lichen sclerosis

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I think alot of people have an itch in the genital area and presume it is a sexual transmitted disease. I am over 60 and became aware of this itch which of course I itched which I now know makes it worse. I did go to the doctor and he suggested dryness due to age and end of menopause and suggested vaginal lubrications which helped but didn t totally stop itch. You do start to feel desperate. After about 6 mths my smear was due and the nurse suggested I had a white area in my genital area and suggested I get it checked at clinic. In desperation I went to a private gynaecologist who immediately suggested it looked like lichen sclerosis which I had never heard of. I then went armed with a letter from this private gynaecologist to my doctor who immediately arranged for me to see an NHS gynaecologist. He took biopsy which resulted in me being advised I had LS. I was given dermovate to use for four weeks morning and night and then hydrocortisone for six months once a day. After 3 months I have a second appt to check area. I think the main thing is you must not scratch the area and I found using this cream there was no need. But I do think GP s dont know much about this problem and a lot of women are suffering undiagnosed.

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  • Posted

    Pinkcat, thank you : I had much the same experience as you . I have been refereed to see Garny so just waiting . I have been going to GP for over 4 years with problem and been given pessaries for estrogen. I think this was a problem, but it masked the LS problem.

    At the moment I am just so scared that this is the end of a normal relation ship with my husband. I already feel old as just gone through menopause. I work in mental health and just don't know if I can cope with my job as getting dressed properly is so painful down below. ....not easy being a woman is it .

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  • Posted

    Hi Dianthus You do feel really uncomfortable with this problem. I could not sleep at night and,of course, you itch the area which makes it worse and red raw and you think is this to be the future, is this with me because of the menopause. I was at my wits end. After I was diagnosed and was given the cream immediately everything felt better and I did not have the itch and for the first time in ages I was able to sleep. Now I just use the cream and my life is normal. I was not in a sexual relationship at the time but if I was I don t think I would enjoy anyone touching in that area. Now I would be ok - just need to find a man now! Make sure you keep tabs on your gyni appointment because my referral from the doctor got lost in the mail and after a few weeks I rang to check how my appointment was coming along and they had not received the referral letter from my GP so I had to get my GP to send a second letter. At my three month follow up appointment the gyni was happy with the area and he said use cream for a further three months and then it is used maybe twice a week to keep area free from problem. LS is with us for life now and we just have to use the cream to control it. But I can assure you that once you start using the cream life quickly returns to normal.
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  • Posted

    HI Pinkcat. I'm glad the dermovate is being so successful for you. It helps me a lot too but I can hardly say life has returned to normal.

    It seems everyone with LS is different and has the disease to a lesser or greater degree, also may respond differently to medications, so you are lucky...well, nobody who has this affliction is lucky of course but you know what I mean.

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  • Posted

    I was diagnosed with Lichen Sclerosus 2 years ago and the dermovate cream immediately helped. I only use it now and again as soon as I feel any irritation, but I have had a rash for 4 weeks on my legs, arms, chest and back - the dr did not know what it was but prescribed hydrocortisone cream and anti histamines - this has not helped. I'm now wondering if I could have Lichen Planus - can anyone offer any help? Liz
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  • Posted

    Hi Liz. Very probable that it is lichen planus. I started off with LP in various parts of my body before getting lichen sclerosus.

    Legs, mouth and scalp and nails, then body, back, ankles wrists, behind elbows, as one site cleared another two started up. It took about 2 years to stop though I still have some slight vestiges of it. Dermovate dealt with the itchy part behind the elbows, I didn't treat my scalp and I just avoided tomatoes, citrus etc for my mouth. I had blistery things in a line on my back, little hard red pimply things on my body and ankles, and just one leg looked as if it had horrible ulcers but never hurt or itched at all. The above the elbows was classic text book lichen planus. Weird disease!

    Unlike LP, it does eventually stop, except if you have it vulvally it is hard to treat.

    So you may have both. What does your "maybe" lichen planus look like?

    Judy.

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  • Posted

    P.S. to Liz. Rarely you can get lichen sclerosus on the body too.
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  • Posted

    Hi Joodie, thanks for your reply - it's good to discuss this with people who have it instead of boring my family! The worst spots are red, hard bumps on the bottom of my leg, my chest and above my elbows - my back had been affected but seems to be clearing. On my arms, they are more like pin pricks after they have stopped itching. I started using my dermovate on them and it is helping a bit. I've been reading as much as I can find on it and have started to cut out tomatoes, chocolate, alcohol, yeast and citrus fruits. Last winter, I had itchy spots below my knees and at my ankles but never had to go to the dr about it and it went away fairly quickly, so I think I must be going to get it worse each year. Roll on the summer!
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  • Posted

    Hi pink cat,

    I am 70 and discovered that I have LS a couple of months ago. I was pretty devastated but have accepted the situation now. I have been told to use creams to stop dryness and am at present using emu oil, which I saw advertised on the internet. It is excellent as a moisturiser, but I am still looking around for other creams which I don't have to keep in the fridge! If you know of any, please tell me. Someone suggesed aloe vera but say it stings to start with, so I haven't started using that yet. It is bad enough having an itch in such an embarrassing place, but it is also painful. Quite a few women seem to keep LS under control, but for the moment it is raging! I like sweet things and apparently this just aggravates the situation.

