‘This Is What It’s Like To Have Lichen Sclerosus, A Rare Skin Disorder That Causes Seriously Painful Sex’

"I struggled to walk, bike, shift in my seat, and even use the restroom."


Lauren Krouse |

When my college boyfriend and I first started having sex in 2011, I believed that I’d been sold the biggest lie of all time. Terrified of STDs thanks to the abstinence-only sex ed at my middle school in Tennessee, I’d waited as long as I possibly could before what would be, as promised by some guy in a crinkly button-down, *the most awesome experience ever.*

Sex was not awesome for me. Lying on the pull-out couch in my boyfriend’s studio, I felt as if I was being torn apart. I thought you were supposed to heal after a possibly painful first sex experience, but instead I felt ripped up all over again every time we had sex. I struggled to walk, bike, shift in my seat, and even use the restroom, as every movement reignited razor-like pain all over my labia and vulva (the lips and skin surrounding the vagina).

For months, I dreaded sex. As a 19-year-old, wasn’t I supposed to be having the best sex of my life? Knowing I was supposed to enjoy it, I forced myself to go through with it. I bit my lip until it bled, dug my fingernails into my palms, and even imagined myself hovering over our bodies, anything to rise above the pain. I never told my boyfriend just how painful sex was for me because I was embarrassed and didn’t want to somehow hurt his feelings or mess up our relationship by rejecting him. (As women are often conditioned to do in our society, I ignored my own well-being and needs to please someone else.)

Eventually, though, the pain became unbearable.

We had to take days or even weeks off from sexual activity to make sure I had time to heal from sex-induced skin tearing. And as months went on, part of me started to believe that this had to be how sex felt for all women.

When my friends gushed about their sexcapades (complete with multiple orgasms), I told myself that they were just lying to one-up each other. After all, I couldn’t dream of having even one orgasm, yet alone three, and in truth, I had already begun to hate sex. How could they actually enjoy that experience? And, if they were telling the truth, something had to be deeply wrong with me, right?

Back at my parents’ house over spring break in 2012, I started Googling “painful sex” and “why is sex painful?” I’d come to learn that nearly three out of four women experience pain during sex at some point in their lives (a reality that was left out of my sex ed). But I was overwhelmed by the possible reasons for painful sex that popped up on the internet, so I finally broke down and told my mom.

To my surprise, she said she thought she knew what was going on, rushed upstairs, and returned with an old manila folder. She’d kept it ever since 1997, 14 years before, when the same series of super-personal symptoms had launched my family into crisis.

But as we sat down at the kitchen table together, I felt a wave of relief come over me.

I received a diagnosis when I was younger that I had never known about: lichen sclerosus.

As I learned, lichen sclerosus is the name for a rare and chronic (and not-so-pleasant) skin disorder that causes small, white lesions to appear on your vulva and the area around your anus. Over time, these spots can grow into larger patches, making your skin thinner and more prone to tearing. The result: pain, itchiness, bleeding, blistering, and scarring.

It’s not clear what exactly causes lichen sclerosus. It might be related to an overactive immune system, causing your system to attack your own skin, and your genetics (since it can run in families), per the National Institutes of Health. Although it can look pretty gnarly, it’s not contagious.

 

