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Lichen Sclerosus

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    New to LS - start here

    Below are various resources for Lichen Sclerosus from leaflets to useful web sites and recommended discussions. You may wish to reply to this discussion as a way of introducing yourself to other forum members and giving a brief history of your situation. There is a patient leaflet on LS here which also...

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    Lichen Sclerosus Survey Results

    These are the results from the Lichen Sclerosus survey. I am posting the raw data. If anyone wants to analyze the data they are welcome to do so. It might be good for a graduate degree. https://www.surveymonkey.net/results/SM-5BF8TW5D/

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  • I’ve made myself a nervous wreck!

    Hi, I started seeing a dermatologist who specializes in LS. I was originally on a medium potency steroid given to me by a different derm who made it seem like she knew a lot about LS but it turns out she didn’t. Anyways, my new derm gave me clob to use 1-2 times per week. As soon as I started using...

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  • Lichen Sclerosis

    I have been  diagnosed with LS , and at the moment having a really bad flare up , I'm using the Betnovate and E45 but the burning sensation is not getting any better, this is now the second week. As anyone any ideas for relief. This is a really depressing disease

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  • Just Diagnosed 🤦🏻‍♀️😥😥

    Although i am gwtting to grips with my treatment plan , i am so glad to have joined this group and see how you wonderful ladies are coping . Can i ask re urination I pass water frequently as i do have a healthy dietand drink a lot .But sadly this makes me sore 😬 Also I am afraid about the demise...

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  • Chlobetosol

    Thanks to others who mentioned using olive oil. My doctor prescribed Chlobetosol once a day for 4 days, but it actually seemed to irritate me more so I stopped using it. I've been using olive oil and while still sore, it's been a bit better. I see a gynecologist tomorrow.

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  • How often do people use Clob ointment?

    Hi i got diagnosed with LS about 7 years ago but didn't know much about LS until recently when i joined LS groups. Which scared the life out of me because I never really used the ointment that i was given i felt it irritated it more. So I went to my local doctor today and she said i have a small...

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  • LS

    I am absolutely pulling my hair out. This LS is doing me in. Seriously thinking about sleeping when I can during the day and living as best I can during the night's. I'm 61 and my life is ruined. Does anyone else cry all day.

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  • Borax or baking soda- coconut or castor oil

    Hi All, I'm a little overwelmed. What seems to work best soaking in borax, baking soda or both mixed and how much do I put in the tub of water? Or is it a simple as a mixed borax or baking soda mixed with a customer of water, put in a spray bottle and spritz after using the bathroom ? Ratio...

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  • Borax or baking soda- coconut or castor oil

    Hi All, I'm a little overwelmed. What seems to work best soaking in borax, baking soda or both mixed and how much do I put in the tub of water? Or is it a simple as a mixed borax or baking soda mixed with a customer of water, put in a spray bottle and spritz after using the bathroom ? Ratio...

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  • Lichen Sclerosus in Remission??

    Hello Ladies - First of all, I want to sincerely thank all 1528 of you in this group forum.  You have helped me tremendously with this horrible condition.  I read all the posts and gather little gems of knowledge from you all, from the questions and responses.  It’s so helpful.  I...

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  • New to the group

    Hey guys I'm a 34 year old guy who has been diagnosed with ls for just over a year now. I have to say that my dermovate treatment and various other wash's have managed to almost make my symptoms vanish. Anyways I'm here to support anyone who needs advice or help.

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  • LS and Uveitis

    Hello, New here. I have suffered with diagnosed LS for about 14 years and this past year or so seems to be spreading and harder to deal with. In the past 6 months I have also had two Uveitis (inflamation of the eye) flare ups for the first time. Uveitis seems to be a result of having an underlying...

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  • 57 African American Female who made have lichen sclerosis.

    I replied to a post that was 3 years old. I have an appointment with a gynecologist, next week. Been celibate for almost 4 years and have been dealing with uncontrolled high blood pressure, congestive heart failure and severe sleep apnea. I have worked so heart to get these conditions at a manageable...

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  • LS & Vitiligo

    Hi Ladies, strange question for you all ok...! Do any of you suffer symptoms of Vitiligo apparently there are close links between the two, Both need steroid ointment, injections etc to be treated.  Both Auto Immune problems, just wondered if anyone else had read things between about the similarities in...

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  • How to apply clob?

    I watched the Dr. Goldstein video so I now know to soak for 20 mins and then apply the clob and rub it in for 90 seconds. Do you just use your fingers? Will the clob thin the skin on the fingers? Do you wear gloves? I'm sorry if these are dumb questions, but my doctor just told me to apply a...

