Lichen Sclerosus on body

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Hi, i was diagnosed with LS about 2 years ago when i was 18. I have it all over my body, it started on my chest, and now its on my back, legs, arms and stomach. I didn’t have any in my vaginal area until a few days ago. Its a rare disease already but having on your body it pretty rare, I haven’t really read about many people having it on there bodies. My dermatologist just gave me cream (which doesn’t do much) and pretty much said good luck. Im trying to find a new one, it takes a long time to get into a dermatologist here. I had a huge flare up on my back, it peeled and become a big blister, to the point of a second degree burn. It was one of the most painful experiences ever. My Lichen gets bad in the sun/heat. In the winter I don’t notice many white spots but ill be out in the sun for a few hours and I have white spots everywhere on my back. My derm said Lichen could be heat related somehow but he’s not much help. I would really like to know if anyone is going through the same type as me, with it on there bodies. Also did anyone travel out of the country and then have Lichen after they came back, I went to Africa and I noticed my Lichen a few months later. My Naturopath thinks there could be a link with traveling.  

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  • Posted

    Hi Kaatie. 

    I really feel for you, having LS at such an early age and all over body. My problem is just in the vulva area, and that’s bad enough. Best thing I’ve done so far is stopped eating yeast and taking a probiotics. If you read all the chats on here, there is no specific thing that triggers LS. But the common themes are under active thyroid, Vitamin D defecency, leaky gut. Unfortunately LS suffers will not know till more research is done 😢

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  • Posted

    OH my gosh, honey! I'm so sorry.  I"ve traveled to Egypt but not in years so I'm not sure that in itself might have been your trigger. BUT travel does involve stress of new things.. AND foreign food (foreign to our own gut).  I know my own daughter got ill after we visited Singapore and Thailand. I can't get over that feeling there was a connection years ago (I"m 72 now). 

    I've recently been adding to my study on how I got to this point and have come to realize the path back from here goes generally like this:  LS (an autoimmune disease) followed a Vitamin D deficiency and Magnesium Deficiency with caused Leaky Gut Syndrome > which was caused in part by adrenal stress and other trace mineral deficiencies > which was caused by a lack of absorbing nutrients  caused by a Candida overgrowth that was caused by an impaired liver-lymph immune system.... which seems to have been affected by some mixture of loads of parasites, virus, fungus, worms and or other environmental and or chemical pollutants. 

    Our skin, the largest organ of our body, is a major outlet for our livers "overflow" when they can no longer handle the degree of toxicity they are processing.  we can back out of this. parasite and liver cleanses. but do slow so you don't get ill from the die offs.   Functional Medicine seems to be the new term for those who have studied these interactions and who can help us, whether they start as MD's or ND's (naturopaths). Holistic and Integrative are other terms for those who MIGHT have developed an indepth understanding.   Help this helps, Kaatie

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  • Posted

    I have LS in the vulva.  LP in my mouth.  And a still unidentified skin disease on hands and feet, but not all over my body.

    ​What I do to keep all under control and prevent it from becoming worse:

    ​Diet (no added sugar, no gluten, no alcohol, no caffeine, limited dairy)

    ​Baking soda or borax baths (1/3 cup baking soda or 1/6 borax in a full bath)

    ​There is more I do for the vulva and mouth, but I mention these two things thinking that they might perhaps be helpful to you.  


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  • Posted

    Hi Katie, are in you in the UK? If so, I recommend a lady dermatologist, famous for being on a TV show. PM me if you want the name.

    I've just seen her today and she has completely contradicted everything my GP has said. All my 'architecture' looks perfect, especially for a woman of my age. No signs of there having been any LS and she thinks my itching, which was never around the vulva( GP didn't listen to me), is seborrhoeic eczema which I have patches of on other parts of my body. 

    I'm shocked that my GP could have got it so wrong because the photos you see are pretty obvious. Another snippet of information, that may be of help to someone else and which I think is what confused my GP, we have little sweat glands all over the area and they can become more prominent as we age but they are not an issue and nothing to do with LS. Look up 'Prominant sebaceous glands'. 

    If you can get to see a dermatologist who specialises in vulval conditions I would do it. It has cost me £220 and a morning of my time.

    Also she confirmed that the condition is linked to oestrogen insufficiency.

    Best wishes :-)


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  • Posted

    Hi kaatie44, I am a male with LS, diagnosed 7 years ago [could even have had it in my childhood].  However, unlike most women, all the men seem to report nowhere near the trauma that the majority of women experience with LS.  Your's seems to be even a more extreme reaction to the condition.  I have been reading the Women's health / LS discussion forums here to pick up advice and ways forward to share with others with the condition.  Here are my comments on your situation: -

    > I wonder whether it actually is LS you have and whether you also have a severe dermatological condition going on?  Is it possible for you to get to see an LS specialist?  Or, a senior dermatologist who has a great deal of experience with the entire range of skin conditions, as you may not have a precise diagnosis.

    > Are you using soap, shower gel / skin lotions?  I am wondering whether you wash your hair in the shower?  Basically, I would suggest you need to keep all soaps / gels / hair shampoo, every day skin lotions / creams etc from ever getting anywhere near your skin across your entire body.

    > Clothing, are you wearing pure [100%] cotton, and perhaps you would also benefit from cotton that has no dye added for colouration. I would further suggest you wash all your clothes [do not mix them with other people's if you are in a shared house] in natural soap flakes, only.  You can get this at most large supermarkets in liquid form so that you can use it in the washing machine.  If the clothing touches your skin, it needs to be washed in this way [pretty-much, all of it I would suggest!].

    * I would also strongly recommend you try going, systematically, through the dietary advice, vitamin and other dietary supplements, as well as trying the things that have successfully greatly alleviated the impact on the skin that other women have proved has worked for them.  Obviously, as your's is widespread, only apply anything to the skin on a very small area to start with, in case you get an adverse reaction.

    I hope there are 1 or 2 pointers there for what you can do .....

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