Hi I'm 34 and my Dr suspects lichen sclerosis

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Hi my Dr suspects LS of the vulva and perinium, I have white patches itching and my skin tears easy. I am waiting for my letter from a gynaecologist. I am scared to death I feel like it is a death sentence. Does anyone have any positive feedback from the use of steroid cream and moisturizer? I'm concerned about the scarring shrinking etc that could happen in the future. Ant advice would be greatly appreciated x

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  • Posted

    Hi Tracey, sorry you are joining our club. It isn't a pleasant condition, but you will learn to live with it. Try not to worry too much, Stress does not help. I think most of us have a fair degree of control.Make sure that you follow the treatment p!an for the prescribed length of time, then try out some of the alternative treatments one at a time until you find something that helps, but still use the steroid . Good luck hope you don't have to wait too long.

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    • Posted

      Hi Ann thanks for your reply. It's just a shock because I have never heard of this condition before nor don't know anyone with it. I keep snapping at those closest to me because I'm scared for the future I'm scared of the scarring no sex life and the cancer risk x

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  • Posted

    Tracey . I was diagnosed 4 weeks ago . I felt just like you , there is some  fantastic advice in here and some great supportive people . My understanding is use the steroid cream , it is your best chance , the fusing that has happened has gone but you may be able to stop more . You need a good base cream . My gynaecologist prescribed hydramol but I can’t use it , so am actually using sudocreme. I think you just have to try and manage it and get it into remission . From what I can gather the really really bad cases are people who have never had treatment . I have been reassured by lots of people on this site you can manage this , it is not a death sentence , your life will go on, all these people on here live a full life . Please know we all feel your pain . Sending you the biggest hug ever xxxxx
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    • Posted

      Hi Jane thanks for your reply it has made me feel much calmer. I don't have any fussing as far as I can see or any scars as I can see at the moment the main symtom is itching and my vulva is almost like a white/silver color. Just reading different things on the internet and evn looked at pics I've scared myself silly and perhaps even seen ppl who have had no treatment or left untreated for a long time. You really have helped me thank you Soo much , big hugs back xx

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    • Posted

      Responding to Jane but my message is more a general comment.... it’s really surprising how the strength of the old timers on the group helps us new timers to be supportive and welcome all the new women joining. For me I found so much relief with this group that makes us want to share it with the new girls . Stay positive gals... xxx 
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    • Posted

      Hi Brigitte, thank you for your kind words and your support. My head is all over the place, one thing comes to mind though as regards to the "root" of lichen sclerosis....something I read about ages ago, said that one of the causes could be "ace inhibitors" blood pressure medication which I take daily. Also I have lichenoid inflammation on my gum which I could once again blame the ace inhibitors !!

      Vicious circle, you take medication for one thing and it triggers off something else.

      I suppose we have to trust our doctors at times even if we doubt them.

      Kind regards.

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    • Posted

      Hi Barbara, I think there’s probably different triggers to that desease so by sharing your thoughts about the ac inhibitors is another good trail for all of us. For instance I don’t take ac inhibitors, but the fact that some women mentioned hypothyroidism ( to me is reveling) for i do have hypothyroidism. All that said , the more we share the closest we are getting to at least prevent the degenerate state of our desease. Hugs xx
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    • Posted

      Thank you Brigitte,the least we can do is offer support in the early,stressful days. Others were there for us when we needed it. I wish I had found this site sooner, I was more than a year down the line when I found it!
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    • Posted

      Hi Brigitte, wise words...thank you. All I can say is thank goodness I have discovered this forum, it's such a relief to be able to talk freely about this awful condition..... I am honestly too embarrassed to talk to anyone about it apart from my lovely husband. I wonder how many people are suffering in silence.

      Big hugs x

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  • Posted

    Hi I have been using aloe Vera belly and that seems to work as it calms it all down I also use the steroid cream but have been told not to use it too much as it thins the skin 

    I am still getting use to it all but it’s good to hear what other people have to say 

    hope you get seen soon x

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  • Posted

    Hi Julie,try to watch Prof. Goldstein lecture, there is a link on This site. He explains that the fusing is caused by the skin Thickening therefore the skin thinning properties of the steroid are desirable to hold back the fusing. If I am particularly sore I use Vagisil cream which is soothing and has anaesthetic properties.
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  • Posted

    Hi Julie, I have a lot of fusing. After I was diagnosed and done the initial treatment the soreness had gone and I was complacent just using a little steroid weekly or if I was itchy or sore, and didn't do a regular visual check , that was when the fusing galloped on . I haven't tried to unfuse, but I so use a weaker steroid(Eumovate) most days I do still have fusing but it doesn't seem to be increasing. You do have my sympathy. I am 73now and have only had it for about 5 years. You younger ladies have it much harder I can understand that your worries will be much greater than mine.

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    • Posted

      Hope you don't mind me asking but did you already have fussing prior to being diagnosed with LS or has the fussing come on since you've been diagnosed and treatment has not stopped it happening? As far as I can see I don't have any fussing but I have white plaques and itching that drives me crazy especially at night. Waiting for letter from gynaecologist but only been diagnosed a wk ago it's the not knowing or lack of understanding that's hard at the moment xx

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    • Posted

      Hiya I had fusing 1st but I didn’t realise what I had got until I went to the drs cause of that pain and I was swollen the steroid cream helps me but the aloe Vera jelly calms down the itching i am hoping that with time I can control it I am also going though my change which doesn’t help the joys of being a woman!!! X

       

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