For Dee

[Guest guest]

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

From: VulvarDisorders

[mailto:VulvarDisorders ] On Behalf Of Dee Troll

Sent: Sunday, May 04, 2008 2:58 AM

To: VulvarDisorders

Subject: Re: dating????

<Is anyone on here single?>

No hon you're not alone there.... believe me lots of the

members are single. *smile* and no doubt struggle with the same situation.

*sigh*

I was single when I was at the absolute

worse and it was horrible and I understand exactly what you mean...

plus had a fantastic sex life previously so I sure knew what I was missing.

Nothing could have been worse for me as I thought for sure someone cursed me.

*chuckle* Not really, but if they did nothing could have been worse

for me. *sigh

I suffered horrible pain for 10 yrs and the last 3

yrs of total celibacy hon.. because the pain was so bad, I even broke

off a nice relationship I had because I felt so sorry for him... I

really did and he couldn't have been kinder but that's how " I "

felt. It was a nice one but not 'the' one either if you know what I

mean..

I didn't want to even look at a man for fear he might ask me

out on a date. I started dressing down and frumpy and the whole nine

yards. Not going around smiling which is my nature but a frown on my

face... Don't 'look at me' sorta thing.

And that was not me, but I also was so afraid to even tell

my best friend thinking OMG if word got around everyone would think I had some

horrible sexual disease and being single, I thought... ''I'll be an old

maid for the rest of my life''. sob sob.. People I worked with

wondered why I wasn't dating or some probably thought I was lesbian

(nothing against it but I'm not) It was terrible, and with the pain and

all, eventually the libido itself gets totally shut off like a

spigot gets turned off.

The good thing tho with no one in my life I was able to

focus only on me and was determined to get well without having to worry or be

concerned about someone else.

Eventually though as I was able to finally heal

that tissue (and I was a real mess) by using two hormone creams,

(estradiol & testosterone) to totally rebuild that tissue, I

found when I finally did start dating again and at that 'stage' (I wouldn't

bring it up too soon) it was easy to just say ''I've a ''skin condition'' and

it happens to be 'there''... it's nothing contagious!! (Immediately that

gets said before they run) LOL ''and I've been working diligently on it

and I am getting better'', (believe me there was no doubt about that part of it

at the time..

And I'd say ''there may be times when I can't perform and

others when I'm ok but it's just something you'll have to understand.'' I

can tell you I never had anyone run away, most wanted to know all about it,

*smile* and things worked out for me but like I said by then I was 99%

better too. Before that I just 'knew' I could not afford to get

anything even started (or that's how " I " felt about it anyway)... and

I know others will say if a guys loves you he'll stick by... and of course

that's true but I'm talking about when no one is in your life and starting

fresh or do you even start a relationship, I know how hard that is..

But ....I got -re-married two years ago after those 10 yrs

of hell and believe me the loving is fantastic and as good as

ever. *wink* So have hope hon whatever you do and maybe right

now is the time to focus on 'you' getting well.... but believe me indeed

there's hope.

Big hugs

Dee

[Guest guest]

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~