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. 328 People

    Anyone Found A Specialist In This?

    I have multiple sclerosis, and was just diagnosed with lichen sclerosis. Doctor said they are not connected, but no cure for either of them and no understanding what causes them. I am overwhelmed! And freaked out! I want a relationship with a man but I can't imagine how this...
    Tellingstadt62 Tellingstadt62
    61-65, F
    7 Responses Mar 8, 2013

    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
    5 Responses Nov 13, 2010

    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
    5 Responses Oct 1, 2013

    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

    Cured. Strict, celiac gluten free diet,

    thyroid treatment. Used cortizone treatment initially for a Few weeks. It took a long time but it is as if nothing ever happened....
    healinghere healinghere
    36-40
    1 Response Sep 22, 2015

    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
    61-65, F
    3 Responses Aug 30, 2013

    Recent Diagnosis

    Diagnosed with Vulvar LS in August, recovering from biopsy 1 1/2 weeks ago (ugh), and now think I am getting symptoms on my upper body.  Am interested in connecting with other women with LS to get more info, helpful ideas, etc.
    angelannie43 angelannie43
    46-50, F
    10 Responses Oct 5, 2009

    So Sad... So So Sad

    I found out I had LS in 2008. Sex was uncomfortable. I felt a spot that always felt raw. Got a biopsy done and it was stage 2 cancerous. It has gotten worse in between 2010-2012. I am now on the strongest steroid ointment there is. It has ruined my sex life and is ruining my...
    Momma1978 Momma1978
    36-40, F
    4 Responses Jul 12, 2013

    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

    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
    3 Responses Dec 23, 2013

    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
    2 Responses Sep 9, 2012

    I finally got result of my biopsy ,

    I have lichens sclerosis and also skin surface thrush, my consultant has advised 3 months of high dose steroid creamnand thrush cream, just hope this works ! Genitals have shrunk and one labia fused, obviously has big effect on sex life or lack of one, feeling uneasy.
    Herbywoman Herbywoman
    56-60, F
    1 Response Jan 6

    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

    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
    3 Responses Apr 3, 2013

    Vls Kept At Bay With Mcarthurs Paw Paw Cream

    Hi to all sufferers, I have VLS and this cream has been a godsend to me, mind I am in early stages but no itching and soreness. Please see the link below for International orders, I do not have any interests in this company but just want to share. www.makeuwell.com.au or www...
    jaybeme jaybeme
    51-55
    2 Responses Oct 22, 2013

    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
    66-70, F
    3 Responses Sep 10, 2013

    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
    56-60
    3 Responses Feb 4, 2014

    I was diagnosed a little over a year ago lichen

    sclerosus had completely changed my life I don't talk to most if my family and the two I do it's just superficial and my husband know how to be supportive so I have no one to talk to
    qeysha qeysha
    26-30, F
    3 Responses Nov 30, 2015

    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
    61-65, F
    4 Responses Feb 25, 2014

    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
    2 Responses Oct 28, 2013

    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
    41-45, F
    1 Response Nov 23, 2014

    I Have Lichen Scel.

    Hi , I am Cammie,51 age, and was diagnosed this week,at the docters. I am still upset about it because it seems incurable and can have devastating effects. It started itching just two months ago,and I could see the skin changing and found on the internet what it could be ,but was...
    Cammie61 Cammie61
    51-55, F
    4 Responses Oct 2, 2012

    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
    1 Response Aug 16, 2013

    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

    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

    :(

    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

    I was diagnosed with LS in 2013

    and have suffered greatly and I'd like for people to know that if you get your immune system re-energized you can beat this issue. I tried many, many suggestions from different forums and nothing seemed to help until I found a way to strengthen my immune system. I would be...
    judycd judycd
    66-70, F
    Dec 11, 2015

    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
    5 Responses Mar 18, 2013

    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
    3 Responses May 19, 2014

    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

    21 Yrs Old With Symptoms For Past 14 Years.

    I apologize for this graphic description but I'm sick of "walking on eggsells" around this mess.  I'VE HAD ALL THE (SEVERE) SYMPTOMS OF LS FOR 14 YEARS NOW. Im only 21 years old. Its horrible.  Im too scared to see a doctor--Im afraid its evolved into cancer. I know its stupid...
    lovesflowers14 lovesflowers14
    18-21, F
    10 Responses Apr 25, 2011

    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
    13 Responses Oct 31, 2009

    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

    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
    3 Responses Jan 23, 2013

    Help With Clobetasol Application

    I need help with the clobetasol application. I can't do it, I can't hold the mirror, the flashlight and the cream at the same time I move the vulvar lips to apply the cream. I'm very anguished by the hole sittuation, I have just being diagnosed with this disease. Can anyone...
    irup irup
    22-25
    6 Responses May 20, 2011

    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

    my goal is to connect with lichen sclerosus

    sufferers like myself and create some kind of support group even if we meet once a year I want to find a way to spread awareness so we don't feel so alone
    qeysha qeysha
    26-30, F
    1 Response Dec 2, 2015

    Long story short. I have had LS

    for 2 years. I have tried Clob, Protopic, low oxalate diet, honey, Crisco, with no success. What IS working for me is a low sugar, low wheat, low fruit diet I saw quite a bit of improvement in a short time and then I added L-Lysine ointment a few times a day and taking L...
    Ann2711 Ann2711
    56-60
    1 Response Jul 4, 2015

    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

    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

    Why It Is Sometimes Hard To Sit!!

    It's not the most pleasant condition to have, I am 58 and have had LS for just over a year.  I tried to self medicate for a good 10 months or so until  my whole vulva are was red and infected and I could hardly sit down.  I was treated for thrush for another few...
    verityjane verityjane
    56-60
    2 Responses Sep 29, 2010

    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
    2 Responses Sep 15, 2013

    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

    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
    3 Responses Sep 4, 2013

    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

    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

    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

    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
    2 Responses Nov 26, 2011

    Complete Remission Achieved After 5 Years Of LS Hell

    Hi. I've had LS for about 5 years. The past year was unbearable. The itching was so intense that I would claw at myself to inflict pain as I could tolerate the pain but not the itching. I was experiencing atrophy. The only help my OB/Gyn and Dermatologist offered were...
    MedicalMom MedicalMom
    41-45, F
    4 Responses Feb 16, 2013

    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
    3 Responses May 15, 2015

    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

    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

    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, 2015

    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
    56-60
    2 Responses Feb 4, 2014

    I was diagnosed with Lichen Sclerosus 2 years

    ago (at age 58) after noticing a lot of itching and a small sore that would heal and then break open again in the area where I had 4 episiotomy incisions in the past. I had pretty good control with Clobetasol ointment until a big flare up this year that spread the white areas...
    grifflee54 grifflee54
    61-65, F
    2 Responses Mar 1, 2014
More Stories