I am interested in anyone's treatment of Lichen Sclerosis, and how it worked

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Helle Everyone,

I am new to this site.  I live in Victoria Australia and I was diagnosed with LS 4 years ago.  I have fusing which I had been told can't be reversed, so I have been very interested in the comments about the Coconut Oil.  I have been using Diprosone OV Cream and had most of the LS under control.  I see a Dermatologist 6 monthly.  To be honest I got slack with the cream and wasn't applying it twice weekly anymore.  So of course i have now active LS again but this time when I use the Diprosone OV Cream I am bleeding and sore.  I do not have an itch and hadn't had flare ups I found the LS originally whilst grooming the area.  I also have a leaky bladder, which the doctors will not correct,  so I have constant urine to skin contact which in my mind, is what has caused the flare up at the moment due to having a chest infection and continual coghing for months.  I started to use Organic Coconut Oil today to see how things go.  I would be grateful for any other tips as I was thinking about using Emuaid of Vaseline as a barrier but I thought I would try the Coconut Oil when I read the posts as I thought it might be gentler.

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  • Posted

    Hi Julie, I too have a degree of urinary incontinence,and use tens

    Liners which do wick away moisture. I also use coconut oil

    after spraying with water with bicarbonate of soda dissolved in it.

    This after most toilet visits. I use the steroid cream just once a week

    There is a link on this web site to ''an e

    experiment with borax'' In The UK borax is banned so haven't been able to

    Try it. Good luck.

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    • Posted

      Thank you Ann. I Do use a panty liner I used to use TENA but I read somewhere that it wasn't good for LS so I changed to Poise, the brand they recommended.  I was looking for the info to post on here but I couldn't find it. I was reading about Borax and was going to see if I can buy it in Australia.  I am using the coconut oil at the moment, started yesterday, to see if i notice any improvement.

      I know it is such a small inconvenience but I honestly get sick and tired of having to attend to down stairs so often.  A small problem for some and I know other people have so much more serious medical conditions but I never thought so much focus would be in those parts of my body lol.

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  • Posted

    Dear Julie,

    Hope you can get some relief soon, sorry to hear about your

    Bladder,

    The Vaseline does help a little, And there is no stinging ,

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    • Posted

      Thank you Lorraine.  I had a totaal hysterectomy when I was 35 so not having any Estrogen since then my bladder suffered.  I have gone back onto Vagifem everyday for 7 days and I am noticing a huge improvement in the bladder area when coughing and I have only been on it for 3 days.  Fingers crossed things tighten up again.

      I know it is such a small inconvenience but I honestly get sick and tired of having to attend to down stairs so often.  A small problem for some and I know other people have so much more serious medical conditions but I never thought so much focus would be in those parts of my body lol.

       

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    • Posted

      Good morning Julie ,

      You know, I know exactly what you mean,

      Where would we be if we couldn't laugh,

      I feel like I'm getting on everyone's nervous at home,

      Thank goodness for all you lovely people,

      And thank you, 😊

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  • Posted

    Hi Julie

    You said you have no itch? Lucky you, that's what drives me up the wall, is the itching. I first got the lesions from scratching, I didn't know what it was. Then I ended up with an infection in the area, treated that, then a biopsy confirmed it was LS.

    This was 6 years ago. Trying everything I read to see if it helps. So far Perrins Naturals Creme for me is the best. I have to make sure I wash after each toilet visit, that does help. I still use the steroid cream about once or twice a week. When I get itchy I just rub the area lightly over clothing, that helps. I don't want the lesions again. So I just grit my teeth and wait for it to subside. What we have to go thru really sucks.

    Have you had a biopsy before using any prescription creams? I'm really surprised you have no itching. As far as I know, itching is the first sign of LS. Wishing you lots of luck. Hope you find something that works for you. Good luck.

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  • Posted

    I have had wonderful luck with The Borax.  I understand it can be purchased on Amazon.  I use it in a small spray bottle, hot water and abput 1/4 tsp Borax, then shake shake ahake till it blends, no lumps I sift it first.  It will lst a week or so.  This is used after each trip to the bathroom and at night I apply a vasoline type goop to keep the area moist.  Good luck.  By the way I have constant bladder problems too.  Vitamin D complex seems to help that.  Good luck.

     

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  • Posted

    Hi Julie I have LS and at times it drives me mad I do use a steriod cream plus I use Hydromol emollient bath / shower wash and Hydromol emollient ointment as a moisturiser which I find very good, mostly it is under control but there are times when it drives me mad and I just don't know what to do.

     

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