Male with Lichen Sclerosus - chest, back, arms and groin.

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I am at my wits end.  I have been diagnosed with Lichen Sclerosus and it has spread significantly and rapidly over the last year.  I have multiple patches on my back, chest, arms and groin.  The itching is intense at times, annoying almost all the time.  Dermovate and Neresone has not helped.  Protopic has not helped and I believe has worsened the spreading?  I have been prescribed antihistamies by GP but they don't even take the edge off the itch.  Dermatologist just says "it might clear up, keep applying the dermovate".  She doesn't seem to be concerned about the rate it is spreading.  Going back to GP about the itching next week.   I can't enjoy anything at the moment, even sitting and reading a book or watching TV due to the itching.  I have a constant worry about the spreading - where will it ever stop?  If ever.  This is a living hell.  Anyone else here suffering it with it in the same areas as me?    

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  • Posted

    What helped me most was the regular baking soda baths (1/3 cup per bath)  in which also a few drops of tea tree oil.  Plus of course diet - cut out all sugar to start with.  Then check for instance gluten and dairy products (cheese is a sure trigger for me)  
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    • Posted

      I am going to buy some baking soda today and try a bath tonight with it.  Here's hoping!  Thanks for the reply.
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  • Posted

    Hi andew sorry to hear you have this horrible condition to deal with as well,i also have patches all over my body,neck. breasts, side, back, stomach and also the tops of my legs,nothing seems to help these areas and the dermatologist i see has no interest in these areas as she said "they are not classed as pre cancerous and nothing really helps just keep applying moisturiser"!! i use E45 oil in the bath and wash with Dermol which does help with the dryness.(Dermovate only seems to help when i have splits and sorness down below ) i also have found these patches spread very fast and also wonder if it will ever stop.the only thing i can say is some of the first patches  had have faded now and just leave a scar rather than the white dry patches or purple sores which isent great but easier to deal with.Its a very stressful condition to deal with and apart from this site there is very little help or information out there.i hope you find someting that helps.I am working on cutting out sugar etc, i need to cut back on the wine also rolleyes and see if this helps. 
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    • Posted

      Thank you - it is really interesting to hear from someone else who has patches on their body as well as in the "usual" places.  Sounds like you have it in similar areas to me.  I have one small patch on my neck that doesn't seem active  and like you, some of my first patches have faded, but still itch.  Every day I seem to find new small red blotches and over time these develop and grow into red/purple shiny areas.  I just live in hope that one day it will stop spreading.  I don't have any on my face or lower arms yet so thankfully I can cover up the really unsightly areas - but I don't think I'll ever go swimming in public again - it is so embarrasing being covered in all these rashes!

      I hope you also find some relief soon. Good luck.

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  • Posted

    I find emuaid very effective for itch relief. Expensive but worth it.
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    • Posted

      Thank you Sandra, I'm going to try the bathing with baking soda tonight.  I'm still very new to this forum and all the research - I have seen that name emuaid before.  Going to see if it's available in the UK.  Thanks for the reply.
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  • Posted

    Sorry I do not have it everywhere only on my undercarriage but I have minimised mine to almost nithing with daily care and change of lifestyle I no longer eat gluten I took pro biotic for a year and now on occasion I apply witch hazel then pat dry then apply aloe Vera gel every time I use the restroom then apply 45,000iu vitamin E at night hope that helps
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  • Posted

    Well folks I've just tried a baking soda bath and I had to get out as it was stinging.  Not the areas of lichen sclerosus on my back, side, chest etc, but other clear areas of my skin.  I was sparing with the baking soda so not sure what is wrong.  

    I am so depressed now as I was hoping that was going to bring relief.  All my patches went very red and visible,  yuk!  

    I showered down with "simple" shower gel and have moisturised.  

    The itching is still there.... 

    Started cutting out the sugar yesterday.  I know this will be a very long process but getting a bit desparate tonight....  it seems to have spread even more although I probably just noticed it more tonight. Seems to be spreading down my left arm now. 

    Thank you for all the responses though, I am most grateful.  Am I the only male on here?

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    • Posted

      Thank you Sandra, much appreciated.

      I am 34 and live in the UK by the way.  I never properly introduced myself.  

