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

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andrew2527
andrew2527

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?    

1 like, 59 replies

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  • andrea58721
    andrea58721 andrew2527

    Posted

    That sounds awful. I hope  you get relief soon.

    I had it on my neck first, but it never posed a problem. It's just there.

    In my experience dermatologists aren't much help, Andrew. All they know is the cortisone. Whereas if you look around this site, you'll find that lots of  people are getting some relief from changing their diet and their stress levels. Have you considered visiting a naturopath?

    All the best!

    • andrew2527
      andrew2527 andrea58721

      Posted

      Thank you Andrea, I have just been browsing the site tonight for the first time, and I see that sugar comes up quite a lot and stress.  I'm going to work on cutting out sugar where possible straight away.  And well... stress!!  I have been through several particulalry stressful periods over the last 3 or so years and this does certainly co-incide with the development of the condition.  The more I think about the condidion, the more stressed I become... I need to work on that.  Thank you for the reply.    
    • Morrell1951
      Morrell1951 andrew2527

      Posted

      Good, Andrew. That's the best and fastest course of action. Most of us here went through a period of freaking out after the diagnosis.
    • andrea58721
      andrea58721 andrew2527

      Posted

      Most welcome. I agree with others that sugar is key. My body is also sensitive to dairy, wheat and flour (which enters the blood stream as sugar - pasta, regular breads - try corn or rice thins which are puffed and therefore considered a whole food). Try to drink plenty of water. That flushes the system of toxins.

      Here's to quick improvement!

  • joey20961
    joey20961 andrew2527

    Posted

    Interestingly, I have seen many people on this site and others bring up how cutting out sugar helps. sad but true..lol! have you heard of emuaid? it's an all natural antiseptic..im also starting on the protropic tacrolimus, don't know if it's helping much i have it vulvar region. seemed more itchy actually. guess that doesnt hurt though as it is an auto immune blocker? i am totally stunned no doctors have come up with any real cures sad
    • Morrell1951
      Morrell1951 joey20961

      Posted

      I've been on tacrolimus for a year. It finally doesn't burn any more.
    • andrew2527
      andrew2527 Morrell1951

      Posted

      I found the tacrolimus made the itching worse but didn't encounter any burning, however I was using this externally on my back and chest.  I didn't see any improvment after a couple of months using it.
    • joey20961
      joey20961 Morrell1951

      Posted

      yes, i think this would be better for what may be happening with the immune system attacking itself, i do notice it irritates a bit but im only on day 3 and it is only the 0.03 %
    • Morrell1951
      Morrell1951 joey20961

      Posted

      Whether steroid or tacrolimus, they take many months to really work, so at early stages it's likely some temporary reaction, although there are people who don't tolertae some drugs, of course.
    • joey20961
      joey20961 Morrell1951

      Posted

      thats true, while on the clobestol however i noticed my perineal area skin appeared thinner and intercourse resulted in it retairing, so the steroid is by far more reactive. i am not sure about the tacrolimus, time will tell. i just applied grape seed oil tonight i hope this may help. it's all about experimentation at this point
  • Guppy007
    Guppy007 andrew2527

    Posted

    How awful!  You need to cut out sugar immediately...that's the root cause, trust me on this, many of us have found from our own experience this to be the cause of discomfort and itching.   Look carefully at what you are eating, cut out all sugars and I am almost certain you will see some improvement...fast!
    • andrew2527
      andrew2527 Guppy007

      Posted

      Thank you for the reply, I am trying starting today, to cut out sugar where possible.  I do have a lot of sugar, lots of cups of tea etc with sugar.  I'll let everyone know how it's going.
    • andrew2527
      andrew2527 Guppy007

      Posted

      Hi, I've managed to cut out about 70% of my daily intake of sugar since my original post. so far the itching had not improved. How was it for you? Pretty quick till you saw an improvement or several weeks? Thanks, appreciate all the support on here!
    • Morrell1951
      Morrell1951 andrew2527

      Posted

      Well, hard to say whether 30% of what you used to eat isn't still too much. It's been barely a week, so although this often works faster than the drugs, it's not instant. Are you eating more than three servings of fruit a day? You can't get away with piles of fruit. One of my servings is unsweetened blueberry juice, about one finger in a glass of fizzy water. In the bad old days i was eating three bananas a day plus pears, mangoes, etc. It's still sugar.

      If you have no improvement after two weeks, you might want to experiment with dairy, especially if you drink glasses of milk.

    • Guppy007
      Guppy007 andrew2527

      Posted

      A week of avoiding sugar is not long, you have to give it much longer and be careful of some carbohydrates (like jacket potatoes) which turn into sugar once consumed, its not easy at first, but I do believe if you are really strict, and that if sugar is your problem, you should see some results in a month.  If not, then you are one of the unlucky ones, and will need to look at dairy and gluten after testing for sugar. 

      Its probably worth mentioning that I had a severe case of candida last year, caused by consuming too much sugar.  There is a correlation between Candida and LS (Google for info) and so it is important that you are free of it.  It was easy enough for me to visualy diagnos as I had it vaginally and orally.  Take a look at your tongue, if it looks fine then you are probably okay, but if it looks grey and coated, you may have candida which is is a serious problem, and a HUGE trigger for LS flare-ups, and so you will need to eradicate it if that is the case.

    • andrew2527
      andrew2527 Guppy007

      Posted

      Thanks for the replies, really appreciate the advice.  I'll continue with cutting out sugar and see how it's going after a month.  Had a dentist appointment the other day and he said everything looked healthy so I think I'm ok on that side of things.  I was hoping fruit would be ok as I do enjoy fruit.  I'l keep experimenting over the next month or so.  Dairy next. I've tried soya milk before and quite liked it so that would be ok!
    • hanny32508
      hanny32508 andrew2527

      Posted

      Let's see how it is over a couple of months and even half a year.  My experience is that it takes at least a year to see any solid difference.
    • Guppy007
      Guppy007 andrew2527

      Posted

      Great, remember to give it a full month before cutting out Dairy, otherwise you won't know for certain what the real problem is.  And you are probably going to be better off with homemade Almond milk, (or shop bought) than Soy, its just that Soy is a well-known allergen.
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