because the answer is not a good one. Can anyone give me any advice

here? I'd appreciate your candor.

November 5, 2001

, I understand how you feel. I have had a radical vulvectomy and I feel like my whole genital area is deformed and scarred. I no longer have a clitoris. Given all that I have lost, I know that there is no way that I will ever be able to have a sex life again. I am embarrassed when I go to a gyn dr. I can understand your reluctance to ask any questions. I wish I could answer your questions, but all I can do is tell you that I understand. The thing that makes me mad is that my dr. told me that the surgery was the only answer to the pain problem, and I am still in pain with no hope of relief. I hope you find the answers you are looking for. Jerri

-- Indroduction to the Group

Hello All,I am writing to introduce myself to the group. About two years ago, Iwas diagnosed with lichen chronicus simplex...which my gyn doc now justcalls vulvitis. I'm trying to get all the categories clear. I'verecently identified a doctor who specializes in vulvar disorders. I'mhoping that she will help me out. Honestly, I'm not confident of thediagnosis because my vulva is extremely scarred and my clitoris nolonger has any distinction left. Any advice sorting out the diagnois?The really frank question I'd like to ask the group is whether my sexlife is over. I'm a 39 single woman who has been celibate. I alwaysexpected that I would enjoy a sex life, and I feel very deep regret thatI've lost something or worse yet have I brought it on myself. The "useif ot lose it" idea? Does an atrophied clitoris mean lessresponsiveness compared to other women? And what will intercourse belike with this condition? Concerns about being "defective" have nearlykilled my sex drive. I've tried to ask my gynecologist these questions,but they dodge the question--out of embarrassment or worse I fearbecause the answer is not a good one. Can anyone give me any advicehere? I'd appreciate your candor.

November 6, 2001

, I had intense vulva pain. I went to 2 different specialists. The first one said the pain was caused by the normal vulva tissue and there was nothing he could do. He recommended me to a supposedly well known and highly recognized pelvic pain specialist. He said that the pain was caused by the scar tissue from the 3 vulvectomy surgeries and that further surgery would only create further scar tissue which would create more pain. I find it hard to believe that 2 specialists at major medical university hospitals would give me exact opposite reasons for my pain. It just makes me wonder if any of them really know what they are doing or talking about. I am now seeing a female PT who specializes in vulva pain. I haven't gotten any relief yet, but she is at least trying everything that she knows hoping to find some coping skills that might help with the pain. Jerri

-- Indroduction to the Group Hello All, I am writing to introduce myself to the group. About two years ago, I was diagnosed with lichen chronicus simplex...which my gyn doc now just calls vulvitis. I'm trying to get all the categories clear. I've recently identified a doctor who specializes in vulvar disorders. I'm hoping that she will help me out. Honestly, I'm not confident of the diagnosis because my vulva is extremely scarred and my clitoris no longer has any distinction left. Any advice sorting out the diagnois? The really frank question I'd like to ask the group is whether my sex life is over. I'm a 39 single woman who has been celibate. I always expected that I would enjoy a sex life, and I feel very deep regret that I've lost something or worse yet have I brought it on myself. The "use if ot lose it" idea? Does an atrophied clitoris mean less responsiveness compared to other women? And what will intercourse be like with this condition? Concerns about being "defective" have nearly killed my sex drive. I've tried to ask my gynecologist these questions, but they dodge the question--out of embarrassment or worse I fear because the answer is not a good one. Can anyone give me any advice here? I'd appreciate your candor.

November 6, 2001

>

> Message: 6

> Date: Mon, 05 Nov 2001 13:59:50 -0400

>

> Subject: Indroduction to the Group

>

> Hello All,

>

> I am writing to introduce myself to the group. About two years ago, I

> was diagnosed with lichen chronicus simplex...which my gyn doc now just

> calls vulvitis. I'm trying to get all the categories clear. I've

> recently identified a doctor who specializes in vulvar disorders. I'm

> hoping that she will help me out. Honestly, I'm not confident of the

> diagnosis because my vulva is extremely scarred and my clitoris no

> longer has any distinction left. Any advice sorting out the diagnois?

>

Hi , welcome to the list. No, your sex life is not over. I think all the

members of this group are able to have a sex life, perhaps not a perfect

one, but nevertheless.

Please, please, don't believe anyone who says that you brought this on

yourself.

It is hard enough to live with this condition without this guilt. You did

not cause it in any way shape or form. It is just something that has

happened. Certainly not for lack of " using it " . For example, I have severe

VV and I've had it for 8 years. When it began I had been with my husband

for, I don't know, 14 years maybe? Having sex several times a week.

There's lots of misinformation around and you eventually learn to sort out

the truth from the BS. But you definitely did not cause it by being

celibate.

