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Just Diagnosed Lichen Sclerosis

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

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  • dianthus

    Hi suean, I know just how you feel . Seen Gp yesterday and now waiting to see Garny. Like you I know very little about my condition and feel scared . I hope we both get some positive news soon .

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  • Spindles

    I was diagnosed with LS about six months ago. I didn't have any of the usual symptoms, just redness but I know that some people can have a lot of soreness and/or itching so I suppose I am lucky. There has been some fusing which I have been told can't be reversed and I am hoping that it doesn't get to the stage when I start to have trouble passing water etc. I had a biopsy and was surprised that even after that the doctor said that "it's probably Lichen Sclerosis", I thought the biopsy would confirm it once and for all. Thankfully he also told me that there was nothing sinister going on but that I had to get myself checked by my GP once a year.

    Before I had the biopsy I was treating the redness with the Dermovate for several weeks but I found that it made the redness much worse. I have now been told to just use it when I have a flare up but, because I don't get any soreness I haven't put any on for a while. I don't let it worry me but I can see that if you have worse symptoms than I have got it would be more worrying. Sorry if this hasn't been much help but at least you know you're not alone in having LS.

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  • kina

    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?

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  • Joodie

    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 ..

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  • Joodie

    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.

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  • Suean

    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

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  • Joodie

    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.

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  • Itchy person

    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

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  • Spindles

    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.

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  • Itchy person

    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.

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  • Itchy person

    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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  • Joodie

    Lichen planus and lichen sclerosus are different. The biopsies show different cell structures, though it is possible forthe same person to have both diseases, and some unlucky people ( women and men too) get other auto-immune diseases as well.

    I had LP on one leg, my body, one arm, scalp , nails and mouth but not on the vulva, and soon after that lot more or less went, guess what ? - I got LS on my vulva....yes, hit the jackpot !

    The main symptom difference in our private regions seems to be that LP affects the vagina itself, though the external appearances might be slightly different too.

    Whatever these things are called, they are just horrible.

    The Chinese have had some good success in curing/ getting remission using ultrasound.

    Sue, help yourself by bathing frequently in warm, not hot, water. It needn't be deep, just enough to sit in. Oil helps. I add few drops of E45 bath oil to the water. Don't use soap. No perfumed stuff.

    If you are getting burning or soreness when you urinate, pour or spray warm water over the area at the same time.

    Pat dry or blow dry. Protect the sensitive skin with a thin layer of vaseline after you are completely dry.

    Give your underwear an extra rinse after washing.

    Tell your hubby how you are feeling. You need his support.

    It is hard to cope with this by yourself and friends can be embarrassed.

    Take care all.

    Joodie

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  • Itchy person

    Hi Joodie

    It sounds like you know a lot about these conditions - 10 years ago when I had my smear test done, the dr said that I had an erosion on my cervix and I bleed during smears so she thought it may come back abnormal which it did. I had to go to the hospital gynae for another which thankfully was normal and has been since. I'm now wondering if the "erosion" was a sign of the LS or LP? Can I ask if you or anyone else you know with these diseases have had to give up work? That's my fear, in case it gets so bad that I can't work - I seem to be getting a bit of relief from it just now though. x

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    • Twigs »Itchy person

      Hi,

      I have only been diagnosed in the last few months and have been left up in the air since diagnosis so I have requested a talk with the consultant who diagnosed me - 30 April then got appointment with my Dr 1 May so I can be clear what I should be doing etc. interesting though I too was diagnosed a number of years ago with an erosion that they said would go away with the change. I have also been told from a recent smear that I have thinning of skin in my cervix which I will mention to the consultant as I have a sneaky suspicion it is due to Lichen. Sorry you had to give up work.  I asked for epiderm cream to wash with as a result of this forum and it has helped, as too making sure to keep clean and dry after weeing.

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  • Joodie

    Hi Liz.

    I have learned a lot about this disease from the internet and from a large US based forum.

    I think the experience, tips, information and advice pooled by sufferers of LP and LS are often more valuable than what some of the medical profession can offer.

    To me it is a skin disease anyway, and not actually gynaecological, but in the UK there is a shortage of dermatologists, though not apparently for botox etc!

    I've never heard of anybody having to give up work because of it, but I have heard tales of endurance. Even sitting at a desk all day can be intolerable, especially in a flare-up, but such is the private and very personal nature of this affliction that sufferers don't like to chirp up about it ,and suffer in silence.

    Your lesion 10 years ago - well, many have said that after being diagnosed they have wondered if they have actually had it for a long time, so you never know - nor will you now, but you do know that with smear tests abnormal ( pre-cancerous) cells are often found then later they have gone. Our bodies are constantly being infected by organisms and fighting them off.

    Nobody there has ever mentioned getting LP on their cervix, though many are distressed about their sex lives.

    I am lucky as I had a hysterectomy for early stage cervical cancer when I was in my thirties....I am retired now - lucky because it was discovered when I was having another problem investigated so it was caught early, tg.

    I think you are managing yours from the sound of it, but as you no doubt aready know it can suddenly come at you again from left field as they say.

    You take care. x

    Joodie

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  • Suean

    Hi Jodie Thanks for your reply its really helped I take a short bath every evening when I get home from work, ive also started using the clob every other day and things (dare I say ) seem a little calmer. Im still having the occasional wobble and sit and have a cry

    but is all still very new

    Thanks

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  • Joodie

    That's good, Sue.

    I don't blame you having a cry. It's an unkind disease to put it mildly. I've had it for about 9 years and I still can't quite believe it. You couldn't make it up, could you?

    Try to stay in the bath for at least 10 minutes till the water turns tepid.

    Big HUG for you and anybody else who needs one. x

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  • Suean

    Hi Joodie How old were you when you found out you had it I was 60 last month but looking back ive probably had it for about 3 years I had my thyroid removed about 4 years ago so im thinking this may have some connection.

    I dont know how anyone would say they had LS if they didnt, I wouldnt wish it on my worse enemy

    Thanks for replying it helps alot

    Sue

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  • Joodie

    Hi Sue. You are a mere Spring chicken, lol. I am 74 years old. I was about 65 whenbI got this LS and I'm pretty sure it is connected to the hormone drop coming off HRT. Mind you at the time I had been going to the gym and suspected I had picked it up there. It's amazing what goes through your mind when you are alone with it and don't know.

    I would say your thyroid removal is connected all right. Others are always saying their LS or LP is connected to hypothyroidism and synthetic hormones. I read somewhere that LS sufferers have a one in three chance of having underactive thyroids. At least you don't have to worry about that one now.

    Any kind of hormone change is highly suspect.

    Yes, LS is the pits all right. I remember discovering it might be for life and being utterly dismayed.The only good thing about it is that it teaches you to do a stylish sort of cowboy walk, lol.

    Seriously, it is horrible to be alone with. I got/get support from yahoo groups lichen sclerosis dot com. It might not be your cup of tea but it's more private than here , and has lots of pooled knowledge ( but no cures, sigh )

    You will gradually find the best way to cope with it, Sue. You are making headway already. Life will still be sweet, promise.

    Take care.

    Joodie.x

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