For Dee

[Guest guest]

Wonderful story Dee (not so wonderful, but you know what I

mean). I am so glad you are well now, but certainly not without you own perseverance.

And now you are well, and I hope your story shows others that they too can get

well, and have happy loving relationships. There is love out there for everyone

– it just takes a little looking. And some of the posts recently show

this, that not all men just think about is sex. There are men out there that

are lonely and are looking for the right partner. Vaginal sex isn’t

everything – yes it means a lot in a relationship, but it is possible to

have a loving relationship without it – there are other ways. And I found

it interesting the stories about young men that have ED or stomach problems or

diabetes. There are men who have medical problems that they are too afraid to

mention because they think it will spoil a relationship. But don’t give

up looking for that right partner, nor give up looking for the right treatment

for yourself. Dee has proven that you can get well, everyone just has to find

the right combination of treatments.

nne

From:

VulvarDisorders [mailto:VulvarDisorders ] On

Behalf Of Dee Troll

Sent: Monday, May 05, 2008 5:33 AM

To: VulvarDisorders

Subject: Re: For Dee

Dee

– every time I read your story, I realize what a strong woman you are and

what it must have been like for you those ten years. But I have a question for

you, now that you are completely well. Did you have Vulvodynia, Vestibulitis,

or LS – or a combination of all of them? Did you do all of your healing

on your own, or did you go to a doctor? It is just so amazing when your tissues

were in such bad shape, and how you did it just by using the two creams. Do you

know any reason why it started in the beginning – like maybe a yeast

infection, etc., or was it something else that caused your tissues to become so

raw and inflamed? It has such a happy ending and gives everyone else such hope

that they can be cured also.

nne

awwhh

HI nne, thank you hon that was so kind of you. To

be honest with you I'm no stronger than anyone else here and look at what

you and so many others have endured too and we somehow just deal with it... but

I know it's part of why these groups can be so wonderful and why I still do it

(over 10 yrs now) because I know what is to suffer and I only hope and pray

something someone says has helped them, can also help others but I think

it's the 'support' too is just as important.

To answer a few of your questions,

OH oh I feel a long one coming so hold onto your seats.

*smile*

During my worst times there weren't these types of groups

and I had no support at all either, (I was too embarassed to tell a soul) so I

had to do something on my own. That's when I got my computer and went

absolutely crazy with research determined to find an answer.

Over the years and going to many many doctors (at

least a dozen) including the Cleveland Clinic I've had all of those

various diagosisis, vulvodynia, vestibulitis, yeast infect, chronic

inflammation, idiopathic of course, etc. etc.etc. and that's why

I finally gave up looking for a specific term or a name for whatever it

was.

I was sure it was some rare disease than no one in the world

heard of. I even had two different doctors in one day give me two

different ones. *sigh* (worse were those who insinuated it's in your head!)

arghhhh That game I never fell for. DUH I knew absolutely it

wasn't.. I was one who loved and thoroughly enjoyed my sexuality previously..

as one told me painless sex starts in the head. THE IDIOT...or to use more lube

as if I was stupid. sigh*

In the end they say it was LS (lichen

sclerosis) as by then the tissue had turned that ugly gray white look

and the labial lips and clitoral hood had fused with adhesions,

so there was no doubt that's what it ended up being esp. when I saw

photos of it myself I knew it was as well. I had 3 biopsy's

that were never conclusive but not read by a dermopatholgist either (and they're

specialists) and after that I absolutely refused anymore. So who knows what it

may have started out to be or if it was that all along because the biopsy's

aren't always a firm conclusion with that either or maybe the extreme damage

the steroids did triggered it? I truly don't know.

But I did know 'for me' the problem was with the

V. skin and it wasn't from a radiating source as I see some others

are. It was that extreme burning like squatting over a blow

torch. The skin was damaged and getting worse with the cuts, splits,

fissures, tears, rips etc. and I could 'see' it visibly esp.

with a strong magnifying glass & mirror & flashlight. I could put my

finger on my exact pain, but then the doctors sure didn't see it with a

cursory glance till I made one of them really look close with his

colposcope.. *sigh* ''OH Yeah'' he says. *grrrrrrr Later years of

course it was obvious with the damage.

That's when I did so much research on genital tissue

healing itself (and what feeds & keeps the tissue healthy and

nourished) and found out about the tremendous benefits of the estrogen

'estradiol and testosterone'. We call that (E & T) for our

'new' members, there was nothing else in all the medical literature that

came close to feeding and nourishing our genital skin. Nothing... others may

have been surface relief but that was temporary and not really feeding the skin

with what it needs from the body.

