Post
Experience Project iOS Android Apps | Download EP for your Mobile Device

I Have Vulvar Lichen Sclerosus

Vulvar Lichen Sclerosus anonymous support group with information on diagnosis, treatment, symptoms, along with personal stories and experiences with Vulvar Lichen Sclerosus. You're not alone. 311 People

    I was finally diagnosed in 2003

    after seeing many doctors and being misdiagnosed. Not going to give a long story but had to share with everyone suffering from this. Ive tried EVERYTHING, but nothing has worked until about a month ago while on vacation. Went to an outdoor market and came across a stand selling...
    kimmi78 kimmi78 36-40, F May 15

    Your Response

    Cancel

    I've had lichen sclerosus

    for about three years, and I've been using Emuaid for about a year now - it has helped, but no cure. I thought it was a yeast infection because it turned my skin white and was itchy with a burning sensation. I decided to cut down on breads and sweets and it made a lot of...
    lookingforacure lookingforacure 51-55 1 Response Feb 4, 2014

    Your Response

    Cancel

    Hope Amid The Pain

    not really sure if this is a story or a journey, but it began about two years ago. Unable to see, I can't describe what things look like on my inner thighs, and on and around the vulvar areas, and down the skin flaps on either side of the bladder. It took a while for the...
    ableingod ableingod 61-65 1 Response Sep 9, 2012

    Your Response

    Cancel

    Lichen Sclerosus Not Fun!!!!

     I have all the same  problems you ladies have. The itching is terrible, the burning, thinning of the skin. I go without panties alot!!!. I had had laser surgery years ago. No hope!!!  I'm just using vaseline right now and taking motren for pain. My gyno. wanted me...
    gagirl55 gagirl55 51-55, F 10 Responses Jun 24, 2010

    Your Response

    Cancel

    Misadventures In Misdiagnostics!

    I was recently confirmed of having LS after 30 years of misdiagnosis as irritable bowel syndrome. I also got cancer (endometrial) and when the doctor was finished the surgery and closing me up, he could barely stitch me back together because there was very litte tissue without...
    sslo sslo 46-50 3 Responses Jul 7, 2011

    Your Response

    Cancel

    Odor With Lichen Sclorosis

    Does anyone else suffer from a horrible cat urine smell and discharge coming from the vaginal area, even directly after a shower?
    kljeffers kljeffers 51-55 4 Responses Mar 18, 2013

    Your Response

    Cancel

    Not Sure If I Have It,

    but, my mother does and i hear it could be hereditary :( she was diagnosed when she was around 30, i believe. and im 19. im very paranoid that i will have it, every time i even have a little itch i freak out. just thought id share, and i may not know exactly how you ladies feel...
    stefbuck stefbuck 18-21, F 1 Response Aug 8, 2010

    Your Response

    Cancel

    Perrins Cream

    I have Lichen Sclerosus. I have not had a biopsy yet, Dr. referred me to gyn. so I assume that will be done then. I have researched this and found "perrins cream" which is all natural and said to work for this condition. So, I found where it was available locally and the woman...
    MarlaMW MarlaMW 56-60, F 3 Responses Aug 30, 2013

    Your Response

    Cancel

    I Have Lichen Sclerosis And I'M Desperate For Some Relief!

    Hello everyone, I'm 24 years old and have been battling lichen sclerosis for almost two years, it started after I had an episiotomy after giving birth to my son, after the stitches dissolved I was suffering from a terrible burning sensation as well as itchiness and a lot of...
    KLP24 KLP24 26-30 2 Responses May 28, 2013

    Your Response

    Cancel

    Healing Vs.Cure

    I am healing slowly. I am 36 and had vulvar discomfort for over a year until I saw two important pearly white patches had appeared to either side of my vagina, while waxing actually. It had been very itchy but I thought it was a mild yeast bacteria due to stress. In fact, I made...
    deleted deleted 26-30 1 Response May 22, 2013

    Your Response

    Cancel

    Feeling Like Im Going To Scream!

