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New lichen sclerosus diagnosis - question!

Posted , 5 users are following.

hannah_66148
hannah_66148

Hi everyone, I have recently been diagnosed with LS and am wondering, do others experience this in phases? I seem to itch at first, then I notice one single open patch of skin that is sore to the touch. I am currently on clobetasol which seems to help

But what I'm wondering is do others experience open ulcers like this?

For general info I am 24yo and diagnosed about 2 months ago. !

0 likes, 6 replies

6 Replies

  • sue162
    sue162 hannah_66148

    Posted

    Hi Hannah,

    it's good you've come to here as you will feel less alone knowing that others have it and can discuss things openly with people, one thing that's hard to do with this disease.  I didn't know I had L S and had never heard of it before.  I had a sore type ulcer thing that the clob did get rid of after a few weeks.  My skin was very sore and is still as well.  How long are you to use your ointment for?  I felt better using coconut oil as well to keep things moisturisered.  Do you go for follow up soon?

    • sue162
      sue162

      Posted

      Sorry you asked about ulcers, unknown to me I had lesions I swear they came from trouser seams as they were like a long tear where the seam crossed under neath so watch for tight trousers as I found anything putting pressure there hurts.  Hard when you are young I know as fashion is tight jeans etc.  I have a lot of blisters at the moment as well.
    • hannah_66148
      hannah_66148 sue162

      Posted

      Thank you for your response sue! Reading these posts have helped me a great deal as far as coping! Well, I went to the student health center and they recommended using it twice daily for a couple months until controlled and then backing off to using it more sparingly. It's not necessarily an ulcer, just looks almost like a raw open piece of skin which I think could be how I recognize my flare ups. I start itching for a few days and then this happens. I don't necessarily have itchy white patches but it does itch for a couple of days followed by a small piece of open skin (so small I need to use a mirror or take a picture but it feels like a paper cut almost)! I bought some coconut oil and will have to try that!

  • mary09950
    mary09950 hannah_66148

    Posted

    Yes I had an sore with thickened skin that I thought was folliculitis. It would come and go. This was before my diagnosis. The Clobetasol should help control this. My suggestion is that you should keep entire area moisturized all the time. I use the Clobetasol twice a week at bedtime and Aquaphor everyday all day long.

    Keep reading posts on this site for other ideas and talk to your doctor.

    Take care and good luck.

  • Jessicat
    Jessicat hannah_66148

    Posted

    Hi I'm 21 and was diagnosed with LS when I was 19, I had to stop wearing tight jeans and knickers as i found that it would rub and I would get red sore patches in the areas it rubbed. I found when I started to wear dresses and skirts my symptoms improved a lot. I don't experience any ulcers or blisters, and a I don't have any white patches either. I just get itching and soreness and the skin feels dry and kind of sticky? So I use coconut oil to keep moisturised, I use clob about once every 2 weeks now 

  • Kubie
    Kubie hannah_66148

    Posted

    I have had good response by using protopic ointment (via dermatologist) Anti-histamines/Fenofexadine and Fresh Cut (ONLY) Pineapple not canned and not been sitting out. The pineapple helps with the skin and keeping it from shriveling. The bromelain in the pineapple has also been helping with general muscle pain and fatigue that goes with my Fibromyalgia!
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