And the E & T isn't just for LS at all, but for any

pain with vulvar tissue. Once all infectious disease are ruled out of course

and it is skin damage. In other words it's ''the tissue that's the

issue''.

So it didn't matter if it was vestibulitis (as in Dr.

Willems paper) or vulvodynia or LS, those two meds would work to

get the skin healthy, if it's more than that, of course other

treatments are suggested. But no, it sure wasn't any

doctor that told me what to do. (I can guarantee you that) *smile* I had to

fight with them tooth and nail to get it. Today more and more are

using them.. TG, or at least the estrogen part of it but it's just (in my

opinion) they don't understand how valuable the T is 'yet' and how they work

scientifically so beautifully together in sync.

For me what was most detrimental was when they had me

overuse and abuse the steroid meds (topically) as most physicians and

dermatologists will usually give that out for any dermatological problem

as a starting place to slow down inflammation. (My major complaint) It's

fairly common and not a bad idea initially as a starting place IF a mild

or lower strength steroid is used correctly as it will work even for

a general 'dermatitis' as well. It's the abuse and overuse that can be so

detrimental, let alone the most powerful Class ones. And being human

it's so easy for any of us to think if a little is good, 'more' is better

and it NEVER is with a steroid even the lower strength ones, but they can be

very benefical too.

I really have no idea of what might have started it and as

you can imagine over the years of being here that many will suggest it started

with this or that, especially if it happens to coincide with another

health problem they also have and are certain ''that' is the tie

in.

I've seen some theories that to me make no sense to

me and others that might be feasible, and I honestly don't believe there

is one overall theme since we are all so different, I would rather doubt

it.

For instance there are those that have a lot of pelvic floor

problems connected to V pain.(or what they call radiating pain, and not from

it's original source') It means

that anytime there has been an injury to the pudendal nerve, that nerve is

vulnerable and becomes vulnerable to alterations in nerve transmission that

reaches to the vulvar area and often that's where the PT's like Tom

here on the group and other great names mentioned can offer such

benefits... or those like you where surgery, or injections may be the

answer.

There are those with 10-30 X's the normal Mast

cells with histamine or inflammatory cytokine output, and that may be

genetic. There are those with dietary issues that might be a cause and

changing it can turn things around. Many may have IC or endometriosis,

There are those who swear it was antibiotics that did it. There's Vaginismus

where the vaginal muscles are too tight and biofeedback can help with that...

There are those with hysterectomy's where internal organs

can fall out of place just with gravity and time. (let alone the loss of E

& T with that)

I thought at one time I could see 'triggers'

w. childbirth, (Whew did that pain feel similiar)... another I read

about was the treatment for HPV with those horrible acids they use, makes

logical sense too with how they can damage surrounding tissue.

Another might be a very large partner and not enough elasticity in the skin,..

others suggested are the monkey bar, tailbone falls, bicycle

falls, called straddle injuries.. Some suspect overuse with local yeast

medications with chemical burns, others claim diets as I've mentioned.

So who really knows? But they do suspect trauma of

some sort as one of the 'main' triggers, (not all but a main one)

even those who may have certain genes (as some physicians

suggest) trauma can set it off.

Others may even be the birth control pills as they're

finding out more and more about how they 'block' the needed E & T

'receptors' with the progestins in them causing damage. That was a

fascinating find for me to realize how using the T... can bring those back

by the way and even proved to 'me' why when I finally did add the T to my

earlier E regimen alone, it took me over that edge to full &

complete wellness but again 'my' pain was strictly a skin issue and it had

nothing to do with hormonal blood levels (why age doesn't matter with using the

E & T) ... it was damaged 'receptors' and it's the receptors that are

the active working part of a cell.

Early years I was focused on why or what and the cause or

etiology, but I gave up on that too. I just wanted to get well

I didn't care why it happened, and for 'me' it was that use of both the E &

T hormone creams used topically that totally rebuilt and restored my V

tissue. They gave me back my elasticity, my tone, color, stretchability and I

was back to normal finally after those 10 years of a nightmare. It's hard

to believe it's been 9 yrs of being well now but it is. *smile*

It wasn't quick (took me six months of very slow usage) so

no doubt about that but it worked. And as long as I use them now once

or so a week as a maintenance, they keep me well. *grin* I sort of

look at it like adding a moisturizer to my face, and it takes all of

15 seconds to do before sleep and no biggie.

Well here I am motormouthing again, and that's a short

version *chuckle* for what its worth (and no doubt I forgot a few others

as possible reasons) but you all must be saints to have stuck with

this tome.

Big hugs hon and how I hope and pray that one day you and I know some others

here are in such a bad condition as well, can turn things totally around and

you will never give up that seeking, there is an answer out there! I

know you won't.

Luv ya

Dee~