1. Community
  2. Women's health
  3. Lichen Sclerosus

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

Posted , 12 users are following.

This discussion has been locked due to a period of inactivity.
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

59 Replies

Prev
  • Chrisy
    Chrisy andrew2527

    Posted

    Try a different type of anti histamine. There are several types on the market which use different medicines. Good luck x
    • andrew2527
      andrew2527 Chrisy

      Posted

      Thanks Chrisy - seeing my GP on Friday and I was going to ask him if there is anything stronger or a diffrerent type I could try.
    • Chrisy
      Chrisy andrew2527

      Posted

      They are really cheap to buy if you are UK and have to pay for prescriptions. Less than a pound in someplaces. Loratidine or cetrimide hydrochloride are just a couple.
  • andrew2527
    andrew2527

    Posted

    What's the general feeling here about using artificial sweetners (Canderel etc in UK) for tea/coffee etc?  Going to also go to decaff coffee, as I'm open to trying anything at the moment!
    • Morrell1951
      Morrell1951 andrew2527

      Posted

      I'm still having two cups of coffee a day with two spoons of sugar in them. I also drink two 5 oz glasses of red wine. When my LS was acute – even infected – I'd been eating great slabs of chocolate and when I ate in a restaurant I had big sweet desserts. Just quitting thobig doses made a huge difference for me. Artificial sweeteners have their own set of problems. I used them for years, then realized it was even worse than sugar, but for different problems.
    • andrew2527
      andrew2527 Morrell1951

      Posted

      Thank you, I'm working hard on cutting out junk food at the moment and sugar with breakfasts, tea, coffee etc and big slabs of chocolate and deserts too!  My downfall also! 
    • Chrisy
      Chrisy andrew2527

      Posted

      Sweeteners were given a bad press many years ago which was traced back to the sugar industry who obviously worried about loss of business. It is now believed that they are safe and the more recent plant based sweeteners are recommended. It is still recommended that you change types of sweetener so that you do not ingest too much of one. My father used one type for 35 years and had no problems.
  • andrew2527
    andrew2527

    Posted

    After my visit to the GP today I'm a little disappointed.  Apparently I am already on the strongest antihistamines he can prescribe....... but he has upped them from 120mg to 180mg.  I'll see if that helps.  He suggested anything else was out of his hands and I should speak to my dermatologist again.  Ever feel like you're going round in circles?!  Next dermat appointment is in 2 weeks.  I'll update after that.

    Thanks again for all the advice and positive comments.

  • Chrisy
    Chrisy andrew2527

    Posted

    I hope that works. If not try a different type. One may work better than another. My daughter used the chlorapheneramine from the GP but found the cheap ones from Wilko worked better. Good luck
  • sue49824
    sue49824 andrew2527

    Posted

    I'm so sorry to hear of your situation Andrew and my daughter also has LS and we are being very supported now in this group. Just reaing the other posts is useful. My son has autism and he also has a rash - that has been severe at times to the point where the GP thought he had blood poisoning- in patches on his legs- lower legs in particular. No one ever has diagnosed it prperly and we have seen at least 2 specialists! It looks like lichen planus to me when I googled it as it is raised, looks like lichen on a tree shape and has a slivery, papery finish on it in certain lights and his skin looks very dry and scaly. It is interesting that both my children have either LS or LP and I have ezcema myself. My son's is quite sore on his lower legs but he has had it worse and I wanted to reassure you that it can go into remission sometimes. He has always had to follow gf df diet as he is autistic and has a sensory thing with applying cream with a load of freaking out. So I have my daughter freaking out in one room about her LS and he is freaking out in the other room as I'm trying to persuade him to put some cream on to moisturise it. We have found some relief from good diet, probiotics and exercise but not had any good advice from the docotrs!! Don't know what cream to use and they are scared or making it worse. We are also in the northern part of the UK and would urge you to change your diet to include as many wholefoods as possible more veg than fruit. Coconut oil on your skin in the bath or cocoa butter melted in bath is really nice and soothing. Avoid shower gels and stuff like that go to H&B and look at their Allergy range. Good luck.
    • andrew2527
      andrew2527 sue49824

      Posted

      Thank you for taking the time to reply and I am also very sorry to hear of your situation and I hope your children find some comfort soon. It's so stressful, I can't image how you are coping. Thanks for the tips. Good luck.
  • andrew2527
    andrew2527

    Posted

    Hello folks. I really feel I've had more advice on the last few days here than in the past year from my dermatologist and GP so thank you. I've managed to get a sooner appointment for this thurs with my dermatologist because I'm really freaking out about the speed at which the LS is spreading all over my body. Patches coming on my arms now. I'm going to ask if it is worth seeing an immunologist or if there are other tests can be done. I just want to know how to slow it down or stop it spreading. I can't work out why so few people have it on their bodies. Sorry to go on and on, I just feel so depressed right now.

    However still continuing with the greatly reduced sugar intake and not quite so itchy today. Just about bearable and my non LS skin seems better, clearer. So I shall carry on.

    Thanks for all the support,I feel I've made a few virtual friends. I hope it's ok to keep writing here, I find it helps.

    Thanks.

    • sandra01720
      sandra01720 andrew2527

      Posted

      We want you to keep writing as long as you need support. And once you have gotten answers let us know, so we can be enlightened. Most of Us have been desperate and depressed about our LS at some point. This forum is a great comfort to me and I have gotten lots of help on here.
    • Morrell1951
      Morrell1951 andrew2527

      Posted

      Definitely stick around. It sounds like you may have turned the corner.
Back to top
Prev

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.