    I have been dealing with this problem off and on for over 8 years. I am 27. I have tried everything under the sun to help it without talking to a dr about it. Well its been so bad lately that i am bruised from itching so much and cant sleep. So today i finally went to the dr. i...
    Miller0204 Miller0204 26-30, F 4 Responses Oct 1, 2013

    Your Response

    Cancel

    I'm not sure if anyone has tried it

    yet but, I've been using a cream called neogyn. Somewhat new to the market. Has been really helping me for months. My symptoms actually lessened so much I thought I was better ... Until the stress kicked in. But it does help!
    username2443 username2443 22-25, F 2 Responses Dec 23, 2013

    Your Response

    Cancel

    Still In Shock....

    I couldn't imagine what was going on down there, the pain, itch, soreness.. All out of the blue, went to the gyno, say's it's herpes??? What? No way I thought, came home did online search and pretty much diagnosed myself, back I go to the gyno still in unbelievable pain, I...
    t00ts2 t00ts2 46-50 4 Responses Nov 13, 2010

    Your Response

    Cancel

    I have LS and i have had it

    for 3 years had a biopsy after going to three doctors who said it was something else..one obgyn got it right.I have a'lot of symptoms like ache..throb..some itching.swelling after sex and yeah splitting .anyone else have this?
    blake222 blake222 46-50, F 1 Response May 19, 2014

    Your Response

    Cancel

    Finally Free Of This Problem

    This is my first time on a chat line and I am not sure if I will do it again, but I was searching for a product to help me with this crazy annoying problem and found one through a Master Chinese Herbalist and his name is Victor Shim. He gave me a couple of products and no word of...
    ancientalternatives ancientalternatives 56-60, F 2 Responses Sep 4, 2013

    Your Response

    Cancel

    I've had lichen sclerosus

    for about three years, and I've been using Emuaid for about a year now - it has helped, but no cure. I thought it was a yeast infection because it turned my skin white and was itchy with a burning sensation. I decided to cut down on breads and sweets and it made a lot of...
    lookingforacure lookingforacure 51-55 3 Responses Feb 4, 2014

    Your Response

    Cancel

    Try A Low Oxalate Diet!

    Here is a helpful link to a list of foods to avoid, foods to limit, and foods allowed. :) http:// www.upmc.com/patients-visitors/education/nutrition/pages/low-oxalate-diet.aspx
    healinghere healinghere 36-40 Nov 23, 2013

    Your Response

    Cancel

    Just Diagnosed

    I was just diagnosed with this.  I am relieved to find out what was causing the "crazy itching" I was experiencing.  Hope to get it under control.  Would also like to know more about it:  what causes it?  Will it go away for good?  If not...
    seabreeze32000 seabreeze32000 46-50, F 5 Responses Oct 19, 2009

    Your Response

    Cancel

    Lichen Sclerosus Is Making Me Depressed

    I found out that I have Lichen Sclerosus after the birth of my second son, which was almost five years ago.  I have been single since then.  I have no intention of finding a boyfriend/husband because of this horrible disease.  Honestly, what man is going...
    Renee68 Renee68 41-45, F 12 Responses Oct 31, 2009

    Your Response

    Cancel

    Hi there, I have been newly diagnosed.

    I also have DIV. I am very interested in Dr. Casabona over in Italy. I emailed him and I am anxiously awaiting a response. Does anyone have any advice as to what you need to qualify for him to treat you? Thanks!
    Ginalyn888 Ginalyn888 46-50, F Jun 22, 2014

    Your Response

    Cancel

    I am 39 years old and have been dealing with LS

    for about 10 years. It almost exclusively affects my perineum. I have had some minor tearing (paper cuts) but my main 2 symptoms have been intense itching and painful sex. My skin has never been paper white, but it has been shiny. I went to so many doctors - ob/gyn...
    TiffanyPerkins TiffanyPerkins 36-40, F Nov 23, 2014

    Your Response

    Cancel

    What Is Happening?

    Some brief history, I've struggled with vaginismus since I was 11 years old. At that time I could not even get the smallest tampon in. You can learn a lot about that if you have painful sex or the inability to have sex at www.vaginismus.com They have a support group and the...
    Brittany2013 Brittany2013 26-30, F 1 Response Jun 10, 2013

    Your Response

    Cancel

    Heal Vs. Cure /SECOND UPDATE!

