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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:

    206 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.

    17 replies 12 votes Last reply
  • chinney 2

    soreness

    Hi, i have had this for some time now. I was infected with herpes many years ago. Last year i thought i was having an attack of herpes,went to clinic to get the tablet and was told it wasnt herpes, he said it was lichen planus, however seeing the doctor follwed by seeing my consultant who didnt

    6 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

    4 replies 2 votes Last reply
  • jill4444 2

    Lichen sclerosis with no itching..

    Hi, I am new to this site and am desperately wondering if anyone has LS with no itching? I went to my GP early last year with a tiny cut and whilst examining me she casually announced I had a 'bit' of LS. I was given a fact sheet with a tube of Betamethasone valerate 0.1% cream. I have only used

    9 replies 0 votes 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

    501 replies 5 votes Last reply
  • jlb824 2

    Itching and tearing after 1st Mona Lisa

    Hi, so I had my 1st Mona Lisa treatment over a week ago. The dr. told me it would feel like a sunburn afterwards and it wasn't to bad. They just told me to use Aquafor. About the 4th day intense itching starting and tearing. I have been taking baths in baking soda. I don't think I should use the

    2 replies 0 votes Last reply
  • jackie43784 2

    Progress

    hi everyone! Has anyone noticed that this damn disease is still progressing even when you have no itching or soreness!  It does it silently and when you look you have more fusing!   

    9 replies 0 votes Last reply
  • shirley1951 2

    Has anyone had an outbreak in your mouth?

    After biopcy, My GYN confirmed I had Lichen Sclerosus. He has me on the creams. When I went for my follow up a couple of weeks ago I told him I thought I had the same thing breaking out in my mouth. He said you can not get it in the mouth.  The symtoms seemed the same except the liesons in my mouth

    15 replies 0 votes Last reply
  • jackie43784 2

    Honey

    has anyone tried medical grade honey for their fusing or any other symptom of LS?   

    0 replies 0 votes Posted
  • jackie43784 2

    Unfusing

    has anyone had any serious success with unfusing?   My clitoris is completely covered over and as such is not sensitive! Not good !  Please let me know if you have an answer ladies!   

    51 replies 1 vote Last reply
  • Nelsmydog 3

    Double Z Plasty with VY advancement

    Anyone had one of these?   Its an alternative to a fentons procedure and is designed to sort out that bit of skin at the entrance to the vagina which keeps splitting. I am going in on Friday to have it   i have had to wait since I saw the surgeon in October, but although i am nervous, I

    31 replies 0 votes Last reply
  • CanadaLS 2

    Diagnosed and having issues dealing with it all.

    I don't know how this post will go, so please bear with me if I ramble. I’m 34 years old and my issues started after the birth of the second child. I spent over a year in so much pain and discomfort, that it hurt to wear underwear. I was eventually given a biopsy and it came back as "chronic inflammation"...

    13 replies 0 votes Last reply
  • Guest M

    LICHEN SCLEROSIS - GOOD NEWS STORIES

    Hi, I have been suffering with LS for a couple of years but have only just been diagnosed. I am trying to keep positive about this condition and would really love to hear from fellow sufferers who are managing their condition well. I am particularly interested in hearing from women who have found

    32 replies 0 votes Last reply
  • yvonne97979 2

    lichen scelerosus,thyroid ,Breda cancer

    in  the last 15 months i have been  treated for all of the above,had a masectomy then found out i had a thyroid problem  which i had radioioden treatment ,then dr told me i had Lichen scelerosus. i have read all the comments and it really frightens me ,at present only using the cloberstone cream it

    3 replies 0 votes Last reply
  • NTKT 2

    Clobetasol Not Working... Need Help Please!

    My wife was diagnosed with LS a little over a year ago at the age of 27.  Her first symptoms were severe itching and pain in her genital region.  As with many sufferers, this caused trouble with daily life at home & work and much trouble sleeping.  After months of various visits to several

    25 replies 0 votes Last reply
  • debbie18443 2

    Rebounding from steroid withdrawal?

    Just wondering if anyone else out there has had a similar experience to me? I've been on Clobatesol around 11 months. From the start I was unconvinced that it was helping me and felt I might even be allergic. Doctors and dermatologist however were dismissive and advised me I must continue the

    5 replies 0 votes Last reply
  • kay79190 2

    thank you thank you thank you

    Thank you soooooo much ladies. have just spent the last 2 hours reading your posts. I was diagnosed yesterday with LS and have been in panic mode and unable to eat or think of anyhing else since. I feel soooo much better having read your posts and have ordered Borax on ebay and cant wait to get

    11 replies 1 vote Last reply
  • Gillian1956 4

    Biopsy

    Had s biopsy today from just inside the vagina must say feeling very sore I had one before but that time I didn't have a stitch put in they used somthing else to seal it i found that more comfortable I'm finding it very sore to go and pee how long before will I feel less sore ?

