Re: To Dee

[Guest guest]

HI Diane,

Hon over those 10 years of horrible pain I was diagnosed with all the various terms you'll see mentioned from vulvodynia, vestibulitis, to yeast infections (guesses) to who knows? *sigh* that's when I got so darn frustrated with it all. As if the right hand didn't know what the left was doing *sigh* and I could give a rats arse less what they called it, I just wanted to get well. !!

I do think sometimes we get so involved with a name that we tend to put it into one single category and act as if there's only one single treatment for that particular name. *sigh* I also understand the need of wanting a name for a condition but I was just so disgusted by then I didn't care what name they called this 'Rose'. *sigh* It was a Rose with thorns for sure!

I mean sometimes I'd see 2 doctors a few days apart and be given a different diagnoses. I had 3 different biopsies too and none of them ever showed anything specific except severe inflammation, and you just want to scream, as if you didn't know that! *sigh*

My symptoms originally were where it felt like severe paper cuts and I burned something horrible, like one member used to say 'squatting over a blow torch'... It felt as if I had poured acid over myself. All infections were ruled out over and over but I couldn't get any relief at all. I couldn't stand or even sit without pain and it was constant and only got worse where even air or water killed me. (let alone urine or sex) In fact towards the end I did have to be celebate for the last 3 years of those 10 and believe me I loved my sexuality previously.

Believe me the list is as long as my arm with the various treatments I'd tried in those 10 years. I listed them once and there were easily over 30 various things. *sigh* just like many of you have tried no doubt. The only 2 things I refused were the surgery and the use of the antidepressants. But you name anything else and it's likely I tried it. *sigh* tho I was ready to say just cut the dang thing off believe me I was close.

Several (more than a few) doctors 'insisted' I stay on a strong steroid and I only got worse and worse until I ended up with huge blisters on the smaller labial lips... they would swell up to 4 X's their normal size, even back around the anal area and up to my tail bone. But it was with overuse and abuse (as they can be beneficial used correctly) but it was at the ignorant stupid doctors hands that even said slap on more. *sigh*

I looked like I had these huge balloons between my legs. Then I'd have to take a pin and prick them to let the water out to ease the pressure on that skin (that was biopsied as well and only showed blister water).. The next day they'd be filled up again and I've had to do that again over and over. It would oooze and weep and seep water and even pus. And believe me I cried with the horrible pain and the frustration of no one seeming to be able to help me.

And even during all that horrible time they still kept insisting I stay on a steroid. Absolutely horrible and with how little I knew back then, I listened. *sigh* It's no wonder I ended up doing so much research.*sigh* I sure didn't trust doctors to help.

Anyway eventually all that tissue basically died and was fried, and the tissue turned white/gray and all fused together with adhesions etc and it was determined that I had LS (lichen sclerosis) by several doctors after that..... and to look at any of the photos it was that no doubt about it, so whether it was that all along but overlooked since early stages aren't necessarily white but can be the severe red of inflammation or whether the trauma of the steroids (which can be a trigger as any trauma can be) brought it out who knows?

Anyway I knew all my pain was in the tissue itself and not from some deeper type of internal or radiating problem, I could touch it with my finger, even a feather would have hurt.. It's like knowing if you have a cut on your arm, it's surface, or if it's a deeper muscle pain, you know the difference. I knew it was the skin itself that was the problem for 'me'.

But that's when I basically told the doctors to 'go to Hell', and by then I'd already gone through at least 10 or 12 including the Cleveland clinic, and had gotten a computer & did my own research and I'm talking 18 hrs a day for months and months and months.... and found out about how the hormone creams the Estrace & Testosterone (the natural bio-identicals) can work to rebuild the tissue and is a great wound healer no matter what the name of the condition is IF it's a problem with the surface of the skin itself.

It works for vulvodynia and for LS, LP even for vestibulitis to rebuild those nerve endings and helps lessen the pain and it was the only thing I'd ever read of that could restore that and rebuild that skin as well, (and why they use that for menopausal women for restoration, they absolutely 'know' it works yet are reluctant to give it to younger people and that really upsets me esp. when they use the E even for little children with LS. Many legitimate articles talk about that.

Plus then of course the research went into far reaching fields about how hormones work and how progestins, progesterone, birth control etc.etc. all blocks those necessary hormones that are so needed. And I also learned that it just takes a small topical application to have it help where it doesn't need to be systemic, since some of the problems (if not more) may have to do with our hormone 'receptors' themselves not working efficiently. Where the blood levels may be just fine that has nothing to do with whether the 'receptors' themselves are ok and working.

Anyway hon that's just a real short version, but it did work (took 6 full months approx.) and brought all my tissue back to full health but I definitely do have to do a maintenance of using those 2 hormone creams (the E & T) about twice a week just a small dab topically to keep me well. And it's been 7 years this month that I've been well and even longer that I've been on the lists, *grin*... WOW talk about time flying,

hugs hon.

Dee~