    As suspected, official positive Lichen Sclerosus diagnosis today (biopsy was done three months ago). I started the cortizone treatment before the diagnosis, though. So, today is a good day for an update! Here it goes.  Still on a STRICT GLUTEN FREE DIET, paying attention to...
    healinghere healinghere 36-40 1 Response Jun 10, 2013

    Your Response

    Cancel

    Still Seeking Cure While Manging Symptoms

    I am 57 and basically extremely healthy. I eat organic food, i juice. I visit the gym 2-3 times a week and also dance zumba and bellydance. i have loving familial relations and lots of supportive girl friends. pets too : ) My prayer used to be for contentedness in my home and job...
    CTmoon CTmoon 56-60, F 1 Response Jan 23, 2013

    Your Response

    Cancel

    You Can Get Better....

    I have L.S....After being diagnosed with herpes, yeast infections, and chronic vaginitis, I finally saw a specialist. Once I found out it was L.S. and that it could be classified an auto immune disease, I did a ton of research. First, changed my diet...went completely organic...
    fourbygrace4 fourbygrace4 41-45 2 Responses Apr 3, 2013

    Your Response

    Cancel

    Support Blog

    I was six years old when I was diagnosed with lichen sclerosus. I had a feeling even then that it was something that would make me very strange. As a child, I had major discomfort, to the point that I couldn’t stay overnight anywhere because I would spend the whole night...
    mkc2013 mkc2013 22-25 2 Responses Jun 3, 2013

    Your Response

    Cancel

    My Ls Is Out Of Remission

    I have probably had LS since about the age of 4 or 5. I did not get formerly diagnosed until I was about 33 or 34. My gyno diagnosed me but later referred me to a dermatologist. I was treated with Clobetasol and it cleared right up. Saw pink skin first time ever! I used Protopic...
    texfiend texfiend 41-45 1 Response Nov 26, 2011

    Your Response

    Cancel

    Not

    Ive benn reading up on this and do not know if this is what i have but it sure sounds like it many visits to er,ob derm and still no answers. I never had any skin problems until oct 2012 and now i am suffer terribly. can stress bring this on my mom passed away in aug 2012 and...
    seekinganswershelp seekinganswershelp 56-60 2 Responses Jun 19, 2013

    Your Response

    Cancel

    Living With This

    Since i was little i can always remember my vulva being extremely itchy. I have been trying to get into my obgyn to get this taken care of because it has progressive gotten worse after having my son 16 months ago. The itch is unbearable, along with the discolored skin and sores...
    nw0309 nw0309 26-30, F 2 Responses Aug 16, 2013

    Your Response

    Cancel

    Lichen Sclerous

    I have lichens for five years.The doctor gave me cream but it gives me urinary tract infections.Does anyone else have this problem.
    maggie1244 maggie1244 66-70, F 3 Responses Oct 2, 2013

    Your Response

    Cancel

    Wow! Something Is Really Helping Me

    I have had LS for 3 years now. I have used triamcinolone cream,testosterone cream, perrins blend, and emu oil(blue). The triamcinolone seemed to help for awhile, but my LS had become worse to the point I no longer felt like a women! Frustrated, so frustrated I went to another...
    brandonna brandonna 31-35, F 4 Responses Sep 5, 2012

    Your Response

    Cancel

    It Can Get Bad!

    I have been going to doctors for1 1/2 years. And I was finally diagnosed when I went to my ob/gyn doctor. I begged her not to touch me but she first looked and tried to exam me and I almost flew off the table. It was decided that we would go to the OR and give me light sleep...
    Charlotte54 Charlotte54 61-65 1 Response Oct 28, 2013

    Your Response

    Cancel

    I Have Had Ls All Of My Life

    I have had LS all of my life and been afraid to tell anyone (except professionals) about it....well I was originally diagnosed with thrush so it was easy to tell people what was going on originally, but now....what do you say when you cant go to work, go for a walk, do personal...
    BusterBoop BusterBoop 36-40, F 3 Responses Feb 28, 2012

    Your Response

    Cancel

    I am 58 and seeing someone

    but I wont get into a relationship because I know I cant have intercourse. How do I tell him?
    vloz vloz 56-60, F 4 Responses Feb 25, 2014

    Your Response

    Cancel

    Help For Lichen Sclerosus

      Please read if you have Lichen Sclerosus! I had terrible pain, sores, lesions, itching, clitoris shrinking and all of the most horrific symptoms of LS in the vulva and anal area. I have found great relief maybe even remission from my symptoms of LS. I did...
    atooch atooch 46-50, F 12 Responses Dec 3, 2009

