Lichen sclerosis

I’ve suffered for 10 years from something that was diagnosed as LS (not offered a biopsy by dermatologist). It was a nightmare and support and interest from the medical profession was as described by posters further up the thread. During COVID I was referred back to the GP as the problem is not a priority. I’m interested to see someone mentioning Gladskin. Life has been bearable again by using their eczema gel twice a day and the only time I’ve troubled a (very disinterested) GP was when I was using a tube of gel that was close to the use by date. Cracked open a new tube and all was ok again. It’s not cheap but as your life is very curtailed when you are suffering anyway, I’d rather live simply than with constant soreness.

BlueBelle I hope the cancer caused by the LS stays well away from you.

I suffered many years with this little known condition and finally saw a GP 4 years ago, who diagnosed eczema, since then had another diagnosis as suspected LS, leading to a hospital appointment 3 weeks ago leaving me with a prescription of creams and potions to use in defence - Dermovate, Dactacort and Epimax.

Like Bluebell, I'm spreading the word about this little known, potentially dangerous condition and have asked my three girls that if they ever get an itch in the vulva area that doesn't resolve quickly, then go to your doctor.

I had cancer from LS this year I have had two ops it was stage 1 and now declared fit and well (so far) will be tested every 4 months for next 5 years
I had never heard of it before
My doctor was unsure what I had as it wasn’t showing as expected but bless her she was big enough to say she wasn’t sure and sent me on a two week biopsy journey

I have been very open with friends and now have two of them under their gps for it

I had this itching/burning condition for such a long time and the first health nurse I saw was useless and gave me Canestan, no use at all.
After that I saw a GP who prescribed Elocon Mometasone furoate and that has been like a miracle cure. I couldn’t believe how quickly it worked and wished I had seen a good GP earlier as I had itching to a frenzy driving me mad.

Forgot to ask…..does anyone use coconut oil on LS area? And is it helpful?

Hadn’t looked at this thread for a long time and realize it hasn’t been active. Just wondering how everyone’s getting on? I’m having an LS flare up at the moment. I’m prescribed Vagefem for itching and burning, but find the leaking of it from my vagina irritates the LS patch. Can’t win!

Not my ! Sorry.

I have had LS for a number of years , it is managed by Demovate during a distressing flare up. I have also had digestive issues (unconnected of course to my LS) Have had colonoscopies - all clear thank goodness. I decided to stop using dairy milk and switch to non dairy 'milk' in an attempt to help my tummy problem. Since this milk change my LS is at an all time low. I am not sure if dropping dairy milk is responsible for the vast improvement of my LS or if has just settled down for a while- it may well rear its ugly head again! which will result in a visit to my GP. I would be interested to know if anyone tries the non dairy milk and notices improvement in their LS. I have also taken the advise from someone on GN who suggested using Aveeno cream ' down there' this has also helped so thankyou for that !
Next time I need to visit my GP I will ask her opinion regarding switching to non dairy milk. I send everyone who has to live with LS good wishes and good management of my this horrible condition .

Hi there. I have just discovered this forum & thread about LS which I have suffered from for about 8 years and get very frustrated that there appears to have been little research done into it, I suppose because it’s not common enough to make it worthwhile to the pharmaceutical industry. The vulval tissue has become so scarred and fragile that I have pain most days and penetrative sex is now too painful even to consider. I sympathise with woman who have had to have mastectomies and breast surgery and their feelings of “lost feminity”but LS has had the same effect on me, yet none of us feel ready to talk about it in public. Does anyone else feel the same?

How often should I get it checked?
I was diagnosed 12 months ago with LS. The gynaecologist made me feel it was my fault, and after 6 months, discharged me back to GP. I won't go to the GP for checks because I don't believe they really know what they are looking for. I apply demovate twice weekly and self check, although the itching is often relentless and I feel completely unsupported. I also cycle which I'm told is not helping. I've also learnt to be careful which health professionals I mention it to, as in my experience, lack of knowledge can results in negative assumptions, followed by humilation and embarrassment for me. Its just easier to put up with the symptoms but really, I need to get this checked again. Does any one else feel this way and have problems trusting health professionals to correctly identify changes?

I have had lichen sclorosus for 2yeats confirmed after 1 year just told to go away and use the steroid. Does it work as I have found lots of food eg.beetrot that starts it if again. So should I use the steroid but how do you know where to put as u can't see inside. P!ease help the doctor's don't.