Warmly,

> The really frank question I'd like to ask the group is whether my sex

> life is over. I'm a 39 single woman who has been celibate. I always

> expected that I would enjoy a sex life, and I feel very deep regret that

> I've lost something or worse yet have I brought it on myself. The " use

> if ot lose it " idea? Does an atrophied clitoris mean less

> responsiveness compared to other women? And what will intercourse be

> like with this condition? Concerns about being " defective " have nearly

> killed my sex drive. I've tried to ask my gynecologist these questions,

> but they dodge the question--out of embarrassment or worse I fear

> because the answer is not a good one. Can anyone give me any advice

> here? I'd appreciate your candor.

>

November 6, 2001

Hi Arlene,

Wow, did I understand you to say the tissue is restored? Why hasn't anyone

suggested cremes to me? Are there any side affects I should be aware of? I see

a vulvar specialist in January. Do you think there would

be any harm in starting non-perscription cremes now or should I wait? Is there

a point where one might give up the cremes? Does the condition fully heal?

I got tested for food sensitivities by a naturpath. I gave up a some foods and

cut back on others. I'm sensitive to corn, soy, almonds, peanuts, dairy,

yeast...lots of stuff....I know it would be wise to be more

rigorous...but eliminating foods makes me crazy, since I have a past history of

disordered eating. Giving up sugar is the biggie for me, which would be prudent

if this is a yeast thing. How was the experience for

you? Was it tough?

Can you fill me in on oxalate? When my condition is at its worse I suffer a bit

of urine loss, which I'm sure aggravates my skin. Did you have that problem?

Would the cremes help with that? I have been using

steroid cream, which I think irritates my skins most of the time. I've had

better luck using Gold Bond itching creme.

Thanks so much for your encouragement. I hope you're OK with all my questions!

Best,

grandy grandy wrote:

> ,

>

> I would be willing to bet that your sex life is not over. Testosterone and

> Estrace creams have restored clitoral, labial parts, etc. to new

> condition--maybe better than new--not to mention the restoration of libido.

> People seem to find various ways of healing. I found my healing with diet

> change and then used the creams to restore the fusion, atrophy, and other

> damage. Don't give up.

>

> I personally think that cultures should be taken and any other studies you

> can discover to see if there is anything like too much yeast, too much

> lactobacillis, other abnormalities. Just a diagnosis of Lichen Sclerosis

> even with myself made me suspicious when there was no other study. Sometimes

> we are given a diagnosis and then sent away to survive and told to live with

> it. Personally I think my LS was caused by food sensitivities that

> manifested themselves partly by causing yeast infections which inflamed and

> damaged the vulvar skin creating extreme sensitivity to yeast (including

> yeast foods).

>

> Hang in there.

>

> Best Wishes,

>

> Arline

>

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November 6, 2001

,

I would be willing to bet that your sex life is not over. Testosterone and

Estrace creams have restored clitoral, labial parts, etc. to new

condition--maybe better than new--not to mention the restoration of libido.

People seem to find various ways of healing. I found my healing with diet

change and then used the creams to restore the fusion, atrophy, and other

damage. Don't give up.

I personally think that cultures should be taken and any other studies you

can discover to see if there is anything like too much yeast, too much

lactobacillis, other abnormalities. Just a diagnosis of Lichen Sclerosis

even with myself made me suspicious when there was no other study. Sometimes

we are given a diagnosis and then sent away to survive and told to live with

it. Personally I think my LS was caused by food sensitivities that

manifested themselves partly by causing yeast infections which inflamed and

damaged the vulvar skin creating extreme sensitivity to yeast (including

yeast foods).

Hang in there.

Best Wishes,

Arline

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp

November 6, 2001

Hi Jerri,

Thanks for filling me in. I'm glad that you have found a practitioner

that you have faith in. If you haven't already you might look into

alternatives therapies, like acupuncture, hypnotherapy, and meditation

to better manage the pain. I've never managed chronic pain, (only

itching) so I can't speak from experience but I've read some compelling

success stories. Please keep your chin up, and know that I empathize.

Best,

P.S. I'd love to know how you send such pretty e-mail!

jerri wrote:

,

I had intense vulva pain. I went to 2 different specialists.

The first one said the pain was caused by the normal vulva tissue and there

was nothing he could do. He recommended me to a supposedly well known

and highly recognized pelvic pain specialist. He said that the pain

was caused by the scar tissue from the 3 vulvectomy surgeries and that

further surgery would only create further scar tissue which would create

more pain. I find it hard to believe that 2 specialists at major

medical university hospitals would give me exact opposite reasons for my

pain. It just makes me wonder if any of them really know what they

are doing or talking about. I am now seeing a female PT who specializes

in vulva pain. I haven't gotten any relief yet, but she is at least

trying everything that she knows hoping to find some coping skills that

might help with the pain. Jerri