Posted , 12 users are following.

hi everyone! Has anyone noticed that this damn disease is still progressing even when you have no itching or soreness!  It does it silently and when you look you have more fusing!   

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  • Posted

    Yes I was hoping the regular use of Clobetasol would stop it. I think the fusing can come and go. My vulva has gotten tighter and smaller it seems and then it seems to go back to normal. My vulva lips are smaller but that's okay for me if you know what I mean.

    Please anyone with good results comment for us all.

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  • Posted

    Hi Jackie,

    I had an interesting discussion yesterday with a Women's Health Physio,

    she made the point that regular use of Clob. could help prevent fusing, this

    followed me saying that I only used it once a week, she asked why on earth

    would I only do that when it could help prevent fusing - I hadn't been aware

    of that!!

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    • Posted

      I think many women are reluctant to use it because of the dire warnings of skin thinning that have always and still are given out by gps. What they don't realise, because they have no real knowledge of the disease, is that LS THICKENS the skin so it does not apply to us who have it, our should I say MOST of us, I dare say there are some exceptions as with everything. I use it twice a week as maintenance (that's the recommended amount) but increase if I feel any tingling or just feel the skin looks redder than is like. I always look at the area, most days in fact because I have in the past had white patch appear when there has been no itching. So I like to keep on top of it and hit it with the Dermovate every day for a week or two till it goes. I do understand how scary it is, I didn't want to see what ravages had been caused but ignorance is not bliss I'm afraid . By catching things early you can maybe prevent further damage. I use a dilator twice a week too and highly recommend them for keeping the vagina "open" and more elastic.

      Also if there is anyone who didn't know- the steroid is better absorbed in an ointment form rather than a cream and should always be rubbed in for at least 90 seconds to help it penetrate to the deeper layer of the skin where the inflammation is.

      Hope this helps ladies


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  • Posted

    I think that lubricating regularly in addition to the clob also helps prevents silent fusing (and like you I have suffered from the exact same thing.)  Every best wish.
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  • Posted

    Hi Jackie,  Have you been doing the baking soda baths and Borax treatments?  With these treatments, over the past year my LS has been continually healing, not progressing (without the use of steroids).  Steroids stop the symptoms, but you need to do more to unfuse.  It appears that LS needs constant attention to keep at bay.
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  • Posted

    Absolutely....I'm so glad you brought this up because many might not be aware LS continues silently.  I just discovered (from a wonderful specialist nurse at the vulva clinic) that i should have been doing maintenance with clob, even without any flareups for some years. The LS is clearly still there, silently doing its worst - my anatomy has changed with fusing but I did'nt really notice, and then got a fright when I had a good look. They examined me on camera at the clinic and I could then see. I was first diagnosed on 2010 (I was 63) with a bad flare up, put on Dermovate twice a day for a month, reducing to once a day and eventually twice a week, as the flare up calmed down. I used it sporadically for a while, but with no discomfort or flare ups I thought it had gone - until I just discovered. But it seems the medics know much more about LS now - I was not told then to keep it up. Now she says I should apply a couple of times a week as maintenance, probably forever.  But having read more on this site, I'm keen to try other treatments - following the borax thread...

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  • Posted

    You are so right Jackie, a few months after my initial diagnosis and treatment

    I wondered what all the fuss was about as all felt calm and comfortable.

    However, what a shock when I looked because sex was feeling uncomfortable.

    my anatomy had as you put it "silently" re arranged itself. Fusing had commenced

    and unfortunately continued as I did not then understand what it was.

    We cannot be flippant and need to keep on top of things even when we are feeling ok.

    In another post I have recently said that I am sick of messing about with my bits

    and never want to look again and it does get to you sometimes. Steroid ointment

    is the answer though and must always be used to maintain skin integrity.

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