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Just Diagnosed Lichen Sclerosis

Posted , 54 users are following.

Suean
Suean

Hi Last week I had a biopsy and 3 days later it was confirmed I have Lichen Sclerosis. Ihad never heard of it until now,and I still feel as though I know nothing about it apart from the horror stories that I keep reading about on the internet. I feel so alone as I dont feel as though I can talk to anyone about it (apart from my husband, who is poorly with Multiple Myeloma so I really dont want to add to his worries) I know there is no cure, but is a normal life possible? will I always feel as though I am sitting on needles?

I feel I should be doing something to make people aware of the condition, does anyone else

Regards

Sue

3 likes, 136 replies

136 Replies

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  • kina
    kina

    Posted

    I was diagnosed with Lichen Sclerosus 12 years age. I have been treating my symptoms with a steroid cream when necessary.I was admitted to hospital last week with a bleeding peptic ulcer and the cause was diagnosed to be due to Helicobacter Pylori. I have been treated with antibiotics and strangely haven't had a flair up of itching from Lichen Sclerosus since. It's still early days I'll keep you posted , but I wonder if they could be connected?
    • hanny32508
      hanny32508 kina

      Posted

      Yes, Kina, I have had the same experience - anti biotics stop LS in its tracks, however, only temporarily.  Sooner look in the direction of the use of baking soda.  Three pinches in a spray bottle, one that is used for after giving birth in the hospitals, and rinse with this solution after every bathroom visit. At first it is soothing and chances are that the LS calms down.  If you have lots of fusing, some of the fusing may 'melt'.  Sitting in a bath with one third of a cup of baking soda is also helpful.  (indeed, not too hot)  (I do that at present every other day)  Most recent observation of my LS is that it is clearly 'on retreat'.  

      Hope this will help you.

    • ChicaNZ
      ChicaNZ hanny32508

      Posted

      I remember reading an article about some stomach ulcers caused by Helicobacter Pylori being helped by eating active Manuka Honey.  What makes the honey so effective is tea tree oil - meleleuca alternifolia.  Baking soda baths and tea tree (manuka) oil with zinc and castor (am about to try coconut instead of the zinc and castor after reading these forums) topical applications make a big difference.
    • ChicaNZ
      ChicaNZ hanny32508

      Posted

      I remember reading an article about some stomach ulcers caused by Helicobacter Pylori being helped by eating active Manuka Honey.  What makes the honey so effective is tea tree oil - meleleuca alternifolia.  Baking soda baths and tea tree (manuka) oil with zinc and castor (am about to try coconut instead of the zinc and castor after reading these forums) topical applications make a big difference.
    • hanny32508
      hanny32508 ChicaNZ

      Posted

      Good to know that you have positive experiences with these topical applications as well.  We may be looking in the right directions for better treatment of LS.  
  • Jeepers
    Jeepers

    Posted

    HI. I've had LS for 8 years .

    Kina, do come back and tell us if you have beaten this awful disease.

    It could be the helicobacter which in your case aused your LS. I know a woman who had 6 weeks of antibiotics for something similar to Lyme disease, and her LS cleared up "almost "completely.

    Spindles, if you are worried about fusing closing up too much, I can recommend emu oil, or estrogen and testosterone from your gp, or use dilators....any or all of.

    It is possible with patience to reverse some of the fusing by use of the e. and t ..

  • Jeepers
    Jeepers

    Posted

    Hi Suean. Yes it is scary at first , till you can get a handle on it, and I do know the sitting on barbed wire feeling, but it will go away with use of your dermovate, though expect flare-ups every now and then.

    A good forum can give you much support and information and tips on managing it. Yahoo groups does a great one on lichen sclerosis. you need to apply to join and it is visible to members only.

  • Suean
    Suean

    Posted

    Hi Thank you all for youre replys ther is one thing I find worrying I believe LS doesnt go inside the vagina, but I have lesions that seem to be really close and the visible muscle is very red

    Best Wishes

    Sue

  • Jeepers
    Jeepers

    Posted

    Sue if they are "just inside" i.e. in the vulval vestibule rather than up in the actual vaginal canal, ithat is normal for LS ( not that LS is normal of course)

    Sufferers of vulval lichen planus get it in the vagina.

    You just need to keep an eye out for any strange lumps or bumps there though.

  • Suean
    Suean

    Posted

    Hi All Sorry if im a nuisance but Ive been using the cream now for 2 weeks and im reall y no better. worse if anything, very red as well

    Sue

  • Itchy_person
    Itchy_person

    Posted

    Hi again Joodie and everyone else in this discussion - regarding the antibiotics, my dr gave me antibiotics last week for my acne rosacea and my suspected lichen planus is a bit better. She said it might help, but she did not know what my rash on my arms, legs, chest and back was - I did not make the link to my diagnosed (2 years ago) lichen sclerosus until later that night and now feel sure that I have lichen planus. I wonder if antibiotics do help and if it will get worse when I stop them - will let you know.

    Liz

  • Spindles
    Spindles

    Posted

    When I used the Dermovate for a month or so, it made the redness a LOT worse and started to make it feel sore, something that I hadn't been having before. In the days when I had to use it every other day then a couple of times a week I used the nappy rash cream Sudacrem and it was much better. I told the consultant about what I had been doing and he told me to stop using the Dermovate and carry on with the Sudacrem and to only use the Dermovate for flare ups. Although I haven't been using the Sudacrem for a while I think it's actually better than the Dermovate. Perhaps it's worth a try.
  • Itchy_person
    Itchy_person

    Posted

    Hi Spindles, thank for your reply - I had tried sudacrem before I got dermovate from dr, but for me the dermovate was better. I don't like the thought of using it long-term though, so I've ordered Propolis cream as someone recommended that. Will post how I get on with that. The lichen planus is worse for me just now than the sclerosus, I thought it was getting a bit better but one arm got worse last night and this morning. I'm fed up trying to wear long sleeves all the time to hide it.
  • Suean
    Suean

    Posted

    Hi When I had my biopsy for LS would they pick up if I had LP

    x

  • Itchy_person
    Itchy_person

    Posted

    Hi Suean

    Sorry, I don't know if the biopsy would pick up both - I'm not sure if they are two separate conditions or if one leads to the other or whether if you have it everywhere, it just gets labelled as lichen planus. I never had a biopsy, the dr at Gynae just looked at it and said it was definitely lichen sclerosus. I had thought it was thrush and just went to the GP when it was never clearing with the canestan. For me, dermovate helped right away and was such a relief, I was also prescribed dermol lotion to wash with and to use as a moisturiser afterwards. When I've tried using shower gel it stings. As for the lichen planus, I've stopped alcohol, chocolate, coffee, tomatoes, cut down on bread and tea -I'm drinking boiled water or camomile or mint tea and eaten lots more fruit, veg, fish and chicken over the last week - upside being I have lost 2lbs and I was able to have a tepid bath today without it causing irritation for the first time in ages. So here's hoping what I'm doing is helping, I don't know if this can ever be beaten, but maybe it can be controlled to some extent. I hope you get some relief soon. Liz

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