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External lichen sclerosis

Posted , 6 users are following.

mary221150
mary221150

hi I have external LS for 6 months . Have been on clob and pro topic with no improvement. Any suggestions. I live in Dorset and not very confident with my dermatologist 

thanks

0 likes, 10 replies

10 Replies

  • norma54754
    norma54754 mary221150

    Posted

    Hi mary,

    LS is a strange disorder mary. Each of us vary in condition and responses to treatment.

    It's not helpful to you when you don't have confidence in your dermatologist.

    Is it possible for you to change your dermatologist.

  • kathryn07219
    kathryn07219 mary221150

    Posted

    What do you mean by "external"?  If it is still in the area of your genitalia, you should be seeing a gynaecologist rather than a dermatologist.  My dermatologist won't even look at my gynae area and my gynaecologist has no interest in anything but my gynae area!  I am in the UK also so am assuming that the doctors follow the same protocol whatever the county.  If the LS is other than on your genitalia, I would have thought you should be using mometasone.  Might be worth pursuing.
  • Morrell1951
    Morrell1951 mary221150

    Posted

    Mary, it takes more than six months to settle it down. It took two years for me and that doesn't mean I don't still get flare-ups. I'm interested that you're on both clobetasol and protopic. My gynae switched me from Dermovate to Protopic six months ago. I have heard someone else say they alternate.

    You call it external LS, but if it were internal it would be LP (lichen planus).

    • mary221150
      mary221150 Morrell1951

      Posted

      My dermatologist calls it external though this seems to be causing confusion. My LS is on my elbow /armpit and groins not the genital type
  • kathryn07219
    kathryn07219 mary221150

    Posted

    Mometasone works every time for the LS on my back.  Usually takes just a couple of applications but when it's really bad it takes 4 or 5.  The dermatologist told me that mometasone was the strongest topical steroid available and that if it didn/t work, there wasn't anything else.
    • lynne1945
      lynne1945 kathryn07219

      Posted

      Hi Kathryn, just saw this comment and it pin pointed to me how different countries have the same drug names but can be different in compound and strength. Here in NZ Mometosone is weaker by about two thirds than Clobestasol, I had to be 'upgraded' to Clob two months ago. 

      And Dermol here IS another name for clob whereas in the U.S. I believe Dermol is just a waterproofing barrier cream. May be the same in UK. Funny old world. Mistakes can't be made though as everything has to be prescribed in the steroid line of course.  

       

  • eyebtwinkle
    eyebtwinkle mary221150

    Posted

    I have extragenital as well and regular LS.  The clob and constant moisturizers keep the genital area totally under control as well as wiping with a moist wipe so there is never urine left behind. My problem is the extragenital.  The itch is out of control after a shower so I have to take baking soda, oil baths and I have to wash my hair in the sink.  I think the friction of the shower brings on my itch.  Every where there is elastic or any synthetic material touching me, I have it.  NOTHING has made it better.  My gp said I am gluten intolerant and have the gluten rash as well but have been months with strict gluten free to no avail.  My dermatologist told me it wasnt a gluten rash but a REACTION to the steroids she gives me for the lichen.  I do seem to itch less if i eat a VERY low carb diet.  I am desparate for help for the body lichen sclerosus.  Tired of wearing loose dresses and no bra!  The extragenital rash is 1,000 times worse to me when I had the genital breakouts and they were bad.  Anybody with ANY advise on the body lichen would be greatly appreciated.  Thanks!
    • eyebtwinkle
      eyebtwinkle

      Posted

      I typed above.  Meant to say the extragenital rash is 1000 times worse to me than the genital flares I have had, and they are bad.  I can't figure out how to edit a comment after I enter it. 
    • Morrell1951
      Morrell1951 eyebtwinkle

      Posted

      If body LS is a bit like psoriasis, which I've had longer than LS (40 years)  I can't say too strongly that stress is the main cause. My gynae said LS is 'related' to psoriasis. If there is a situation in your life that you're putting up with I suggest you take the bull by the horns and change it, if at all possible. I thought I was stuck for life in a relationship after four years and last spring there was an opening where he said, 'Do you think we're done?' I'm sure he expected me to say 'No!', but I took a deep breath and said 'Yes!' Best decision I ever made.
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