Lichen Sclerosus

I have a large bottle of emu oil, which I find very soothing. I don't keep it in the fridge, because I cannot get it out of the bottle once it is solid, but it is a help. I am using betnovate at present, diagnosed by my dermatologist. I think I have had LS for at least a year, but the GP kept telling me I had thrush and, of course, the medication was not helping at all. Before I was put on betnovate, I used the emu oil which was great, but the itching is so bad I am using the steroid cream all the time. Once it calms down, if ever, I will go back to the emu oil, which I am now using on my arms, which are affected! I have moments of great sadness, although I am just 70 so have had a good innings! I wish I could have a good night's sleep; I am writing this in the middle of the night. Selfishly, it is so good to know there are other people out there with the same condition. Take care, all who read this!

Yea I understand what you are saying about a good nights sleep

Since I have had L S I feel so tired by mid day next day due to lack of sleep

In the daytime I use Vaseline or pure olive oil or baby Sudocream to keep me comfortable

And no underwear

I am aged 75

But I find GP,s lacking in care about the L S

Hi Janette,

Me too! LS seems to bother me far more at nighttime, so perhaps there is a connection! If I have a flare-up, it is almost certain that I will have a bad night's sleep. Someone suggested using the steroid cream (I use dermovate) mixed with emu oil and this does seem to help a lot. I travel around quite a bit though and emu oil gets very runny, if it is not kept in the fridge!

I am 71! I don't think it is so much a case of doctors not caring, I believe they do not know ENOUGH about this condition! I was fobbed off for ages, before I came to my senses and went to a dermatologist, who immediately recognised the symptoms.

Take care,

Horses xxx

hello i have just been told i have this LS at the moment i have just started treatment but so far its not working. i was told not to bath as this can dry you to much. help is needed

jean

Hi Jean. I'm 61. I've had LS my whole life, but just now have a diagnosis. I always thought it was thrush and psoriasis. I thought the atrophy was 'normal'. I find stress is the worst thing of all. I get shiatsu massage therapy to sort of balance my system. I realize some may think it's sort of New Agey, but take whatever care you can get to help you stay calm and centred.

Any of you using estrogen cream in addition to the steroid cream? I've been prescribed it because my ObGyn believes it may reverse the atrophy, but now I remember how depressed I became on birth control pills. The stress of this bad mood only makes the LS flare up, so I'm stopping it. I have a big jar of plantain ointment made by a friend. Very soothing.

Also, with the sleep issue – for a couple of years my inner thighs were itchy and red, burning. I couldn't go for long walks (or even short ones) because they'd rub raw. Since then even though they cleared up I've never stopped wearing a long nighgown or pajamas so my thighs can't touch and get hot and sticky in my sleep.

hi morrell I found i had to go for spiritual healing this is hands on healing to help with the stress this has been a great help i didnt have to tell the healer the problem. She told me what i had and there had been a lot of sadness in my life. she was right i am very private so i would have found it hard to explain to anyone. i am going to for now stop the treatment the hospital have given me and try to heal via pure products. i have done to much reading and all seems its the steroid cream makes maters worse if this thins the skin to much its not a good idea to use it. emolient soap free cleanser i found stops the tissues from drying out to much. And olive oil is what i am starting to use but its in the cream. at the moment all over my body as this itch you all talk about. the first part i found on my belly now i have gone brown hahahah thing is i have never sat in the sun.

morrell going for long walks helps me i live in the country side and clean air is the best thing for me i feel. i have just had my first grand child at 62 a little girl i am going to give up working to look after her. while mums goes to uni best tonic i feel this will be. gave up driving now i am stress free from motor ways. one happy bunny i live on my own so now no man to stress me out hey just girly night out fantastic.

Yeah, gentle washing and lots of oil are a big help. Stupid me, when I first noticed the atrophy twelve years ago I imagined I hadn't been scrubbing carefully enough – I thought that would have prevented what looked like my flesh sticking to itself. So then I proceeded to do the worst possible thing daily for over a decade!

I'm not ready to stop the clobetasol, since the flareup I was having this summer was unprecedented and the cream has really calmed it down now. I'm pretty scared of what would happen if I stopped. I'd never had what women here call 'toad skin' until this summer – itchy red bumpy labia majora. And a fine crack in the crease outlining my entire labia minora, as if they were planning to separate and depart. Then I had a huge boil erupt right where the clitoral hood had fused over the past decade or so. Not to mention the big chronic crack on my perineum, echoing the episiotomy I had with my first child.

I learned to distrust cortisone creams after thirty years of using them on large swaths of my body for psoriasis. I had some bad flareups after I went cold turkey – moon face and all. I recall dermatologists warning me not to use them on my genital area because they'd thin the skin. Well, forty or more years of untreated LS did just a fine job of that anyway. I'm using the clobetasol at this stage of my life because I've seen the images of old ladies' totally flat, closed vulva – some need surgery just to pee!

Yeast is often confused with LS, but there's plenty of yeast there, always has been, waiting under the surface for the slightest friction to disturb and stimulate it. The very next day after the one post-diagnosis time we had sex, it was Cottage Cheese City.

Anyway, Jean, I feel vindicated that you also go for non-traditional care and value a calm mind. Giving up your job will probably lower the stress in your life and your granddaughter will be a light in it, I imagine. I left my very stressful job when I was 53. Who knows what a mess I might be if I'd stayed in the city. Here I live in quiet woods among enlightened friends and with an affectionate and understanding man.

I do know what you mean by girly night out. I left a ten-year relationship in 2001 and was alone without even a date for seven years, very calm and contented. I loved sleeping naked without it 'meaning' anything. I even took a Buddhist vow of celibacy. But then I'd met a number of happier couples than I knew back in the city and started to hanker. Luckily after a few disasters I wound up with a good guy who's realistic about our aging bodies. He has his own pain and troubles, too.

hi morrell its keeps kicking me off, thank you for all the info your giving me, will try and write more to you when the network sorts its self out. i am happy you found a nice understanding man.

morrell is LS linked to any other skin problems do you know they said i have the simplex virus cant understand why i have no partner. they say it can lay undetected for many years. thats what a test revealed this week. was married 33 years before it all ended. in 2002.