Ocean le bou

Thankyu fr your replies guys; yes it seems after all trial and error the Dermovate steroid cream is the most effective - I’ve been using it fr about 8 years now and finding I’m getting side effects on my face - always had nice clear skin now it’s constantly covered in red sore lumps and bumps - I will have to do more research on the matter. Many thanks for taking the trouble to reply xx

I too suffer with this. Was diagnosed about 6 years ago. Most of the time I’m fine and just apply my ointment twice a week. When I have a flare up I’m in agony for a few days until it calms down. I find that if I get constipated and struggle to have a bowel movement it sets off a flare.

I was diagnosed with LS about 2 years ago after months of self treating what I thought was thrush. It is an autoimmune condition - where the body's immune function is in overdrive. I had to see a consultant gynaecologist and he prescribed a strong steroid cream (Dermovate) which brought immediate blessed relief. I used it exactly as described: twice daily for 2 weeks, once daily for two weeks, twice weekly for two weeks. It worked brilliantly. I keep a tube of the cream and when I get a flare up (never ignore it) I return to twice daily for a week and that knocks it on the head for months. It is important to only use really tiny amounts of the cream. Never use soap to wash this area. I need a quick check up once a year by the GP to make sure all is well. I hope you are able to get the help you need.

I was very interested to hear that side effects have been experienced using Dermovate long-term, as I’ve been experiencing red swelling around my nose which spreads to my top lip and forehead with small pin size red spots - the end of my nose gets quite sore. So I am wondering if this is a known medical condition ? Have been trying hard not to use Dermovate gel at all and experimenting with various natural products but I always have to eventually go back to using the Dermovate to help when big flare ups occur and the itching becomes unbearable. I suffer a lot with cystitus as well and wondering because of the atrophy caused by the disease is causing bacteria to enter the vagina and do cause the cystitus? It’s all very Much on-going and Using antibiotics Quite a lot. Anybody else aware of Dermovate side effects - and what to do?

@Tea3 can you tell me please what emu oil is? My go thinks have LS but not had my hospital appointment yet. Many thanks

Some years ago I was alarmed when I realised my labia had shrunk. A mirror showed me a white patch about 3” x 2”. I was scared and paid to see a consultant privately as soon as possible. He was lovely, thorough, and reassuring. I use dermovate twice a week and E45 cream the rest of the time.
I am fortunate not to experience itching now.
I agree with previous posters that this is a little known or discussed condition. Thank you, posters who have said where more information can be found.

After six months my doctor googled my symptoms and said she thinks I have Lichen Sclerosis. She told me not to use any creams until my hospital appointment which could be ages away. I have many steroids in the house what have others used and how often? Does this ever go away or die down?

Just saying hello and hoping everyone is having a comfortable day.

Thank you for all your candidness as this is not really a subject you can bring up easily! None of my family know I suffer from this horrible thing apart from my OH but he doesnt seem to understand how awful it is and how very uncomfortable it can make you feel.

Hi Tea3, thank you for your reply.
The worst thing about this condition is that it seems to carry a stigma which doesn't encourage disclosure.
Thanks Squiffy for the suggestion about the olive oil. I've heard that emu oil is good too. Just not ready to put anything other that emollient on at present as the product prescribed is so soothing. If suggested products avoids the use of very potent steroid oniment then thats my next route to take. Many thanks both.

Olive oil is reputed to be soothing and protective. It helps to prevent the area of skin from drying out and keeps it soft, so less likely to crack and allow infection in.

Skier I am very familiar with that lonely dark place. I'm also very familiar with negative experiences involving the medical profession. I can't talk about this with anyone I know, it's not quite like having a moan about your tennis elbow or dodgy knee!

Hi, just joined. Ive recently been told I have LS with erosive lichen planus. It burns and itches mainly at night. I've used dermovate for almost 3 months now prescribed by gynae consultant which has helped, plus the emollient applied very regularly often after putting it in the fridge! A tip I read somewhere. I'm so relieved and grateful to find this forum. I have been feeling quite alone with this. My GP wasn't very reassuring and made me feel very uncomfortable, although I realise now that she did not know what was wrong so presumed the worst.
Its a horrible condition which seems to be misdiagnosed and misunderstood. It has affected my mental health and things have been very intense over the last months. I'm in my 60s and I like to think I can deal with most things that life throws at me, but this has been a curved ball. I haven't felt comfortable returning to my GP, but will see the specialist soon and hopefully return there for checks if alls well.
I'm gradually learning to self manage whilst learning what's best for me. I wish you all the very best and thank you for sharing your story's, it's inspiring and provides me with a helpful glimmer of light to follow when I'm in a dark place. God bless.

That is awful Absthame. The medical profession doesn't seem to have any idea how to deal with this condition.