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Lichen Sclerosus

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  • Emis Moderator M
    Pinned

    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 guide to using the forums here: http://patient.uservoice.com/knowledgebase/topics/59133-discussion-forums...

    217 replies 23 votes Last reply
  • paula92906 2
    Pinned

    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/

    17 replies 12 votes Last reply
  • Nelsmydog 3

    Men with LS

    I saw my brother recently, he has been grumpy and short tempered for years.   I know he had an opeartion about 10 years ago because he couldn't poo properly,( he's known as a tight arse!  Lol.) he was saying he was really uncomfortably and itchy and thought he might need another op......     I suggested...

    3 replies 1 vote Last reply
  • alistar 3

    An Experiment with Borax

    So, I've been in Vietnam now for just over a month. Haven't had any itching, but the white plaque has expanded and looked like a bit more fusing had occured. Panic set in and of course I was trying not to. However, now that we're here, my husband has been able to start doing more research to help me....

    545 replies 9 votes Last reply
  • lane22589 2

    does this look normal?please help :(

    I been having itching and a thick mucus discharge with blood. I went to a gyn and she prescribed  me some pills telling me it was vulvitis. After 5 days of treatment ( i will be done tomorrow), the itching is not bad, but its there. I want to know your opinions because I cant trust what she told me....

    2 replies 0 votes Last reply
  • dee3296 2

    Someone has helped me tremendously!

    I want to thank the person who recommended the use of Emu Oil.  I am 72 and was FINALLY diagnosed with LS 9 years ago.  I was given Clobetasol to use but no other information or instructions.  Thankfully, that worked until I was taken off my estrogen patches due to a family history of strokes.  As time...

    3 replies 3 votes Last reply
  • K.G 2

    Redness from clob?

    I have been using the clob ontiment 2 times a day for a week. I have been putting a very thin layer on the white spots on my labia majora after soaking for 20 minutes. I noticed that my labia minora is very red. Is this side effect? Could the clob be burning my skin?

    2 replies 0 votes Last reply
  • amyroffles 2
  • grace711 2

    Daughter with LS

    Hi, Just found this forum and I'm sure if I looked through all 47 pages I could find some info on daughters but I am a busy mom! My 10 year old daugther was diagnosed with LS 1.5 years ago. She does not have any symptoms other than whitening of the skin, and upon diagnoses had one "blood blister" looking...

    10 replies 0 votes Last reply
  • D0728 1

    Newly diagnosed

    I'm so depressed about this new diagnosis. I had no idea what it was that was wrong with me. I was embarrassed and afraid to tell anyone. Went to the doctors and got a really nice obgyn and she took the time to explain what was going on. Although I'm glad to have an answer I feel like my life is ruined....

    2 replies 0 votes Last reply
  • DaisyMayyy 1

    LS has ruined my sex drive

    Hello. I have been recently diagnosed with lichen sclerosus. I am 26 years old. My husband and I have been together for 6 years. I have always noticed the crack at the top of my vulva since I was young (around 10-12) I always related them to yeast infections. Only recently (the past 6 months) its...

    10 replies 0 votes Last reply
  • Jeanie44 2

    Possible misdiagnosis?

    I thought I'd share my experiences with LS really to find out if this might help or ring bells for anyone else using this forum. I started experiencing terrible itching - initially mostly in the genital area but then it spread all over my body. I saw a skin specialist and was tested for alergies and...

    2 replies 0 votes Last reply
  • Wlparadise 1

    Protopic for Lichen Sclerosis

    Steroids, clobetasol, estrace and testosterone all burn my skin and made my LS symptoms worse. Nystatin triamcinolone Acetonide cream and Nystop powder have made it better. But I still have a few plaques. I have been reading about Protopic. I have long thought that psoriasis medications may be a cross...

    1 reply 0 votes Last reply
  • roseluv 2

    If clobetasol isn't working for you..

    Hi Ladies, I just wanted to pass on some information that helped me and hopefully can help someone else. I was diangosed with LS via biospy about this time last year. At first, my dermatologist prescribe me clobetasol (yes, dermatologist. I went to my OBGYN FIVE times!!! all misdianogsed, I was finally...

    9 replies 0 votes Last reply
  • K.G 2

    Feeling of fullness/heaviness??

    Hello! After 8 years of remission, I'm in the midst of a flare. I've been back on clob ontiment twice a day. I don't have any itching or burning. But, I'm having a feeling of fullness or heaviness in my vulva. Also like I have a super light weight pulling on it. Anyone else feel this way? Is this...

    2 replies 0 votes Last reply
  • ChrissyC 3

    Symptomless LS but loss of parts

    Is there ANY one else out there who has LS in the way that I do? I've taken part on several threads but have really ended up feeling more alone than ever. I have NO symptoms and I do know how lucky I am not to suffer the way most people do. My inner lips just turned white and despite diagnosis and being...

    148 replies 3 votes Last reply
  • w97202 2

    Healing time after biopsy

    Hello everyone- I am new here and am looking for some help. I had a vulvar biopsy 6 1/2 weeks ago and I am still beyond sore. I had 2 punch biopsies with stitches on labia minora and 2 on majora. I came back negative for LS, but I have had such a bad time with the healing. My dr. Said I could have sex...

    32 replies 0 votes Last reply
  • lorraine72329 3

    Why does the clitorus turn white

    Hi,this has happened to me, Just wondering why the clitorus turns white Mines got no colour at all, it looks awful, Is this normal with lichen's sclerosis? Kindest regards​xx

    3 replies 0 votes Last reply
  • Eb24hu63 2

    Does this look like lichen sclerosus? Pictures

    I posted in another forum and someone suggested I ask here. I've been feeling uncomfortable and when I looked, I noticed these white bumps in different parts of my vulva. I've noticed some before but they seem to be more pronounced and in more places. I also seem to be much dryer than usual. Does this...