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Same pt as previous post. 4yo x 1mo. c/o “white spots” & vulvar pruritus. Dx: Lichen sclerosus (LS) (A.K.A. lichen sclerosus et atrophicus, LS&A), vulvar (see closely cropped pic) & extragenital (ELS). Mainly affects females (>85%). 70% of peds cases <7yo. Mean age of symptoms 5yo & dx 6.7yo. Mosaic distribution of ELS possible. Koebnerization, lesions in surgical scars, vaccination sites, & exacerbations of quiescent lesions may occur after local trauma/irritation. 15% have another autoimmune dz (e.g. morphea). Autoantibodies have been found against ECM-1, also BP180. Well-defined, pink to ivory white, slightly raised, flat-topped papules coalesce into plaques. Often purpura & widened follicular plugs in lesions. Over time, plaques become sclerotic/atrophied w/ fine “cigarette paper” wrinkling. White comedo-like openings on dermoscopy. Anogenital involvement in 75%. Of those w/ ELS, up to 42% have anogenital involvement. Always check! ELS usually asymptomatic. LS of lips less destructive, resembles vitiligo. Anogenital lesions commonly surround vulvar/perianal regions in hourglass/figure-8 pattern. Occasionally extends to inner thighs. Genital LS in children: itching (70%), soreness (80%), dysuria (43%), bleeding (61%); constipation in >10%. Of girls w/ vulvar disease or pruritus, 18% & 11% have LS, respectively. Vaginal discharge may precede LS in ~20%. In many, erythema, purpura, blistering, excoriations predominate, esp. on labia minora/clitoris. LS often misdiagnosed as irritant dermatitis or sexual abuse. Associated constipation/dysuria often leads to unnecessary GI/urinary tract testing. Dx usually can be made clinically. Topical clobetasol tx of choice. 83% of children get remission after initial tx, but relapses occur and may require yrs of intermittent or maintenance tx. Tacrolimus 0.1% oint. another option. Tx of ELS more challenging; when extensive, phototherapy & systemic meds may be needed. LS complications include atrophy of clitoris/labia minora, w/ fusion of labia & stricture of introitus. Vulvar LS in childhood does not predispose to neoplasia. #mysterydiagnosis #lichensclerosus #pedsderm #globalderm #globaldermatology #pediatrics #dermboards

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While anyone can get lichen sclerosus (including boys and men), it most often affects older women. Less than 10 percent of cases are in girls who have yet to hit puberty, per a review in the American Journal of Clinical Dermatology. It’s not known just how many people have lichen sclerosus, partly because many doctors may not recognize it, plus the symptoms can be super embarrassing and tough to talk about when everyone else seems perfectly normal. What’s more, because it’s so uncommon in kids, it tends to take nearly two years to get an accurate diagnosis.

In this sense, my case was typical. Some of my earliest memories were spreading my legs for doctors and being condemned to oatmeal baths, a variety of ointments, and unscented bar soap to avoid irritating my bizarrely sensitive skin. Because my skin tore so easily, I tried to postpone using the restroom as long as I could (and often cried in pain, hunched over the toilet), I couldn’t stop itching my private area, and, to my mom’s horror, my vulva and anus eventually started bleeding and scarring.

These were typical symptoms of untreated lichen sclerosus, but they unfortunately also resembled signs of sexual abuse — and my primary care doctor became suspicious. As my mom told me, a social worker had me play with puppets at my pre-school and followed up with a home visit, flooding my parents with panic and prompting them to question everyone they’d allowed near me, searching for answers.

Thankfully, my parents took me in to see a dermatologist for a second opinion. With one glance, this derm knew exactly what was going on, diagnosed and treated me properly, and my case with social services was closed.

As I grew up, my symptoms went away during my adolescent and teen years, so my parents assumed that I was in a remission of sorts. My skin cleared up and healed, and the pain and itching stopped. And over time, I got sick of plain bar soaps and started using scented Bath & Body Works products again with no issues. All I really remembered from that time in my life was that I had sensitive skin. But for most people, including me, lichen sclerosus does (unfortunately) come back.

After learning about my medical history, I scheduled an appointment with a derm and was diagnosed again.

I visited a local dermatologist in Tennessee, and I was sent home with the go-to treatment, an ultrapotent topical corticosteroid cream called clobetasol propionate, which helped dial down my body’s immune response to ease the itching and pain and allow my skin to heal.

While I’d have to reapply the cream as needed for the rest of my life to keep my symptoms at bay (and check-in for regular exams, as lichen sclerosus could increase my risk of developing squamous cell carcinoma), I felt relieved. In a matter of days, the itching and pain faded away, and my micro-tears finally healed. After my diagnosis in 2011, I could explain to myself and my then-boyfriend what was going on — and work on communicating about what I actually wanted and needed in the bedroom.

These days? At age 27, I’m in remission yet again (and have been for six years!). I’m lucky in that I don’t have any significant long-term scarring, and as such, my current boyfriend had no idea about my underlying condition until I told him just recently, in light of this piece.

Sex, at last, is pain-free. And it’s pretty awesome.

This article was originally published on www.womenshealthmag.com

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