Lichen Sclerosus
Posted , 12 users are following.
I have recently been diagnosed with Lichen Sclerosus. I'm using the prescribed potent steroid twice a day for 4 weeks then once a day for 4 weeks then twice a week for 4 weeks. I am using an emolient soap free cleanser & a Sitz bath with a diluted solution of Cider Vinegar. I have had this condition for about 4 years & am very sore & itchy. I have visited a number of discussion sites & have ordered some Emu Oil as it seems to be highly recommended. If anyone else has any tips for soothing this condition I'd really appreciate it.
1 like, 30 replies
all_the_kings_horses
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janette25
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Since I have had L S I feel so tired by mid day next day due to lack of sleep
In the daytime I use Vaseline or pure olive oil or baby Sudocream to keep me comfortable
And no underwear
I am aged 75
But I find GP,s lacking in care about the L S
margaret55973 janette25
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Morrell1951 margaret55973
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You've posted smack in the middle of a dormant thread. Betnovate is not nearly as potent as the stuff most of us are prescribed (Clobetasol in America, Dermovate in the UK). I was given Betnovate for psoriasis for many years. I think if you went to a gynecologist or a dermatologist they'd give you the strong stuff. I went undiagnosed for my whole 61 years and the year since diagnosis I've used one 50 g. tube of Clobetasol cream. I use it twice a week or so. It's been decided recently that the skin doesn't actually thin from using it. We're meant to stay on it permanently, although one woman here said she was so clear her Dr. said she could quit for now. It's supposed to be a steady low dose, rather than a quick fix.
Margaret, try commenting on some of our recent discussions. We're having a great time here, helping each other and thinking how we can change things so not so many of us fall through the cracks for so long.
Tell us how it is now. It's so helpful to compare notes on something we don't talk about in our lives.
margaret55973 Morrell1951
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Morrell1951 margaret55973
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There are many other things I've been learning here that have helped a lot. I used to scrub and suds like mad, but that was the worst thing I could do! Now I only use water. And lots of oily creams are a huge relief. Loose cotton panties, no tight trousers. And there are lots of opinions about diet, but for me, excess sugar, especially chocolate makes me burning red within half a day. I usually did an extra day of Clobetasol when that happened, but after I became convinced I have no trouble resisting those former 'treats'. I put sugar in my coffee and eat it in some things – it's not extreme, but a huge ice cream cone or slice of cake is just a mistake for me now.
all_the_kings_horses
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Me too! LS seems to bother me far more at nighttime, so perhaps there is a connection! If I have a flare-up, it is almost certain that I will have a bad night's sleep. Someone suggested using the steroid cream (I use dermovate) mixed with emu oil and this does seem to help a lot. I travel around quite a bit though and emu oil gets very runny, if it is not kept in the fridge!
I am 71! I don't think it is so much a case of doctors not caring, I believe they do not know ENOUGH about this condition! I was fobbed off for ages, before I came to my senses and went to a dermatologist, who immediately recognised the symptoms.
Take care,
Horses xxx
jean1951
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jean
Morrell1951
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Any of you using estrogen cream in addition to the steroid cream? I've been prescribed it because my ObGyn believes it may reverse the atrophy, but now I remember how depressed I became on birth control pills. The stress of this bad mood only makes the LS flare up, so I'm stopping it. I have a big jar of plantain ointment made by a friend. Very soothing.
Also, with the sleep issue – for a couple of years my inner thighs were itchy and red, burning. I couldn't go for long walks (or even short ones) because they'd rub raw. Since then even though they cleared up I've never stopped wearing a long nighgown or pajamas so my thighs can't touch and get hot and sticky in my sleep.
jean1951
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jean1951
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Morrell1951
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I'm not ready to stop the clobetasol, since the flareup I was having this summer was unprecedented and the cream has really calmed it down now. I'm pretty scared of what would happen if I stopped. I'd never had what women here call 'toad skin' until this summer – itchy red bumpy labia majora. And a fine crack in the crease outlining my entire labia minora, as if they were planning to separate and depart. Then I had a huge boil erupt right where the clitoral hood had fused over the past decade or so. Not to mention the big chronic crack on my perineum, echoing the episiotomy I had with my first child.
I learned to distrust cortisone creams after thirty years of using them on large swaths of my body for psoriasis. I had some bad flareups after I went cold turkey – moon face and all. I recall dermatologists warning me not to use them on my genital area because they'd thin the skin. Well, forty or more years of untreated LS did just a fine job of that anyway. I'm using the clobetasol at this stage of my life because I've seen the images of old ladies' totally flat, closed vulva – some need surgery just to pee!
Yeast is often confused with LS, but there's plenty of yeast there, always has been, waiting under the surface for the slightest friction to disturb and stimulate it. The very next day after the one post-diagnosis time we had sex, it was Cottage Cheese City.
Anyway, Jean, I feel vindicated that you also go for non-traditional care and value a calm mind. Giving up your job will probably lower the stress in your life and your granddaughter will be a light in it, I imagine. I left my very stressful job when I was 53. Who knows what a mess I might be if I'd stayed in the city. Here I live in quiet woods among enlightened friends and with an affectionate and understanding man.
Morrell1951
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jean1951
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jean1951
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