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  • Stem cell treatment

    Hi Everyone, Hope you're all coping with your symptoms and not suffering too much. I haven't posted on here for a long while but felt someone may be able to help.  I was diagnosed with LS about 4 years  ago (think I've had it mildly for longer than 4 years).  I currently use...

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  • I'm new to this situation

    Hi , I'm new to this situation but I've been reaserching about general health for almost 5 years , LS in a new symptom for me , I've not been to the doctor and I don't go very often to one , I don't take any prescribed or chemical pills I eat organic and I just read a lot , I first...

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  • skin tears

    Does anyone know if getting "paper cuts" not only in vaginal area, but on your hands, toes and inside ones mouth are ALL part the LS?

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  • Any link to sunburn

    hi all! May sound a bit of a weird leap but I’m on holiday at the moment in Thailand but suffering the worst sunburn I’ve ever had! I can only think the LS is the difference in my lifestyle...... I use factor 50 and I still burn.....just a thought.....

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  • Tiny black dots.....??

    I have noticed that 2 tiny black mole like dots have appeared. One of them I've had for a while and I just thought it was a mole but now another has arrived. Their not raised or anything and don't itch but I wondered if anyone else sees these mysterious dots happening to them. About the size...

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  • LS itchy relief

    Evening everyone 😃 I was diagnosed with LS about 10 weeks ago by a doctor and it was confirmed by a specialist 2 weeks ago, who gave me all my prescription creams, gel and wash lotion. My itching has finally stopped but not the soreness. I have totally cut out all yeast and yes it’s been a bit...

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  • Lichen sclerosus Clitoris disappearing

    Hi, have been diagnosed with lichen sclerosus for a few years. The mad itching has stopped and I though it all better but to my horror, my labia minora and clitoris have practically disappeared. i know some folk have said the parts have fused rather than shrunk. Is this true even of the clitoris? I can't...

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  • Lichen Sclerosus Treatment in Essex UK

    Hi  I was diagnosed with LS at 37yrs and had been treated for thrush for about 8 years previously. Lots of discomfort and fobbed off by doctors. However I now see a really nice consultant gynaecologist in Colchester General Hospital who is very helpful there is also a vulva nurse who specialises...

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  • Newly diagnosed and curious about the progression of LS

    I am a 49yo female recently dx with LS, I have also had Breast Cancer and they put me on meds to stop the estrogen production so the side effects mimic menopause. How fast does LS progress and does Clob just keep the itching and pain to a minimum or does it slow down the progression? It also seems there...

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  • Lichen Sclerosus on body

    Hi, i was diagnosed with LS about 2 years ago when i was 18. I have it all over my body, it started on my chest, and now its on my back, legs, arms and stomach. I didn’t have any in my vaginal area until a few days ago. Its a rare disease already but having on your body it pretty rare, I haven’t really...

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  • biopsy question

    how progressed does this disease have to be to be diagnosed by biopsy? If it isn't bad enough are there enough skin changes to know that it's LS vs. things that may look similar?

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  • I needs some helpful information

    Hello, ladies I'm looking for some help I was diagnosed with LS about five years ago and I can not find any relief from the itching and burning. My doctor gave me all kinds of home remedies to use I'm not able to afford the steroids cremes. And is shrinking normal with LS I'm so embarrassed...

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  • LS back after years of remission

    Hi Ladies For some unknown reason my LS has returned. Haven't got any fusing or whiteness just itchiness, have tried borox in a bath but isn't working for me. I ordered in the UK and it was Borax Decahydrate Technical Granular - is this the right stuff?? TIA X

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  • Possible GHSV-1 (high IgG positive) and pending biopsy for LS

    Hi there, wonderful amazing people, So this has been the year of health issues for me (‘30s mom of 2). Five root canals, bleeding disorder from long-term ibuprofen use for injury-induced arthritis, increasingly painful sex to the point it’s not been an option for several months now (luckily I have a...

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  • Lichen Sclerosus nearly cured

    I had a biopsy and it was confirmed I had LS.  I was put on steroid cream and told I would have to be on it for the rest of my life as there was no cure.  Well I knew that wasn't going to be my way of dealing with it. I did try the cream and it instantly irritated my skin and it went bright...

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  • Help

    So 3 days ago I was washing up and I felt pain on my clit a weird feeling so now it looks swollen but I have white on it and its only the left size that hurts I can barely walk I have token many pictures only thing I notice weird was the white and the swelling I can't see if I cut it or not

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  • Feels like my entire vulva is disappearing; advice? Help?

    Hello! First time poster, but I've been browsing on here since my diagnosis a few months ago. For years I was having constant vulvar pain, and attributing it to UTIs. Finally went in to see a gynaecologist, after my mother developed vulvar cancer. Gyno diagnosed me with LS and gave me clobetasol...

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