New to Lichen Sclerosus. Very upset and looking for advice!

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I’m 20 years old and have just been diagnosed with Lichen Sclerosus. At the moment I am using Dermovate twice a day and Just totally unable to keep it under control. Just looking for advice or ideas of how else to improve it. In constant discomfort/pain and also a type 1 diabetic. Does different diets help? What wash products? 

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  • Posted

    I am Type ll Diabetic as well. Not sure if this has anything to do with LS. It would be interesting to research. Also I have Psorasis on my palms of my feet and hands that comes and goes. It goes  away in the winter. I use Clobetasol three night a week and Estrace the other three nights a week. You don't use together. This seems to keep it under control. However, if I get a bit of itching startingwhile I am home,  I immediately apply the Clob. Also  what helps is to cleanse yourself after urinating and a bowel movement , blotting yourself. with toliet paper  then cleansing with a wipe...never wiping.. just blotting.This can tear the skin since it is so thin. You want to use the frangrance free wipes for sensitive skin. I also get the wipes with Aloe. If I am away from the house, and notice a little itching, I will go to a restroom and pull out one of the wipes and cleanse myself. I think the Aloe calms it down. Also you will get fusiing in the vulva area, because the skin becomes so thin...making the skin fuse together. You will notice after awhile, that the labia (inner Lips) disappear and the clitoris does too. You just can't worry that this happens. A lot of women on this site also do sit baths using the Mule Team Borax Detergent. They say it works wonders. I think you mix 3 TB with warm water and soak yourself in it for 20-30 minutes a day.   A lot of other women say that cutting out sugar really helps. But being Diabetic, you probably already do that.   You need to see a Dr. that knows all about LS. Otherwise you will get a Dr. that knows nothing about LS and cannot help you manage it.  I found a Female Gyn one town over from where I live. It's worth it.  I only take showers and use either Ivory or Dove soap. Always rinse yourself very well....leaving no soap residue there. Pat yourself dry. If you need a moisturizer to use in the vulva area, many of the women recommend Emuaid   which I ordered online.


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    • Posted

      Deborah not everyone ends up losing their labia minora.  Some women do, but not everybody, I just wanted to point that out.  Also, not everybody loses their clitoris.  There is no correlation between fusing and thining of the skin.  They can both happen of course, but I don't believe there is any documented connection between the two. I just think you need to choose your words a bit more carefully especially for someone that young and new to LS. 

      "Also you will get fusiing in the vulva area, because the skin becomes so thin...making the skin fuse together. You will notice after awhile, that the labia (inner Lips) disappear and the clitoris does too. You just can't worry that this happens" 

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  • Posted

    At 20 years old, it's likely that you will have periods of remission from LS, once it is under control.  It varies in everyone but please don't fear the worst.  Every best wish.

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  • Posted

    Big help for me have been the baking soda and borax baths and rinses.  Plus added sugar free diet, no gluten, no alcohol, no caffeine, limited dairy.  (especially cheese is a trigger for me)  For moisturizing I use coconut oil. 
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  • Posted

    Hi Che  welcome to Team LS 

    I have had LS for nigh on 17 years now, with several periods of remission over several of those years 🙏🏻

    I am very sore you have been diagnosed with this sneaky painful condition which looks like this 👹 as 

    It can take a little while to get your mindset right to manage it

    That said once you have ‘ugly’ ‘under control,  and you will Che, it will be much less at the forefront of your being 😊

    From my own experience, and that is the only place any of us can speak from, cos we all have individual plans, I use Betnovate ointment (daily if a flare up ) as I found Dermovate/Clobetasol too intense and made it seem worse.  

    Also bought a portable bidet (cheap as chips off Amazon) and wash in Dermol 500.  I always dry my ‘Ladyship’ with warm air hairdryer prevents any tears. 

    I too use 20 Mule Team Borax only occasionally now as it can be drying which perpetuates the splitting.  I use 2 teaspoon to 3 litres of water in bidet.  Cleanse and dab whole area front and back, only have a little soak couple mins as the area is fragile and Borax is a laundry agent ! that works for lots of ladies. 

    I also use coconut oil as a moisturiser, love it 😊 

    Since removing dairy, sugar and red meat from my diet, which are all heating agents for the body, I seem to be enjoying long calm period 🙏🏻

    I go to a Chinese acupuncture doctor for well being too about once a month, and she told me about heat being a support for LS. and not being good is. 

    Well, I almost threw away me thermals 😉

    All the support you need is here , so let us know how you are sweetheart and don’t let anyone fob you off if you need more help from the medical fraternity.   

    Warm healthy wishes 🎄🎄

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    • Posted

      Hi Sedg. thanks for all the information. I tried different ointments as well, I found them intense at times as well so I went back to betnovate 0.5 dose. where do you get Dermol 500?


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    • Posted

      Hi Maureen 

      Think you can get Dermol range at most chemist.  Though, I now get Dermol 500 on prescription as I am over 65 (tho I am too young to be this old )😉 

      Quite frankly, the medical profession probably know as much now regarding LS as they did decades ago !! Sadly no research. 

      So, I know you will get sound advice on this forum.  directly from women who know exactly how you feel. 

      Take care Maureen 🤗

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  • Posted

    Hi Che, like someone said, you will likely go through periods of remission, sometimes for years.  It is a blow to get this at such an early age but if you make sure you are well looked after you will find you will be able to manage LS.  A vulva clinic is the best place to go.

    Some women find going gluten-free helps, myself included.  You could try eliminating gluten for a month to see if you notice a difference,  If not, at least you can rule out gluten as a trigger.  Sugar, unfortunately, is a trigger and so there is definitely a link between thrush and LS, the two tend to go hand in hand for some women, and so it is important to watch out for thrush symptoms.

    Spraying your undercarriage after using the bathroom is important too.  One other important thing is to use some kind of oil before bed which I believe helps to stop fusing of the labia minora.  You can use coconut oil, emu oil, any oil really that works for you.

    One last thing.  The Dermovate cream is good, it should get rid of the white plaques of skin, but you dont want to be using this indefinitely, I hope they have told you this.  The usual is something like twice a day to start with for perhaps a couple of weeks, then reduced to once a day, then reduce to every other day and so on.  There is no hard and fast rule, everyone reacts differently and so there will come a time when you will only use the Dermovate cream for emergency flare-ups.

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  • Posted

    Thankyou everyone for the advice! Sorry it's taken me so long to reply. Still trying to get my head around it all and doing my research. I have found that it's recently got a lot worse however I have an upcoming appointment with a specialist so hopefully she will have a suggestion on what to do next. Although I have found cutting out Gluten and dairy to be very affective! Even though it is a struggle, I love bread too much haha. But just taking each day as it comes and hopefully we will find a cure in the near future!!!

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