1. Community
  2. Women's health
  3. Lichen Sclerosus

Diagnosed3 years ago.

Posted , 5 users are following.

rona14627
rona14627

Used clobesol. Changed to emu oil, now that doesn't seems to be helping. I am miserable all the time. I also have vaginal atrophy. 

Any suggestions. I need help. 

Bub

0 likes, 5 replies

5 Replies

  • lynne1945
    lynne1945 rona14627

    Posted

    Bub

    sorry you are miserable!

    from what I have read on this site and others you can't replace a steroid with emu oil, Clobetasol is for life maintenance. Emu oil and coconut oil etc are for soothing and to prevent drying out too much. I'm sure others here will give you more info and there is much information at this site. I have had a lot of good advice and only been here three weeks. 

    Do you have a good vulval health specialist in your area  because sounds like you need help

    wish you well

  • Guppy007
    Guppy007 rona14627

    Posted

    Hi, sorry your having such a rough time.  Take some time to read some of the older posts on this site, you will learn a lot.  Go to the newbies section and make sure you listen to the Webinar by Dr Goldstein, again, its full of information, and lasts about an hour.  With LS you have to become informed,  in order to manage it, which I promise is possible, its understanding what causes your flare ups, how to prevent them, and how to treat them when they occur, it takes a bit of work but you will get there,  the key is knowledge, educating yourself.  Diet plays a role in LS, and the biggest and most important thing you can do now, today, is cut out sugar immediately, and you will should notice a difference quite quickly.  I hope this helps a little..
  • Morrell1951
    Morrell1951 rona14627

    Posted

    Yes, Bub, you probably expected clobetasol to work quicker than it does. It takes between three months and two years to really settle LS down. There's also Protopic. That's what I was switched to after 18 months on clobetasol. Do go back to your gynaecologist or dermatologist and try again. I'm so grateful to have treatment after forty years of suffering on and off with no idea what it was. As Guppy says, there are also lots of other helpful things we do to prevent flares and soothe.
    • Morrell1951
      Morrell1951 mary221150

      Posted

      It's been six months. I wish I'd had it two years ago when I was diagnosed just after my inner labia finished fusing over my clitoris. Maybe I could have undone that adhesion. Water under the bridge. I was in a bad relationship anyway, and definitely not in the market for a new one, so sex is off the table. Tacrolimus is used in cases of scarring and to prevent transplant rejection, I think. Whatever sideeffects you read about are for systemic oral doses. We're using tiny topical doses. The main thing is not to have constant open tears, which is an open door for 'bad cells'.
Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.