    Well, I guess we have to keep cheerful! Good luck!

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  • Posted

    Hi Sorry to hear you ve joined the club. I feel I have just about come to terms with my situation. At first I was rather reluctant to use the creams on a regular basis and just hoped things would settle down but I realised this does not happen. I think the trick is to use the cream as soon as you feel an itch for a few days or until it goes. In my case, at present, this is usually about every two weeks. I use the creams that go in the fridge. If you are using a cream that does not stop the itch it is no good for this problem. I also wear cotton pants and when I get home or if I'm in all day go pants free. I also shower every day without soap in the genital area, just water, because urine in this situation is not good. Occsionally on a hot day I will use a dab of talc - non-perfumed talc. My doctor has told me to come in for a yearly check of the area. I have also cut down on cakes,buscuits, sweets and dairy. Hope this helps.
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  • Posted

    Hi Pinkcat, Happy New Year by the way!

    Just read your message about cutting down on cakes, biscuits, sweets and dairy and realise that I have been having all of these over Christmas and the LS is very bad at present. I love oranges but must face the fact that these do not help matters. Anything acid seems to make LS very painful, so I am going to have to be a lot more careful this year! Let us see if I can keep this particular resolution!

    I have been told to wear white underwear only as the dye of coloured pants is an irritant!

    Can't sleep and am writing this in the very early hours of the morning.....

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  • Posted

    Hi, new to this forum and glad I've found it. I had soreness and rawness and slight itching since May last year and went to the GP (3 different ones in a practice) and all said it was the menopause. It was very very dry and sex usually ended up in small papercuts which aggravated the situation. I searched and searched on the internet and then someone suggested LS. I researched LS and diagnosed myself and went back to the gp and told them what I thought. They prescribed Betnovate twice a day for two weeks, which did nothing. I researched some more and found that I should be using Dermovate. I went back to the gp yet again and got Dermovate. Since then I have seen the dermotologist at hospital after being referred and she gave me Epiderm ointment to wash with (after every wee). This keeps area moist and soft and helps stop any paper cuts. I use Ouvestin hormone cream twice a week (after having a Mureno coil fitted) this helps with lubrication etc and the coil helps protect my womb from cancer so they've told me. I have used the Dermovate twice a day for 8 weeks, and now have used it once a day for two weeks. After this I've been told to use it every other day for two weeks, then twice a week. I have a follow up appointment with the dermotology unit in 3 months time to keep an eye on me. So far, so good but like the rest of you I was petrified when I was first diagnosed and now life consists of washing loads with the Epiderm Ointment (which I admit is brilliant) and then the cream at night, and a mirror morning and night to make sure nothing is changing. More should be done to reassure women and I'm sure there are plenty of women out there who have been diagnosed wrongly, ie thrush, menopause etc. I'd never heard of this before I got it!
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  • Posted

    Also, forgot to say - I scared myself half to death looking at pictures on the internet .... my advice is DON'T ... these really are worse case scenarios!
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  • Posted

    Hi blue lady,

    Thank you for all the useful information and I am pleased that things are looking up for you. Sounds as if we got LS the same time last year! I was being treated for thrush for months and was getting quite desperate,

    But now I have a great dermatologist and at least I know what is wrong with me. LS front and back, which isn't too pleasant

    Washing constantly has been sorted, as I have installed a Japanese toilet, which includes a bidet! They are the most wonderful invention and have been a real boon to me!

    Sex is a big problem and I haven't found a solution yet to make things less painful, in spite of all the lubrication. LS really changes one's life in every way!

    Thanks again and keep well.

    Horses

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  • Posted

    Hi Horses

    I've been back to the GP today and he said to try Replens but I've researched all the reviews on the internet and mmmm not sure about it (have a look). I've got enough problems down there without adding to it. However, I've found another moisturiser, Hyalofemme which, from reading reviews doesn't seem to have the nasty-stuff.... you'll get my meaning when you review the product yourself. So, I've just phoned him and asked him to put me a tube of Hyalofemme up instead (by the way you can order this online or order from chemist...its not a prescription only cream). You use it every 3 days and the reviews seems pretty good ... so watch this space and I'll report back if it's made any difference to the dryness down there. I've used all the products on the shelf to help lube-up but it's still painful at times and to be honest I think some of them aggravate the situation as I'm always itchy afterwards, so I'm hoping this makes a bit of difference - any difference would be good! I'll keep you all posted.

    Blue

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  • Posted

    Hi Blue,

    Just been checking up on Replens and Hyolofemme. They both seem to need using only every three days, but if this works for you, please let me know and I shall try it. the specialists seem to think it is safe and effective. I come home tomorrow and will make an appointment with my dermatologist, who can advise me! I often suffer with allergies to skin products, so it is all a nightmare.

    I firmly believe what we eat affects LS and I am obviously doing something horribly wrong. so many foods are a no-no, it is hard to know which foods are in fact safe!

    Thank you so much for keeping in touch and giving me hope! Take care!

    Horses

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