Awareness of Lichen Sclerosus

LyndyLou, do you have Coeliac Disease? Your post made me think of a family member who had severe B12 deficiency found to be caused by Coeliac Disease, and later she was diagnosed with LS. I’m wondering if there’s a connection between the two conditions.

I have it too. Use steroid cream daily to prevent flare ups as advised by consultant. I’ve found a peribottle great - marketed at new mothers but I use to wash vulva and washable sanitary pads to cut down on skin irritation. I have hydromol for washing and moisturising. My gp has a look twice a year to see if there are any suspicious changes.

I was diagnosed with LS about 10 years ago by my lovely lady doctor who recognised it straight away and I kept it at bay with steriod cream. However I haven't had a real flare up for some time, just mild itching now and again, and I have just realised that it has been much better since I was also diagnosed with Pernicious Anemia and have been having regular B12 injections. My dentist has also mentioned that my gum health is also much better since the B12 injections started. I also find I can now only wear cotton underwear, anything else will start the itching.

It's a relief to have stumbled on this 'old' thread and hope some GN'rs can enlighten me on this miserable condition. I'm trying to get an appointment with my GP to take another look at what he'd diagnosed as eczema a year or so ago, prescribing a mild steroid ointment, that doesn't seem to be working.

The unbearable itchy flare ups continue at night, now with worrying lumps added to the discomfort. Also for the last few years I've been having a patchy sore red blotchy inflammation on my hands, flaring up for no reason at night. My GP doesn't seem to know what it is.

This is very much an unknown and little spoken of condition. Only because of looking up vulva cancer (which I had a fear it could be) did I find some reassurance and words of wisdom from others here who suffer from this...'thing'!

I wonder how those GN's who were writing of it a couple of years ago are faring now?

Typo low-oxalate.

* Lady1* can you expand on your low -oxolate diet please?
What do you avoid?

I was diagnosed over 5 years ago. It is very mild as I keep it under control with topical steroid creams. Was advised to use once a week even when I don't have the itchiness but it tends to start a flare up if I use it too often. I also think the flare ups depend on what I eat. Apparently high-oxalate foods is thought to be a trigger so I am going to give this a go. The skin is always white, does that ever go away for anyone or is that there forever an does anyone have any other magic creams that work any better.

Not sure if this forum is still active. I just wanted to add that I have been following a low-oxalate diet for nearly two years. It's not easy. But I have not had to use the steroid cream since. I do occasionally get a flare-up when I cheat in the diet. I mean no chocolate was the hard part. And I had eaten a small handful of almonds with my coffee everyday for 20 years. That's the good part. I can still have coffee. Caution, some sources of low-oxylate are inaccurate.
This diet is common for people who get kidney stones.
Also, my accupuncturist suggested I stay away from bleached cotton pantiliners. So I only wear them when I leave the house. And I wear ones that don't have fibers up against my skin.

My teenage g/daughter has it, it took so many yrs for a doctor to confirm this is what it is, poor child has suffered and suffers so much with it, i hope and pray one day they will find a cure for it

I’ve had this for 20 years and at first I put it down to the menopause. Symptoms are either intense itching of the vulva or painful soreness. It doesn’t go away. Mine turned cancerous and was removed by surgery several times. It keeps coming back and has been the bane of my life. Do see a doctor as there are ointments for it and do check in a mirror for any changes,, such as thinning of the skin which has turned white. Not nice!

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)

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 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 !

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 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.

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

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

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

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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?

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 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 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 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.

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!