Awareness of Lichen Sclerosus

I was diagnosed with lichen sclerosis 2years ago. I had suffered acute itching and soreness and uncomfortable sex but just attributed it to being post menopausal. When I had a smear test my gp was not happy with skin in this area and referred me to a dermatologist. I was diagnosed with LS and prescribed a low dose steroid cream to be used initially for two weeks and then to use when I had a flare up. I don't get flare ups that often, but it's important to use the cream as soon as you do feel something is starting. It's important not to use the cream too often as it can make the skin thin.
It's been a great relief to get this under control. Thank goodness for that smear test!! ?

How do you tell the difference between this condition and Vaginal Atrophy?

Lichen sclerosis is a skin condition ie more on the outside and vaginal atrophy is more inside. Vaginal atrophy responds well to local oestrogen cream and as has been said already LS needs a potent steroid cream.

I was diagnosed around 5 years ago. My GP prescribed a steroid cream which I use once or twice a week. Luckily I rarely get flare ups as then I'm in a lot of pain. Reading up on this condition I realise I have only had mild symptoms.fingers crossed I can keep it this way.

Another one here. The steroid cream seems to keep it under control.

I have lichen planus. I’m not sure what the difference as the symptoms and treatment sound similar. It was originally diagnosed by my dentist as you get a grey substance in your mouth (where he was looking) and in your vagina as well as soreness. I also get red, itchy outbreaks on my skin. I seem to be more prone to these when I am under stress (which is most of the time these days).

Hi, I have LS since last year. Using high potent steroid oniment and emulsifier to moisturise skin. I agree that this condition is misunderstood and often misdiagnosed. In my experience it also carries a stigma. I have felt judged by one health professional. It has, thankfully responded well to treatment. I have been told it will remain for life and to expect flare ups. I apply the steroid even though I have no symptoms twice weekly to reduce my risk of flare ups an lower my cancer risk. The cause is not really understood as far as I can tell, although I was cycling a lot before the initial flare-up.

Another one here and a poster on the earlier thread.
The steroid cream is very good. I seem to have more itching when I over indulge in sweet foods like chocolate and ice cream, I don't know why that is.
Yes it is for life I'm afraid there doesn't seem to be much research into this.

Someone I know suffered with this for a long time before getting help. She has now got a diagnosis and finds the cream a great help.

What I fear most of all about having this is when I get really old and perhaps go into a care home, staff don't know I've got it and I sit there constantly scratching my Jack and Danny.
Ooo dear!

I was so scared 10+ years ago when I noticed changes in both skin colour and shape of my labia. I saw a gynaecology consultant privately who was very reassuring.
Like Sunlover I am fortunate to have a mild version. At the time there seemed very little awareness of the condition.

I had never heard of it and haven't heard of anyone I know with this condition. Unless like me they haven't told anyone.

I was aware of it, but to be honest because things like this and vaginal atrophy are not talked about , it would be difficult to guage how many people are actually affected by it. I did not know men get it and did not realise your dentist could diagnose it. That is useful to know.

I was diagnosed 5/6 years ago. Lately I’ve been a bit lazy ( been symptom free)and haven’t been applying my steroid ointment in a twice weekly routine. Then a horrid flare up. So sore. Agony to pass urine. Back to applying twice a day for a week and now symptom free again. Must stick with maintenance routine!!

I have been seeing my gp for around six months and she didn’t have a clue what it was. She now thinks it’s Lichen Sclerosis and has referred my gynaecologist. However she told me to stop using the steroid in the mean time which caused it to flare up! Not sure how long I’ll wait for an appointment. What treatment do others do?

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chickkygran

I was diagnosed with Lichen Sclerosus earlier this year. It’s a chronic skin condition which generally affects the genital areas. There has been another thread about this earlier this year, but I felt I wanted to highlight it again as it’s often misdiagnosed and women are treated for thrush. It can affect children, men and some people have it their entire life. It is commonly found in postmenopausal women. Medical professionals aren’t sure what causes it - possibly autoimmune, genetic, hormonal. It’s important for the condition to be treated, generally with a potent steroid, as it can lead to vulval cancer.

My reason for starting this thread to find out how many of our gransnetters are aware of this condition. I’ve spoken to 8 of my friends and none of they have heard of it. Also, if many of us are suffering it (I respect if you prefer not to discuss your health) . I know there are several women on the site who are suffering and I found a very useful FB support group through the previous thread.

Dear all, this is the first time that I write in a forum, so I apologize in advance if I don't manage too well First of all, I really hope that you are finding comfort with this sickness. I was misdiagnosed with it and just today I knew that it is finally not LS (they don't know what it is yet, though), but the thing is that I read very much about this during the last weeks and I decided to write my next book based on the experience of different women. My name is Marina Perezagua, I am a writer from Spain/France but currently I am living in New York. I have published five books and I have been translated into eleven languages. I think that this topic does not have the necessary attention and I would like to work on it with your help. I could give you my email address and you could tell me your personal experiences there. I am really serious with my job and I can tell you that it would be a good book not only from a literally point of view but also as a way to rise consciousness. What do you think? Thank you very much in advance, I am really looking forward to hear from you. Best. Marina

Yes my sister has it. I knew about though as I used to type letters in the Gynae department of the local hospital!

chikkygran I’ve never heard of it, thank you and subsequent others for the insights.

I was diagnosed when a nurse noticed the white patches on my vulva when I was being investigated for bladder leakage. I had no symptoms at the time but had been to the GP when I had severe pain and itching a couple of years previously. I was treated for thrush but it was no better. I went back and the doctor was puzzled but couldn’t think what else it could be. It cleared up on its own. I eventually had a biopsy to confirm the nurse’s diagnosis.

I’ve had no flare up for years so I’m very lucky. I think the cancer risk is very low but obviously can’t be ruled out. One doctor I saw after diagnosis said he could just remember it being mentioned during his training but he had to look it up in a textbook for more information - I am sure the original GP would have referred me if my symptoms had continued.

After some years of vulval itching and soreness and trips to my gp who thought it was excema I was finally referred to dermatologist and diagnosed with lichen sclerosus. Currently it has spread a bit despite starting with strong steroid ointment and feeling very sore and inflamed. I’m a 71 year old woman and had never heard of this. If I had known I might have got an earlier diagnosis and therefore suffered less damage. Feel strongly that women need to be made aware.

I was diognosed with LS four years ago . Like others I have used the prescription cream when I have a flare up. It is a distressing condition. One thing that has helped me is to wash my underwear - knickers and bras on their own and without washing powder. It does take a few washes to remove soap residue! Or you could throw your underwear away and buy new . May not work for others but I am much better , LS is still there but is greatly improved. Worth a try !

I have had LS for 20 years, and I do agree with one post it said it is sort that it is caused by an immune reaction in your body,I also have mild asthma and underactive thyroid which are all immune conditions
My treatment has been the same as most other posters steroid creams to use as and when,I find it flares up most in summer when I’m in bed because I’m hot,I also use a plane acquiesce cream which moisturises the area and that helps a lot

I’ve never heard of it so thank you for the information. We don’t talk enough about the health and comfort of post menopausal women (or older men for that matter)