Friday, March 28, 2008
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LS and what it is. For women and the men who love them.
Currently Reading
The V Book: A Doctor's Guide to Complete Vulvovaginal Health
By Elizabeth G. Stewart, Paula Spencer
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Spelling is going to be the first thing. Sclerosis as opposed to Sclerosus. Sus/sis, same thing but most doctors use sus so I will too. Normally I will shorten to LS.What it is not:
Contagious or communicable (This is not a veneral disease)
Curable.The best you can hope for is remission of symptoms. But at least you can rest assured that you or your behavior didn't cause LS and your good or bad behavior certainly won't pass it on.
What it is:
LS is a fairly common major skin disorder of the genitals and body. It is a benign, chronic condition that must be treated or symptoms will not resolve. (Current treatment is with a super potent steroid cream or ointment and a host of other lifestyle change like unscented laundry soaps, no scratching etc.)
It affects males and females and can include children all the way up to senior citizens. Sadly many little girls who develop LS are often mistakenly diagnosed as being sexually abused. The most common percentage of cases are women and the most commonly affected place is the vulva, though I have spoken with a woman who has small areas of LS on her arms and back as well as vulva.The most frequent symptoms are:
itching
burning
thinning skin
tears or fissuring
redness
pain during intercourse
You may or may not see: Depending on whether you actually look.
White patches
purple patches
Basically everything in the V area inflamed, irritated, swollen or disappearing etc.Diagnosis is with a punch biopsy in office or is some cases strictly visual but then your taking a chance of being treated for something you may not even have.
You may have no symptoms at all or just one or two. I personally had intense itching. Believe me poison ivy would have been a walk in the park compared to this. It would wake me from a sound sleep and nothing brought relief for long and this went on day and night for well over a year. Then as my condition went undiagnosed and later treated improperly my skin began to thin and then tear every time I urinated. Can you say ouch! I feel myself incredibly lucky though. In some cases severe or prolonged inflammation can lead to flattening of the labia minora (which can disappear completely) or fusing of the clitoris to the hood. There are also cases of the vaginal opening shrinking or even closing. The stories I have read make me shudder and I guess that's part of the reason I decided to be brave and take this out of the LS forums and bring it wider attention. There is also a very rare risk of vulvar cancer current estimates are less than 3% of total patients but it should be mentioned.
How can we women who are so savvy about monthly breast exams, yearly mammograms, pap smears and vaginal exams not know such a major vulva condition? How can a gynecologist miss a supposedly common vulva skin disorder? I had never even heard of it and half a dozen doctors who diagnosed me incorrectly with yeast, bladder, urinary tract infection and a host of other vulvo/vaginal complaints never even mentioned it as a possibility. At least I’m assuming they were competent doctors and just missed the LS, the alternative is even scarier than the LS. That many idiot doctors is really scary.
Here's some questions. How comfortable are you with your vulva? Do you know all the parts? Have you ever heard of doing a monthly vulva exam the way you do with your breasts? If your vulva starts a slow shift from normal would you notice? Do you know how to exam your vulva? Does the whole subject make you cringe? Why? Is it the disease part or is it the issue of "we don't discuss our bits in public"?
I will be delighted to get any and all comments and answers to those questions. And I will answer any others you might have about me since I have decided to open up about this "common" condition!
I will do my best to find answers for you if I don't know it or to at least point you in the right direction regarding LS.
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Comments (8)
Thank you!
I have a different incurable, non-communicable disease, and for years -- decades, really -- I have been living from one period of remission to the next. May your flareups be few and your remissions be long.
Re: my vulva, ever since I had chicken pox when I was 19, I've had a recurring patch of herpes on my left labia majora. It alerts me to each new infection I get, and usually shows up a day or two ahead of the swelling and inflammation in my ear-pierces, which always show up when my immune system is activated.
Knowing one's body can be interesting, satisfying, and a life-saver. So sad that our culture often discourages it.
I googled LS. It's amazing that so few people have heard of this. All too often our (women's) medical knowledge is limited to the trendy diseases listed in women's magazines.
Not that I'm saying those diseases don't count, I just mean that there are trendy diseases and they get all attention, money, and interest.
@fullmetalbunny - I'm not in any way trying to downplay them either, however if I had the slightest bit of info I could have alerted my doc by being better informed. It made me want to share so other wouldn't be in the dark like I was. The research for the disease of the week far outstrips funding for something like this. Can you imagine if they threw even half the amount of research money spent on Viagra onto something like this, wow?
I hope you help me spread the word by telling your friends to come and take a look at the info I'm presenting.
"Major vulva condition" is hilarious.
Hi, thanks for your visit and comments. It looks like you have a major undertaking going on here. Lots of great links on the internet to help you out. Great medical dictionaries etc.
Have a super week,
Dear Friendly,
As I age, I've been noticing my "body", an experience that doesn't happen when one is young. You take your body for granted until it starts breaking down. Lately, I've started developing dry skin patches, and this has never happened. I should probably use lotion, but it's weird for me to change old habits.
I'm late having my yearly check up, too, cause I haven't paid off my last hospital bill.
This is a good thing to gain awareness of conditions that are treatable and preventable but aren't really known to the populace at large. I've certainly never heard of L.S. but I'm a guy.
And sorry, but I was tempted to tell you everything is allright with my vulva.
You're right, my readership is growing another notch. I'm almost in the 30 comments an entry league. Knowing me, as soon as I get there, I'll get tired of blogging so vigorously and hiatus for a while, and lose momentum, but even when I do, I always post sporadically and come back with both barrels a while later.
Michael F. Nyiri, poet, philosopher, fool
Michael F. Nyiri,poet philosopher, fool