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Scared

Posted , 7 users are following.

Lil09
Lil09

Hi everyone,

I was diagnosed with lichen sclerosus a few years ago butt after I was diagnosed I really had no symptoms for the last two to three years. Beginning about 6 weeks ago I started getting terrible flare ups with no letting up. Many of the stories I'm reading on the internet are so scary, I don't know if I should be reading them. My sister has been very ill and in and out of the hospital and my dad passed away a little over a month ago, is this it all stress related? I have had a steroid cream for when I do need it and now I've been using it every day. Do I use the steroid cream like it says daily or do I hold back because of the possible side effects from it. I can't get back into my Dr for a couple of months. I am really glad I found this forum and I'm hoping to learn more. Thank you

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  • wendy14679
    wendy14679 Lil09

    Posted

    Hi Lil09,

    ​I have just read your message and all the following comments.   I have to be honest, this forum has helped me more than anything else.  I have learned so much and listened to all the honest advice that people have kindly given me.  Hanny is right, what might work for one person might not be the perfect solution for the other, but we live and learn.   I have just had an appointment with a gynocologist, thanks to a very kind lady on this forum.  As a result, for the first time in quite a while I feel I can count on someone in the medical profession to help me when I need it.  She also advised that if I have a flare-up I should not be wary of using the dermovate ointment until things improve.  We have to consider  it as our friend and not our enemy!!  Otherwise, twice a week.  I try to stick to Wednesdays and Sundays, but occasionally I forget which is not a good thing for me.  The very best of luck;  we are all rooting for you.  Wendy

    • Lil09
      Lil09 wendy14679

      Posted

      Thank you so much Wendy! All of the responses have helped me so much. I have been so down and out and worried these past weeks because I realized that it is so very real for me now, but I need to snap out of it and just do my best to keep it under control, as it is what it is. Is the Dremavate cream a steroid?
    • wendy14679
      wendy14679 Lil09

      Posted

      Dermovate ointment is a steroid, but do not be afraid to use it when you are having a flare-up (itchy), as this quickly gets things back under control.  Good luck!
    • Lil09
      Lil09 wendy14679

      Posted

      The ointment that I have starts with a C, clobetasol (sp?) I'm assuming dermovate has to have a prescription from the doctor?

    • wendy14679
      wendy14679 Lil09

      Posted

      I believe clobetasol is the equivalent of dermovate and yes, you need a prescription from the doctor - in the UK.
  • sandra01720
    sandra01720 Lil09

    Posted

    I understand your fear. And I'm so sorry about your dad and sister. I lost to my mother to leukemia 24 years ago this month and I was crying for her today. I was diagnosed with LS a little over two years ago and I was so scared. I had LS for many years without a diagnosis. I learned so much on this forum from ladies like Hanny and Morrell. They reassured me, guided me, and taught me. Others were very helpful too. I am now able to manage my LS quite well, thank God. My Gyno says I have no fusing. I do develop some scarring around my clit sometimes. Seems to take steroid to keep that at bay. I use EMUAID ALOT! Love it love it! Also use emu oil. Find during my period, Vaseline works best. I need a super barrier from my flow. When I'm travelling, again, Vaseline works great. It's not your healthiest choice but gives more protection for special times. Every now and again, I get scared about some issue with it but largely, with my natural products, some steroid, baking soda baths I'm relatively comfortable ( I do experience a lot of itch at times)sad.

    Three triggers for me: sugar, stress,and sweat. If I sweat, I need to wash off and cool off very soon or I will start that crazy itching shortly.

    Hang around here. Lots of good support. I didn't feel nearly as alone after I came on this forum.

    • Lil09
      Lil09 sandra01720

      Posted

      Thank you so much Sandra! You all have been so wonderful and I am feeling better about things.
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