nightmare

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i had a name put on to this condition one week ago and i am devastated. i thought with treatment it would disappear just as quickly as it started, which was about 8 months ago. i have experienced the horrendous itch, and the cracked anus, which yes makes me weep. I am wondering, will it move to my vulva or will it be contained to my anus. can i spread it myself? I cannot believe i have something that will never go away, and i have only realised this by reading all the posts on this site.

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9 Replies

  • Posted

    Hi there Amac

    I'm so sorry you are suffering so much - we are all in the same boat of pain so please please don't feel alone. I have only just joined the postings (under Papillon) and am as 'green' as lots of others about LS. My entire vulval area is affected, including the anus, and I wish I knew enough to help answer your question but sadly I don't. Do you see a Gynae at all? I have trawled the internet & there are a few sites with info on, but much of it is from the medical fraternity papers with terms I can't decipher. If you need to 'chat' here I am, there are lots of people like us & maybe if we all support one another we can ease the worries a little. don't despair. Jan x(Papillon)

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  • Posted

    hi Jan

    thanks for response. local sexual health clinic runs LS clinic every 6 months, which I will go to. It is run by consultant gynaecologist with special interest in LS i would like to figure out how it flares up after a week of no itch. i scratch myself until i bleed, and why in bed is it 100 times worse. So many questions, and hard to find answers. have tried internet but nothing

    i will continue to use Dermavate as necessary which does help. also not using products has helped also. but the itch continues

    AmacD

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  • Posted

    Hi Amac and Papillon, I'm sorry Amac, it's horrible to realise you have something that won't necessarily just clear up as you'd expect. Tho my gynae said it can just clear up of it's own accord. Otherwise you just need to keep it lubricated and use steroid when it flares up.

    Both areas are affected with me and i don't know how easily / likely it is to spread. I've had LS for about a year but feel grateful that compared to others my symptoms are manageable and not so debilitating, however they are consistent and i get regular flare up's which would leave me in agony were it not for the steroid.

    I'm on a constant learning curve with this so this site is great for linking up with others, treatments and experiences shared. Also as there is so little known about it; seeing what the common threads are re triggers in flare up's and in the origins of it which is especially of interest to me. Why won't some budding medical researcher do some studies on this??? (sigh) Keep posting and take care x

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  • Posted

    hi scuba, gynaecologist has told me that it will not go away, so it seems that the professional does not even know, when we have been told different outcomes. I think that is why i am so upset, there are lots of questions still to be asked.

    i am thinking of keeping a diary to see when it is at its worse.

    i am worried that although my condition does not seem as horrendous as some other people, my concern will be is it progressive given a period of time.

    amac

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  • Posted

    right, admittedly my gynae was vague and just said it sometimes DOES clear up of it's own accord but equally could (and obviously does) go on for years. Like you, I fear now i have this that it could worsen, the severity of some symptoms on here is frightening which is why i keep telling myself it's not so bad. but i've also been hanging onto hope that it WILL clear...

    do you know what may have triggered yours?

    I'm 38 and developed this a few months after several op's after i tore badly giving birth. There is some evidence which i came across online linking it to previous scar tissue.

    My gynae said it was unusual in someone of my age (linking it in most cases to hormonal triggers in the menopause) but i don't think it necessarily is, but i'd be interested to know.

    i agree, it's a massive unknown and the fact we have been given different info by the medical professionals pretty much sums up that they don't know much about it.

    i think a diary is an excellent idea and i think i will do the same. i have noticed it seems worse around my period and i am currently treating myself for thrush right now as well which another poster on here said frequently goes hand in hand with LS...

    I'm very interested to hear there is an LS support group and would be interested to hear more of the Consultant Gynaecologist who is taking a special interest in this (about time someone did). I notice you're in Glasgow, I'm in Aberdeen and will make enquiries to see if there is something similar here.

    take care

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  • Posted

    Hi,

    I used Protopic for several mnonths and combined it with a mixture of

    Almond oil (100 m) + tea trea oil (15 drops), lavender (20 drops), sandel (20 drops). I applied th oil mixture in the evenning.

    Thereafter I stopped using Protopic and use the the oil several times a day.

    I honestly can say, all is fine, the skin is perfect, no itching etc.

    Please try it, a natural and veryx promissing way.

    Regards

    Cora

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  • Posted

    Thankyou Cora for taking the time to share that, I will make a note of it and give it a go. I would much rather avoid longterm use of steroids so I'm willing to try anything. The only oil I am unfamiliar with is sandel, is this sandalwood??... I'm curious to know where you got the details of this treatment from?

    Thanks so much

    I've just discovered (thanks to another user on here) ls-bxo.org, Lichen Sclerosis support group, very helpful and reassuring to find more on this.

    x

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  • Posted

    hi scuba

    i am 61 and have no idea what started it off. had a bit of trauma with daughter and felt quite stressed for a while. perhaps that.

    went to gp who gave me betnovate, but it was only few weeks ago when i was having a procedure carried out that the consultant said i had LS and was shocked. She told me then that it would not go away and I said F*** knowing how much discomfort i had been in for the last few months especially in my bed. i thught i could not use dermavate long term but she said to use it in decreasing amounts anything up to three months.

    I will try the oils that Cobra has mentioned, i am sorry that you have it and only being 38.

    i will also see if i can find any leaflets on it from the clinic i was at.

    Ann

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  • Posted

    Hi Ann

    Yes I have heard that stress can be a trigger in flare up's, who knows, maybe that can be enough to start it. As i said previously, scar tissue (and i assume general repeated trauma to the area - 3 operations to stitch me as the wound kept breaking down) was what has started it with me. This is bad at any age, there is always someone worse off, i was shocked to discover children and teenagers have this. I thank my lucky stars it's manageable. Do you find that dermovate \"repairs\" you (short term anyway) and eases the pain? I'm quite happy to stick with Trimovate, they both have the same amount of steroid in which is apparently low dose though i would still rather not use it at all. I find that keeping the area lubricated with Dermol once or twice a day helps reduce the need for steroid. I remain optomistic that there is a long term, natural solution, i'll try Cora's. If you haven't already, check out ls-bxo.org, Lichen Sclerosis support group, lots more info and an active forum. Keep posting Ann and take care.

    Lindsay (scuba)

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