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    • Posted

      Just a question:  Did you use baking soda or baking powder.  There is a significant difference.  

      And yes, it is a long process.  The beginning is often very discouraging.  Hang in.  

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    • Posted

      I've had psoriasis outbreaks on vast swaths of my body. I tried splashing on fridge-cooled aloe vera juice for one summer. I think the sugar deficit will help soon.
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    • Posted

      Thank you!  I'll keep up with cutting out the sugar.  Now taking tea and coffee without sugar, and have started to cut out all ready meals and anything I can see that has a high sugar content. Staying off the cookies, chocolate etc and let's see how it goes!
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  • Posted

    hi Andrew , sorry to hear you are suffering so much !. I have a really awful patch on my hand , which is hell ! I really feel like ripping my skin open it is like poison ivy ! Never experienced an itch like it !. But the main area is in my lady bits !. About 2 weeks ago I started drinking raspberry leaf tea and while I drink it it kills the itch dead for me . But also on my hand I use aloe Vera (organic ) gel and that works well too . We are all different and mine is quite mild . I found that the baking soda burnt me !. I know this sounds stupid but mine can be quite well behaved , then when I think about it , it seems to kick in strange !. You might benefit from relaxation !. I also live in uk !. Where a outs are you ? Jackie .
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    • Posted

      Thanks Jackie, yes the baking soda seemed to aggrevate my skin.  Need to experiment more with that I think!  I have been very very stressed recently (well last 3 years or so to be honest!) I am convinced this has contributed to the spreading of the condition.  

      Raspberry leaf tea - will give it a try.  Can't hurt! 

      I am in Warwickshire - you? 

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    • Posted

      Hi , I have been under so much stress over past 3 years too !!. Stress is bad for your skin in general , eg eczema . And apparently eczema is the under lying part of Ls . Do you just have it on your body ? Or your private bits too ?. I know a lot of people on this site are female ! But there are a lot of males with it . It will settle , don't try too many things together as it seems to cause a detrimental effect !. I saw a new Dr last week as my original Dr as gone on maternity leave . I sh*t my self when I saw him ! But he was brill !. He did things very different to the other female Dr . He really listened to my questions and answered them . I could not seem to get any answer's any where about the vagina narrowing !. Know it doesn't involve you as a male . But for all the females reading ! It is so important to get the condition under control as it works by corroding your skin , chipping away at it till it narrows !. This freaks me out !. Mine is behaving at the mo , but I have booked to see a lady that does homeopathy on Monday and she will tell me if she can help with it . Hope so ! Will let you know . Try the tea . I find a part from steroid ointment my skin seems better with plain water to wash in . But apparently yes products are brill ! Check them out also . I am in Derbyshire not far away . Keep trying things , Jackie .
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    • Posted

      artificial sugar is worse than normal white or brown so don't eat anything with it in ! 
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    • Posted

      aww ! You are the first person with with Ls ! That I know that lives near to me ! It makes you feel better as with not knowing anyone else with it  it's hard to talk to anyone about it !. Do your friends support you ? Or do you keep quiet like me ! About it . Are you still itching bad ?. Have you tried anything else ?. Jackie .
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    • Posted

      Hi , was looking at other messages and remembered about the natural sugars !. Xylitol and stevia are natural and safe to use here in the uk . You can get them from Holland and Barrett . Also reas a bout people using calamine lotion on Ls on body ( for the itch ). I remember my mum putting it on me when I had chicken pox !. It's very cooling and worth a try ! It really calmed the itching down . Good luck , Jackie 
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    • Posted

      My closest friends and colleagues know I am suffering from a "rash" that I tell them is an "auto immune condition".  I don't tell them the name incase they google it and it would be then embarrasing!  I'm still itchy but I'm living in hope after a feew more days on a greatly reduced sugar intake that things might start to improve!  I tried some cream from Holland and Barret yesterday called "Blue Ease Cream", as I saw it contained emu oil and aloe vera which I read had helped a lot of people.  However this burnt very strongly and I had to wash it off!  
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    • Posted

      hi , keep trying , will let you know if I come across anything else . I have told my sisters and my mum , but told my friends I have ezema . Jackie
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