    Your Response

    Cancel

    I Think I Might Be Getting It

    I have had an itch ever since my sister went into hospital with mental illness in 1995 (I was still a virgin) and temperatures and pelvic inflammatory infections we would take her washing up to her and bring home dirty washing and she was always wanting use my underpants.. I...
    czaristacrystals czaristacrystals 36-40, F 3 Responses Mar 8, 2011

    Your Response

    Cancel

    :(

    sadly i was diagnosed last year with LS. I have had it since I was little. I have lost 90% of my anatomy and im only 20. I constantly feel like there is no hope with this disease because there is no cure. I hope to work with nurses in my area to start a support group for women...
    kariinaxoo kariinaxoo 22-25, F 1 Response Oct 1, 2013

    Your Response

    Cancel

    After Op

    I had a bladder and bowel op in January and since then all hell let loose I kept going to surgeon and GP with no success with this aweful soreness and when I needed number 2 it would pull and hurt the front , In the end my GP sent me to a dermatologist and she said its LS and...
    SugarPlum69 SugarPlum69 70+, F 1 Response Sep 15, 2013

    Your Response

    Cancel

    Worried About This Disease..... Please Help Or Let Me Know What Will Happen !

    For the past 6 months to 1 year, I have had unusual vaginal symptoms - lots of itching and painful sex.  I went to the doctor 3 times.... the first 2 times, he thought it was a yeast infection.  Finally, I got checked out by a female doctor and she diagnosed me with...
    HopefulAnnie HopefulAnnie 31-35 2 Responses Apr 27, 2010

    Your Response

    Cancel

    All Well After A Life Time With Lichen Sclerosus

    When I was 35 I had vulva laser surgery to remove the white plaque skin but as time past it would flare up again & again.  This past year I was so tired of this steroid cream not really doing much,, except for relieving itching, so I made an appointment with this same dr...
    Carole63 Carole63 61-65, F 4 Responses Apr 11, 2010

    Your Response

    Cancel

    Just One Thing After Another.....

    I was diagnosed about two years ago.  At first I thought "Well, I know what the problem is. Let's fix it."  Yeah. I know the biopsies are necessary.  I use clobetasol and vagifem and I still have ongoing trouble.  Several times I've thought I had a UTI because of burning...
    domesticqueen712 domesticqueen712 51-55 5 Responses Jun 3, 2011

    Your Response

    Cancel

    Newly Diagnosed With L.S At 63! Going Crazy With The Stress

    I had major surgery in May this year and had biopsies taken during it which confirmed my L.S. I am 63 years old! I was self treating, for all sorts including Thrush to No Avail. I am lucky in that I dont get the itching but mine is sore and very red especially outside where the...
    mygirl9 mygirl9 61-65, F 2 Responses Sep 10, 2013

    Your Response

    Cancel

    Ls

    I was diagnosed a couple years ago at 20, although I've had the symptoms for years. Mine is not only vulvar, it is in that whole lower area, front and back. I never understood what was going on; I only even went to the gynecologist to find out if it was a yeast infection, or...
    nuserkanin nuserkanin 22-25 6 Responses Apr 22, 2011

    Your Response

    Cancel

    Ive had Lichen Sclerosus

    for over 20 years now. I have pain everyday. Most days its hard for me to pee. I hate this illness.
    shawna2015 shawna2015 41-45, F 2 Responses Jan 11

    Your Response

    Cancel

    Dr Casabona

    I was diagnosed with Ls 9 yrs ago. It was not very active until 1,5 yr ago. Then things went quickly very bad. It affects my self-confidence and as a single person, I dare not start a new relationship or sexual engagementsbecause of this. I was treated by Dr Casabona in Italy. He...
    Masp Masp 41-45, F 4 Responses Apr 30, 2013

    Your Response

    Cancel

    Desperately Wanting My Life Back........

    Hi all. I first want to start by saying how extremely happy to have found this site as well as others. I have within the past two days loaded up on the most helpful information pertaining to this dreadful disease. After months of wondering what was going on with my vaginal area...
    mslegz mslegz 36-40 2 Responses Nov 6, 2010

    Your Response

    Cancel