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Recently diagnosed

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vissy
vissy

I was just diagnosed with lichen sclerosis a week ago. I have been using clobetasol twice daily for the past week. Today, I noticed the white spots on the outside of the vulva and the burning sensation has never really subsided. I was told by the dermatologist to follow this treatment for 7 days and then to stop. I have a follow up appointment in a week. All that I have read on ls forums say that it takes a lot longer for results. My question is, should I continue to use the clobetasol or ask the dermatologist to prescribe something else? And is there anything to stop the burning pain?

0 likes, 8 replies

8 Replies

  • sue47444
    sue47444 vissy

    Posted

    Hi you need to use it for longer and rub it is for 90 seconds and use a moisteriser I use caster oil 
  • Wlparadise
    Wlparadise vissy

    Posted

    Clobetasol and I do not do well. Burns and made it worse. I tried to tough it out because I thought it was how it was supposed to go. When I got to my next visit my Specialty Gynecologist said.... nooooo, if it gets worse stop and call. I also used my cell phone to take progress photos. Weird, but you can document progress. Clobetasol is a one size fits all go to drug when starting out. It's trial and error.

  • Wero
    Wero vissy

    Posted

    Hello Vissy, if you have symptomatic LS then 2 weeks twice daily application with a topical steroid is nowhere near enough. In fact most of us who have responded well to steroids never stop using them at all. We find that to continue on a regime of once or twice weekly maintains good skin condition and decreases the risk of flares and further progression. If you are finding that the condition is actually getting worse, then it is probably the wrong steroid and you may require an alternative. However, if it just has not yet responded, then you need to persevere. I think my regime was twice daily for 4 weeks, once daily for 2 weeks and then twice a week, only increasing if symptoms came back. Are you moisturising also as this is really important. You should stop all perfumed shower and bath products and only use pareben free products. You will see throughout conversations on here that we all eventually find what suits us as individuals. Personally I favour coconut oil as a moisturiser and lubricant and I wash in Dermol products and Aveeno shampoo as this does not affect me if it runs between my legs. Tight jeans, sitting for long periods and certain foods affect some people. Find what makes yours worse or better and keep reading the threads to gain knowledge. It is absolutely manageable when you understand it and take control. Good luck.
    • vissy
      vissy Wero

      Posted

      I was told to use a moisturizing soap, like "Cera-ve" and a moisturizer, like Aquaphor. So that is what I am doing. The burning is awful. I am also post-meopausal with vaginal atrophy. The GYN called that one, but missed the lichen sclerosis diagnosis. Can I ask the dermatologist about HRT since she is treating the LS? Thanks for your prompt responses, today.

    • KKay
      KKay vissy

      Posted

      Hi there, Vagifem is typically what most people start off with for VA. Use nightly for 2-3 weeks or however long it takes to feel a lot better, then taper it slowly to 2-3 times a week. If you need to take it more often, do so.
    • Wero
      Wero vissy

      Posted

      I have not heard of Cera-ve but I think it depends upon where you are in the world. I am in the UK. As long as what you use soothes and does not make you worse then go with it, we are all different. I feel a bit concerned about the burning and although a symptom of LS, mine worsened with Clob. I went through 4 steroid ointments until I ended up with Betnovate which completely turned things around for me. I do not like using it and would like to come off but the condition itself is more destructive than the medical treatment. LS thickens the skin and causes what appears to be atrophy or loss of architecture as they say. (I had this long before I commenced steroid therapy) It is actually fusing as a result of active LS. I have found that a combination of homeopathy and prescribed steroid treatment has worked for me in terms of halting disease progression and calming symtoms. Unfortunately it has done nothing to rectify the fusing but that's another story and a different treatment approach. Whatever you do, please don't get dispondent. We all have different opinions and experiences. No one is right or wrong but the whole point of this site is to share, learn and hopefully find a pathway that suits us as individuals. Oh and of course to give support and reassurance. keep us informed of your progress. Take care.

  • joanne55511
    joanne55511 vissy

    Posted

    Hi Vissy, a week is no way long enough to be on clobetasol.. I was told to use morning and night for at least 6 weeks and then reduce it if things have settled down.. I was many months before I got to the point of maintenance.. I suggest you read some of the threads and you'll get a lot of tips of other things to use for moisturisation, (I use epiderm) and bathing along side the steroid cream.. it's a case of trial and error in finding what works for you.. Good luck on your follow up - Jo x

  • cheryl33619
    cheryl33619 vissy

    Posted

    I am totally afraid to use steroid cream because it really eventually gives you a trophy and it thins you so much that you lose your women parts or lady bits I am doing alternative medicine instead
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