    10 replies 2 votes Last reply
  • K.G 2

    In need of reassurance

    First, this forum has helped me so much. I am 29 years old and live in Washington DC. Eight years ago I was diagnosed with LS after a biopsy I had to push for. I did the standard 3 month treatment with clob and my symptoms disappeared. I was completely symptom free for eight years and was checked annually...

    7 replies 0 votes Last reply
  • Wero 3

    Diet and LS/LP

    I have both LS and LP and have gained so much support and advise from this forum. Since being diagnosed a couple of years ago and receiving treatment, I have reasonable control and am doing well. However, like many of us I have identified certain things that cause the condition to flare. I have been...

    15 replies 0 votes Last reply
  • jon15536 1

    New diagnosis

    After months of visiting the doctors and being treated for thrush, I eventually consulted the sexual health services who diagnosed me with lichen sclerosus and advised there was no cure but to use a steroid cream daily and that it was a lifelong condition. I've done some research and read that dieting...

    3 replies 0 votes Last reply
  • Cheetah 4

    Dermovate. How to use leading up to biopsy?

    I hope you don't mind if I ask another question.  Saw a dermatologist this week and am now waiting for another biopsy to be done - this time at the hospital.  The dermatologist told me that, in the meantime, just use the Dermovate enough to make me comfortable.  At the moment my vulva is quite inflamed...

    10 replies 0 votes Last reply
  • Cheetah 4

    Sanex or Simple shower gels OK to use?

    I'm waiting for my second biopsy at the moment. I'm always very careful not to use any shower products that are perfumed, so wondered if it's OK to use something like Sanex or Simple shower gels. Any advice?

    11 replies 0 votes Last reply
  • liz96551 2

    Is and herpes

    I have had herpes for 34 years and got diagnosed with LS 5 years ago- both are flared now due to stress, heat and too much chocolate- any one else have this dual issue?

    13 replies 0 votes Last reply
  • dawnj 1

    ZOON,S VULVITIS

    HI. I HAVE JUST BEEN TOLD I HAVE THIS CONDITION. GYNO HAS SAID TO USE A HYDROCORTISONE ACETATE CREAM 1% TWICE A DAY. I HAVE TRIED THE CREAN BUT I AM STILL VERY RED & BLEEDING AT TIMES. CAN ANYBODY HELP ME IF THEY HAVE THE SAME CONDITION ALL THE BURNING AND ITCHING IS VERY UNBAREABLE. HELP. THANK...

    9 replies 0 votes Last reply
  • lane22589 2

    cant stop crying,please help

    does this look like lichen sclerosus?its kind of itchy and thought it was a yeast infection, clomatrizole relieves the itchiness momentary, but its still itchy. id appreciate it SO MUCH f you took the time to answer.

    7 replies 0 votes Last reply
  • sophiecarroll 2

    Really scared about white hardened clitoris.

    Hi everyone, I'm 32, and have recently discovered that my clitoris has gone white and peeling, it also feels quite hard. I wonder if this sounds like LS? I'm petrified it's vulva cancer, although I don't have hpv (have been tested), I read that v.c. is not always caused by hpv. I'm scared, I saw gp last...

    12 replies 0 votes Last reply
  • Cheetah 4

    Does sitting makes things worse?

    Aged 71 and my biopsy result was 'chronic inflammation'.   I've noticed that things become worse - itchiness increases etc. - if I've been sitting for any length of time, usually in the evening, watching TV or reading.  I always use a spray of water and sometimes coconut oil after I've been to the loo....

    22 replies 1 vote Last reply
  • sylvia3146 1

    Lichen Sclerosus sufferer who is allergic to steroid creams

    Is there anyone else out there who has Lichen Sclerosus but is unable to use steroid creams? I have been suffering with LS for about twenty years. At first without much discomfort but last year at a time of extreme stress coupled with the need to travel to a hot country (stress, heat and travel are all...

    7 replies 0 votes Last reply
  • ChrissyC 3

    Atrophy in Lichen Sclerosis

    I've had LS about 2 years. I'm really lucky when I read the experiences of others as I don't have any irritation and don't really know I've got it on a day to day basis. My inner labia simply developed white edges. Consequently I haven't bothered with the cream I was prescribed. What is worrying me is...

    164 replies 4 votes Last reply
  • debbie18443 2

    Lichen Sclerosus small lumps?

    I was diagnosed with LS about a year ago and have been in almost constant flare/pain since then. Ive tried many different moisturisers and two different steroid creams/ ointments plus typical HRT, all with limited and short-lived success. Usually my symptoms are red, sore, splitting, blistering and tearing....

    3 replies 0 votes Last reply
  • j14251 2

    Itching

    Diagnosed with LS almost 1.5 yrs ago (at 44). Have had intense itching for two yrs. Dr performed biopsy, came back with LS. My only symptom is intense itching. Always at night. It wakes me up and will only subside when I scratch. I have scratched so much that the right side of my labia has scar tissue....

    16 replies 0 votes Last reply
  • norma54754 3

    Is Lichen Sclerosis hereditary?

    Today I telephoned my sister who lives in another part of the country and I don't see very often. Nothing unusal about that but the revelation that she also suffers with LS stunned me. She only disclosed this to me because I told her that I had recently been diagnosed with the condition. Thinking I was...

    32 replies 0 votes Last reply
  • lauren33630 3

    Hormonal/menstrual links to LS

    Hi, I know a fair few of you are pre or post-meneopasal so this might not apply to you if you are newly diagnosed.  But I've read that for many younger women the menstrual period is a real problem fro triggering LS and I'm looking for some info or input from ladies who experience this.  I'm a lifelong...

    3 replies 0 votes Last reply
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