Just Diagnosed Lichen Sclerosis

So glad you found us. You've posted on an old thread (one of the topics whizzing by at the top of the page, maybe), but please come to some of the ones that are active. We're finding out so much that we can do on top of the standard (necessary) potent steroid ointment. We use only a miniscule amount of it and LS skin (thick with mostly dead cells) needs thinning, so most of us have stopped worrying about side effects and are concentrating on lots of positive things we can do to improve the resluts of treatment. Now that you're under a Gyn's care, you're not going to get cancer there, so nothing to be scared about.

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Click Lichen Sclerosus

At the top is the banner displaying moving topics. Ignore those and scroll down.

The first discussion topic is New to LS – Start Here 'pinned' at the top so new users can get the basics right away. We all got a lot out of watching Dr. Goldstein's presentation. This is not one of those slick 'webinars' by TV 'doctors', he's just an American gynaecologist who specializes in vulvar problems and has made a special study of skin diseases there. It takes about an hour. The charts are a bit tricky because the animated pointer isn't pointing at the things he's naming, but one woman here paused it and did screen captures of them and printed them off to show her clinic's presonnel.

Below that is the list of discussions in descending order of most recently active. In the top half-dozen discussions you'll meet all the women who are currently active here. We answer questions very promptly. It's incredibly good support, considering most of us don't feel we can talk about LS to almost anyone else.

LS is turning out to be extremely wide-ranging in its aggressiveness, but one common factor is stress. We all seem to have 'interesting' histories and lots of ups & downs. We're all frustrated (including Dr. Goldstein) that potent steroid cream is all we have, but the more we share here, the more things we find we can do to supplement the standard treatment to reduce the number and severity of flares.

If you're very young, and particularly worried about sex (most of us are past menopause because that's where LS usually strikes) you'll find a few discussions as you scroll down posted by a young woman specifically to find fellows.

If you have a long list of auto-immune disorders and are trying to get to the bottom of the whole thing, you can try Alternative Medicine. (There's a link in the New to LS – Start Here topic.)

I had a really bad time with what the doctor thought was thrush the year following my 2nd daughter's birth (age 40); this gradually subsided.

Now age 49, menopausal, in a new stressful job, just after a really bad bout of IBS, I am having another really bad flare up. For the first time ever after years of similar symptoms on and off, a doctor has suggested it could be LS. After using baking soda baths and tea tree oil mixed with zinc & castor oil and making sure I have enough sleep, the flare up seems to be under control though not abating entirely.  I now have a cold too which I don't think helps!  

What form does this zinc take? Back in the seventies when I was briefly a hairdresser, we used some sort of zinc-based dandruff shampoo that made me want to scream – my hands were always cracked from psoriasis (another ailment than sometimes goes hand-in-hand with LS).

My mother has rheumatoid arthritis too. 

Many years ago I had shingles on the left side of my waist.  I've been told this area lies along the nerve that wraps around your back and goes to your groin.  When the left side of my waist aches it seems to be a pre-cursor to tingling where I get the worst lesion and the itching then starts.  It usually happens when I'm sick, run down or stressed.  Do you have anything like that?

I cut out sugar at the beginning of this year with just the occasional relapse though I think I will get a diflucan prescription next doctor's visit as I often crash after eating.  I've also just started to cut down on gluten.  I don't really drink, but will miss real coffee so much if I have to go there.

I had a few headaches after quitting cooffee, first down from two cups to one, then none. It's easy now.

Thank you. I'm new here too and your post gives me direction.