Lichen Sclerosus along with Behcets - Behçet's UK

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Lichen Sclerosus along with Behcets

AllotmentVagabond
AllotmentVagabond

As a newbie on this group I’m full of questions that I’ve never had anybody to discuss with before. Does anybody else with Behcets also have the horrible condition of Lichen Sclerosus? I’m sometimes confused as to whether my almost-constant genital problems are due to one condition or the other. I’m sore a lot of the time, and itchy, and I end up splitting which then sometimes looks like ulcers. The Lichen Sclerosus has resulted in partial labial fusion. Because I already ‘had’ Lichen Sclerosus when I was diagnosed with Behcets, I’m unsure of exactly how the Behcet ulcers should look.

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Hi, you sound exactly like I was. I was diagnosed with lichen sclerosis ages before the diagnosis of Behcet’s. It’s a horrible condition. However, since starting colchicine for Behcet’s I haven’t had the splits anymore so I wondered if it was part of the Behcet’s or not.

Wow. Perhaps the ‘splits’ are the Behcets ulcers then. Because the gynaecologist thought the lichen sclerosus didn’t look too bad and I wondered why I was suffering so badly. Thank you.

Hi, I also have both conditions and am a newbie as well. To me the small cuts in the skin are the lichen sclerosis and are different from my Behçet ulcer flare ups. The splits (cuts) in my skin have been completely gone since I started a topical high potent steroid cream (clobetasol). My ulcers that I get are not cuts and instead actual ulcerations that occur when I have Behçet flare ups. Hope this helps. I’ve been told before it was impossible for me to have both conditions at the same time which I definitely do not believe now.

Thank you for the clarification. Why on earth were we blessed with TWO appalling vulval conditions?! I’m wondering if mine both flare up at the same time because at the moment I have both splits and also what does look like an ulcer. I was prescribed Clobetasol about eight years ago for the LS, but have been told off by gynaecologists for using it too often. However, I still have a half-used tube and it does help.

My gynecologist is very knowledgeable and attends seminars regularly she told me the newer seminars she has attended have gone over that high potent steroids actually don’t have the negative long term affects that many gynos believe they have and she tells me it’s okay for me to take it daily I sometimes do twice daily if I feel it’s really needed and doing that has put my cut like fissures into total remission.

I also have been told that I may have LIchen Sclerosis. I am always itchy, have cuts, and labial fusion as well. I first started with my Behcet’s about 10 years ago and was formally diagnosed around 5 years ago after an awful flare in the vaginal area with multiple small ulcers that made it hard to walk or pee. The ulcers I get down there don’t look quite the same as my oral ones, but my doctor confirmed they are ulcers. They are concave like my oral ulcers, I just don’t see the whitish color in the center. In fact, the ulcers I have gotten the past few years seem to always occur in the same spots. I have used clobetasol to help when it gets bad.

Thanks for your reply. It helps to read of other people with a new perspective on what felt a very ‘lonely’ set of conditions. I do have clobetasol, which I was prescribed for my LS.

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