    9 replies 0 votes Last reply
  • jessica39636 2

    Young Lichen Sclerosus Sufferers

    I am a female who is 25 years old and has recently been diagnosed with Lichen Sclerosus. I have taken it upon myself to do a lot of research over the last few days and noticed that there is not a whole lot of information about this disease for younger females. I wanted to start a discussion that

    10 replies 4 votes Last reply
  • Cheetah 4

    Thyroid problems and LS?

    I've got an appointment with a dermatologist coming up, but not until June.  However, I've been reading that LS is often linked to thyroid problems.  I have problem with temperature - frequent flushing and then feeling very cold, even when others are warm.  I also suffer from fatigue.  How common

    9 replies 0 votes Last reply
  • Chris1230 2

    Clitoral and Labial Fusing

    Hello everyone!  It has been a LONG time since I posted here but have been reading for two days.  Not sure exactly what I'm looking just some reassurance or someone to talk to. To start, I am 53 years old now and am officially menopausal.  Over the last 10 years, I've had my one or two

    11 replies 0 votes Last reply
  • jackie73005 3

    Vaginal dryness and lichen sclerosis

    i have vaginal dryness and lichen for about 2 years I am 60. I have controlled them with yes products and dermovate but just lately I feel really worried because the entire area feels red and swollen. Please help or advise. I do not want sex with my wonderful husband because I am so sore.

    3 replies 0 votes Last reply
  • callianne 65675 4

    My weird LS Symptoms?

    About 5 years ago (excuse me for being graphic if I am but I can't think of ways to explain this and sound ladylike really).  About 5 years ago after intercourse,  I felt pain on my vulva near the opening. When I looked there, there was like a blood blister that had popped?With black and purple

    13 replies 0 votes Last reply
  • elizabeth08662 2

    Perianal

    I suffer from only perianal cuts and pain. I keep that area very clean, and use clobetasol twice daily . The tissue tearing is very painful. However, what to use on the red inflamed skin? I take baking soda baths, use laxatives to prevent straining but the pain is constant? Can I use Estrace on

    12 replies 0 votes Last reply
  • pwatkins 1

    Sex with Lichen Sclerosus?

    I was diagnosed with LS a I was not sexually activity that aspect of it didn't affect I am 18 and have started having sex the skin has been torn, or is use cortisone cream but it isn't there anyone with LS who now enjoys sex? What did you use or do?...

    3 replies 0 votes Last reply
  • jill21030 2

    Red and sore

    Since my initial diagnosis a couple of years ago and being prescribed clob steroid cream I haven't had a repeat of the dreadful itching but am now very red and sore all around my genital area and the tops of my inner thighs. I went to a pharmacist for advice and she advised me to use lanacane cream,...

    8 replies 0 votes Last reply
  • maybes 1

    instillagel etc

    hi everyone i've just recently had a check up with my doctor who performed a laparoscopy on me and realised i didnt have anything wrong with me inside i had LS. i have also been going to the gum clinic at my local hospital as i get free creams etc there ( i am a student !!! ) so when i first went

    4 replies 0 votes Last reply
  • ashleyk1997 2

    Depression & hopelessness.. biopsy next step?

    Feeling very down right now. I feel like I'll be in pain for the rest of my life regardless of creams and medications. My next appointment is in may. My symptoms have not improved so I'm afraid the Dr will send me for a biopsy. What should I expect? What comes of that? Are there any surgeries that

    6 replies 0 votes Last reply
  • mary09950 3
  • marey 6
  • 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

    159 replies 4 votes Last reply
  • jeannie61 2

    Does anxiety make it worse?

    Was wondering if anyone can help. My vagina ofter feels hot and uncomfortable. I use the dermovate cream twice a week. It makes me feel anxious. I even wonder if my anxiety makes it worse. Like to hear from anyone else with the problem.

    8 replies 1 vote Last reply
  • Cheetah 4

    If inflammation clears up before I see the dermatologist?

    Apologies for asking yet another question.  'Chronic inflammation' was the biopsy result and I'm using the Clob about once a week.  I'm using a water spray after going to the toilet and moisturing with coconut oil.  I've stopped wearing pant liners and am wearing skirts more often than trousers.  

    8 replies 0 votes Last reply
  • anne07585 2

    Seen by two different gyno's now really confused!

    After 18 months of miss diagnosis by my GP I saw a lady gyno who disguised me with Lichen Sclerosus. I had white scarring and complete fusion of minor labia. Was prescribed Dermovate ointment. Follow up was with a male gyno. He found an ulcer on inner side of right vaginal opening. He said I

    16 replies 0 votes Last reply
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