Going public about a private disease.
When I was a kid, I was obsessed with medical mysteries.
Shows like Untold Stories of the E.R. and Mystery Diagnosis kept me glued to the TV in ways that no Nickelodeon or Disney show could.
Inevitably, my fascination branched out to include books, too. Jodi Picoult’s Handle With Care, which details the story of a little girl with osteogenesis imperfecta (or brittle bone disease) was my favorite book for years, being replaced only recently when I read Susannah Cahalan’s autobiographical Brain on Fire, in which the then 24-year-old journalist discovers that she has a rare brain condition called anti-NMDA receptor encephalitis that causes seizures, hallucinations, and psychosis.
I’ve always loved learning about strange illnesses and, as a result, have taken the liberty of diagnosing myself with plenty that I (shockingly) don’t actually have.
When I fell into a coffee table at 8 years old and needed a gash in my head stapled back together, I couldn’t wait to tell everyone at school that I’d gotten to spend New Year’s Eve in the emergency room. I felt like such a little badass.
A couple years later, in fifth grade, I got my first of many migraine auras (an episode with visual disturbances like blind spots and shimmering shapes that may or may not be followed by a headache and/or vomiting) during a standardized TerraNova Test.
I puked all over my Catholic school uniform skirt and got to spend the rest of the day wearing the pair of polka dot shorts I’d had on underneath. Score.
Over the years, those “episodes” (which had always been relatively predictable) turned into hemiplegic migraines, causing temporary numbness/limb paralysis on the right side of my body as well as the inability to speak and read. Thankfully (and unforgettably), my MRI results after the last one in 2017 deemed my brain “unremarkable.”
Mildly insulting, but in this case, I’ll take it.
Needless to say, from my own lived experiences and my medical fascinations, I consider myself pretty well-versed in the kinds of havoc the human body is capable of wreaking.
But a recent gynecological exam in October left me with news that I’m still wrapping my head around.
To my surprise, I had been diagnosed with a rare disease of my own.
“So, your vulva is kind of… melting,” my gynecologist said from between my legs.
Now, I’m no stranger to gynecological issues, either. When a bad case of undiagnosed mono in high school left me with genital ulcers (possibly the least-fun experience I’ve been through to date — I don’t recommend), my doctors were sure I had an STD despite my insistence that I wasn’t sexually active at that time. Thanks for listening, doc!
Years later, what I thought was a bad UTI turned out to be a ureaplasma infection, which I honestly still don’t fully understand.
Then, in 2017, a sizable ovarian endometrioma (a cystic mass composed of “tar-like fluid” and endometrial tissue — nice) revealed itself during a follow-up ultrasound after my IUD insertion (which has created its own issues in the 2 years we’ve been together, like 11-day periods… every month).
Despite each of these things, I was pretty shocked by my gynecologist’s proclamation.
“You have quite a bit of scar tissue,” she went on. “Are you aware of that?”
Picking up on my confusion, she grabbed a hand mirror for me to hold while she pointed to areas of my vulva that were, from a clinician’s standpoint, concerning. Meanwhile, a tidal wave of shame rolled in.
You know how people say that life flashes before your eyes right before death? That’s kind of how I felt in that moment, only in this case I was envisioning each time that I’d masturbated or engaged in any type of sexual activity. Had I been doing something wrong? I wasn’t sure if you could use a vibrator “the wrong way,” but if there was anyone who could manage to do so, it was probably me.
A licensed medical professional had just told me that my vulva was melting, so at that rate, I figured anything was possible.
She pointed to two lines on my labia majora and explained that they were actually areas of scar tissue where my labia minora had fused back into the labia majora. This is what she meant by “melting.”
Then, she pointed to a line above my clit that had been there for as long as I could remember. We were old pals, that line and I. Little did I know, it really had no business becoming one with the Body and Blood of Me. My gynecologist explained that, medically, that line was considered a “fissure,” or an area where scar tissue had formed as a result of fusion.
Additionally, even more scar tissue had formed around my clit and had resulted in clitoral phimosis, which basically means that the clit becomes buried behind scar tissue that’s grown over or around it. Clitoral phimosis also “frequently causes loss of clitoral sensitivity, which may cause secondary anorgasmia.” Makes sense, considering I’ve never been able to have an orgasm with a partner.
So… what the fuck?
“None of this is your fault,” my doctor said, probably to break the silence between us. “These are all symptoms of a condition called lichen sclerosus.”
Who is she and what is she doing to my body?
What is it?
Lichen sclerosus (LS) is a chronic inflammatory condition that is characterized by changes in the skin, such as thinning, scarring, and fusing.
The disease is most commonly seen in postmenopausal women, but it can affect children and men as well. It mainly affects external genital regions, but in some cases, it can affect the neck, shoulders, breasts, thighs, and mouth.
Causes for the condition are still unknown, but most research points to an overactive immune system, hormonal imbalances, and genetics. Lichen sclerosus does not affect internal reproductive organs like the vagina or uterus.
Additionally, LS is not contagious and cannot be spread through sexual intercourse.
- Itching to the nth degree
- Small white spots on the skin (early in the disease)
- Thinning and lightening of the skin
- Tearing, bruising, or bleeding from minor rubbing of the skin
- Changes in vulvar architecture (such as the disappearance of the labia minora and tightening of the skin due to the growth of scar tissue), indicative of advanced disease
- Pain during or after sex
- In severe cases, blistering and ulcerated sores
I (like many other women, I’m sure) have experienced almost all of these symptoms at some point or another throughout the course of my life.
Itching? Probably a yeast infection.
Pain after sex? Probably too rough.
Blistering? Well… maybe it’s time to see a doctor.
The point is, the symptoms for lichen sclerosus aren’t exactly unique. During multiple visits to my previous gynecologist, I’d mentioned that I was routinely in pain during or after sex, that I sometimes woke up in the middle of the night after unconsciously scratching myself to the point of bleeding, and that I overall felt like something wasn’t right.
And what was I met with?
“It’s probably a yeast infection,” or, “You should stop your partner if you’re ever in pain.”
I’m forever grateful to have found a gynecologist that genuinely hears me out and wants to find a way to manage the issues I have. It’s unfortunate that it took so long to address something that I’ve been dealing with since childhood, and because of the delayed diagnosis, my case is pretty advanced (i.e., irreversible fusion).
With lichen sclerosus, there’s no cure — but early diagnosis and treatment (most commonly involving the application of topical corticosteroids) can delay the progression of the condition.
I’ve still got plenty to learn about LS, and there are a number of groups and forums out there dedicated to discussions about treatment, changes in diet (which can reduce inflammation), and shared experiences that make it all a bit less scary.
If you know something isn’t right, don’t be afraid to speak up and seek help. While I don’t recommend being like 7-year-old me, diagnosing myself with every brain tumor and throat disease in the book (I really was convinced I was always dying), I do recommend responsibly listening to your body and investigating anything that seems abnormal for you.