Newly diagnosed at 33 and looking to make small support group

Posted , 18 users are following.

Hi all,

I'm a 33yr old woman recently diagnosed with Lichen Sclerosis and feeling pretty annoyed about it.

I've been using Dermovate for a month or so - symptoms def improved but white patches have grown and sex life with bf has all but disappeared.

Are there any others (possibly newly diagnosed) who might want to start a small private support group to document our individual journeys and trials? I'm thinking of trying some dietary changes in the NY etc.

Thanks for reading. Would be great to hear your stories and try to make the most of a scary diagnosis.

0 likes, 24 replies

24 Replies

  • Posted


    my name is Jill and yes i am interested in joining a group ! i was also diagnosed recently and have had for ten years and SUFFERING . Medicine doesn't work .... the other choices Suck . Looking for more answers !!!!

    • Posted






  • Posted

    I would love in in this group! Im 36 and only diagnosed a few days ago. Terrified, should absolutely NOT have googled it and embarrassed to tell anyone about it.

    Can i just ask, when ye initially started using the steroid creams did it sting/burn? Ive been told to only use them 4 times a week and its quite burny so i cant decide if its helping or making it worse. Im also terrified of putting it on - its not obvious to me where it needs to go if that makes sense. No really obvious areas....just sore all over and inner labia disappearing 😦

    • Posted

      It is a scary diagnosis, but there are tons of ways to make it managable, and I totally understand the embarrassment part- but you are not alone! I have been able to find a ton of support from loved ones and in my opinion, the more informed they are, the better than can support you and any changes you have to make. Not everyone needs to know the nitty gritty, but do not be ashamed! And use that little hand mirror!

      My understanding/experience with clob, is to use generously from clitoris or anus. For me it burns for about the first 10-20 minutes after application then goes away. Though I only use it for inflammations 2-3 times a day- not maintenance.

      From this site I learned about emuaid, which is expensive but I have been impressed with it and intend to stick with it.

      Lots of ladies swear by baking soda and regular use of emu or coconut oil. I'm just starting that style of regimen and have yet to make an opinion.

      My recommendation is to read as much as you can from this site and try things out! I have found a lot of help here and hope you do to ♡

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