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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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    • shezbut »dianthus

      I was just diagnosed with LS last week also, my mom had vulvar cancer and they think she had LS and let it go. I went to gyn because I thought I had a severe yeast infection, that is when they diagnosed me with LS. I am on a steroid cream. I am new also and scared!

      _ 0 votes F Report Share < reply to shezbut

    • Morrell1951 »shezbut

      Hi Shezbut,

      So glad you found us. You've posted on an old thread (one of the topics whizzing by at the top of the page, maybe), but please come to some of the ones that are active. We're finding out so much that we can do on top of the standard (necessary) potent steroid ointment. We use only a miniscule amount of it and LS skin (thick with mostly dead cells) needs thinning, so most of us have stopped worrying about side effects and are concentrating on lots of positive things we can do to improve the resluts of treatment. Now that you're under a Gyn's care, you're not going to get cancer there, so nothing to be scared about.

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    • Morrell1951 »shezbut

      Just scroll to the top of this page until you see in orange text

      "Home  > Discussion Forums > Women's health > Lichen Sclerosus"

      Click Lichen Sclerosus

      At the top is the banner displaying moving topics. Ignore those and scroll down.

      The first discussion topic is New to LS – Start Here 'pinned' at the top so new users can get the basics right away. We all got a lot out of watching Dr. Goldstein's presentation. This is not one of those slick 'webinars' by TV 'doctors', he's just an American gynaecologist who specializes in vulvar problems and has made a special study of skin diseases there. It takes about an hour. The charts are a bit tricky because the animated pointer isn't pointing at the things he's naming, but one woman here paused it and did screen captures of them and printed them off to show her clinic's presonnel.

      Below that is the list of discussions in descending order of most recently active. In the top half-dozen discussions you'll meet all the women who are currently active here. We answer questions very promptly. It's incredibly good support, considering most of us don't feel we can talk about LS to almost anyone else.

      LS is turning out to be extremely wide-ranging in its aggressiveness, but one common factor is stress. We all seem to have 'interesting' histories and lots of ups & downs. We're all frustrated (including Dr. Goldstein) that potent steroid cream is all we have, but the more we share here, the more things we find we can do to supplement the standard treatment to reduce the number and severity of flares.

      If you're very young, and particularly worried about sex (most of us are past menopause because that's where LS usually strikes) you'll find a few discussions as you scroll down posted by a young woman specifically to find fellows.

      If you have a long list of auto-immune disorders and are trying to get to the bottom of the whole thing, you can try Alternative Medicine. (There's a link in the New to LS – Start Here topic.)

       

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    • shezbut »Morrell1951

      Thank you so much for information!  I am remembering that I was diagnosed around 25 years yrs ago with skin lupus. I had a butterfly rash on my face. Dr. had me on steroids, and it has never come back. wondering if this could be any connection? What does everyone use for cleanser when it is inflamed

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    • Morrell1951 »shezbut

      I use plain water. Many use Hydromol. We're all starting to think there are lots of connections. I was diagnosed with Herpes simplex II at age 22, which happen to be around the time LS symptoms started. Either I was misdiagnosed or the acute outbreak of herpes triggered LS. Another member here mentioned the identical history. I never would have thought about it, forty years on. Anyway, I've never had genital herpes again. I also have psoriasis, which is 'related', whatever that means.

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    • ChicaNZ »Morrell1951

      Me too re the herpes and age of diagnosis!  Have only just had the LS diagnosed at age 49 and the doctor seems to know very little.  I have to go back a week on Tuesday for a biopsy to confirm that it is LS.  

      I had a really bad time with what the doctor thought was thrush the year following my 2nd daughter's birth (age 40); this gradually subsided.

      Now age 49, menopausal, in a new stressful job, just after a really bad bout of IBS, I am having another really bad flare up. For the first time ever after years of similar symptoms on and off, a doctor has suggested it could be LS. After using baking soda baths and tea tree oil mixed with zinc & castor oil and making sure I have enough sleep, the flare up seems to be under control though not abating entirely.  I now have a cold too which I don't think helps!  

      _ 0 votes F Report Share < reply to ChicaNZ

    • Morrell1951 »ChicaNZ

      Glad you found us Chica. Thrush and IBS don't surprise me at all. I've taken most of the sugar out of my diet, so I hope I've seen the last of yeast. And anything that gives me urgent, loose BMs (coffee and maybe also strong black tea) wreaks havoc on the skin around my anus. I've suspected for years that my mother's rheumatoid arthritis was set off by her IBS. At 86 she's found that coffee makes her 'go'.

      What form does this zinc take? Back in the seventies when I was briefly a hairdresser, we used some sort of zinc-based dandruff shampoo that made me want to scream – my hands were always cracked from psoriasis (another ailment than sometimes goes hand-in-hand with LS).

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    • ChicaNZ »Morrell1951

      The zinc and castor oil is sold as baby nappy cream here.  It is made of castor oil, arachis (?) oil, beeswax white, zinc oxide, vitamin A palmitate,cetostearyl alcohol.  It's really thick and lies on top of the skin.  I've tried food grade, 100% pure coconut oil instead today, mixing it with a few drops of tea tree (manuka) oil and I much prefer it.  It seems to be working fine as I'm just about symptom free - just a bit of tingling and tugging on a healing lesion - without the squelching.  My anus is heaps better too.  It's only one day so I'll keep you posted.

      My mother has rheumatoid arthritis too. 

      Many years ago I had shingles on the left side of my waist.  I've been told this area lies along the nerve that wraps around your back and goes to your groin.  When the left side of my waist aches it seems to be a pre-cursor to tingling where I get the worst lesion and the itching then starts.  It usually happens when I'm sick, run down or stressed.  Do you have anything like that?

      I cut out sugar at the beginning of this year with just the occasional relapse though I think I will get a diflucan prescription next doctor's visit as I often crash after eating.  I've also just started to cut down on gluten.  I don't really drink, but will miss real coffee so much if I have to go there.

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    • Morrell1951 »ChicaNZ

      The shingles connection is interesting, as shingles is a herpes virus. I haven't seen anything about LS researchers exploring a connection with that virus. They're looking at the virus that causes Lyme disease.

      I had a few headaches after quitting cooffee, first down from two cups to one, then none. It's easy now.

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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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    • hanny32508 »kina

      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.

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    • ChicaNZ »hanny32508

      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.

      _ 0 votes F Report Share < reply to ChicaNZ

    • ChicaNZ »hanny32508

      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.

      _ 0 votes F Report Share < reply to ChicaNZ

  • 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 ..

    _ 0 votes F Report Share < reply to Joodie

  • 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

    _ 0 votes F Report Share < reply to Suean

  • 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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