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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

    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

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    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

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    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

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    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

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    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 3 Responses Apr 27, 2010

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    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

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    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

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    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

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    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

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    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

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    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

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    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

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    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

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    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 6 Responses Mar 8, 2013

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    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

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    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

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    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 3 Responses Sep 10, 2013

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    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 1 Response Nov 23, 2014

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    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 51-55, F 1 Response Jan 6

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    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

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    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

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    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

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    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

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    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

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    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

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    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

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    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

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    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

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    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

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    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

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    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

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    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

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    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

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    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

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    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

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    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

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    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

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    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

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    :(

    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

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    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

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    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

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    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

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    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

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    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

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    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

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