The doctor’s appointment lasts twenty minutes. That’s all. She barely even looks at me, probes me once or twice, hisses a sympathetic eesh, then absently announces the name of the problem I’ve been having for six years.
When I was sixteen, they looked like pimples. At eighteen, my gynecologist told me that if I really wanted them to stop, then I should stop wearing tight clothes. At twenty, my mother lamented my “future” sex life: How is a boyfriend going to look at you?
At twenty-two, I finally sign up for my own health insurance, so here I am, pulling my pants back on, the doctor already removing her gloves.
“It’s called hidradenitis suppurativa,” she says, the trashcan shutting with a thwap.
My first thought is that it’s a stupidly long name. But then, it’s a stupidly long-lasting problem.
The doctor is a Latinx woman very pretty in the way my friends in medical school will make pretty doctors themselves–probably under forty, thick black hair gathered into a low ponytail, bags under her eyes. When she knocked on the door, she walked in with only half her mind present, the other working on perhaps forty-six things at once. Growing up surrounded by family friends who were doctors, I hadn’t realized how friendly I had assumed the profession to be until I smile at her and receive nothing back. Somehow, it still all adds up to a recognizable picture that I already trust.
In very plain terms, she explains that I have cystic acne on my genitals. Even though that’s not even the completely correct term for it, because suppurativa isn’t caused by dirt getting trapped inside pores or the subsequent build-up of the flesh’s detritus. There are pockets under the skin of my mons pubis and outer labia that rapidly engorge with pus and blood and deflate every few weeks like clockwork, taking up residence in different areas over the course of years. One is sometimes nestled right up against my thigh, others shoot up just beneath the lip of my underwear, still more peppering the terrain of my outer labia. Over the years, the number of them has slightly increased to about five, to the point where old ones eventually scar over, leaving raised bald spots in my otherwise wiry, dense bush. They’re nomadic little things, deciding on their own when it’s time to close up shop and move a few millimeters over.
Google it, but only if you’ve got a strong stomach. The pretty doctor sends me off with a printed out webpage from the Mayo Clinic, and sitting in the car, I go down the list of symptoms, ticking off every one, mildly alarmed by every picture of rope-like rows of pimples on these people’s ravaged armpits and shoulder blades.
At the time, I am fresh out of an almost-relationship, still trying to not care about a boy who didn’t really want to be with me. It was the most consistent sex I’d ever had in my life, and the whole time, I had worried about my problem–I slipped into conversation that I’d recently been tested and come back clean, I turned off the lights before pulling him closer, I dreaded the possibility of a pimple popping during sex.
But none ever did, because I didn’t have breakouts during sex. Hidradenitis suppurativa only flares up before and during my period, and I’d literally never noticed. I’d never had period sex.
So my mother didn’t really have anything to worry about. In all the months we’d been loosely hooked to each other, he hadn’t even noticed anything wrong with me. Well, he must have, but evidently it had not been my suppurativa.
The makeshift pamphlet continues that there is not much known for sure about my disease, but dermatology’s best guess is that it is hormonal, at least in women. This is why, about a week before my period, the cysts will swell and burst and heal and scar over in a matter of days, like insect life cycles, and this will happen for every period that I will have until menopause, and even then, probably after that.
I sit in my car with that implication. I drive home, sit on my bed some more, try to ignore the soft tightness in my underwear that signals a new flare-up.
Of course I’ve always picked at them. But I get much worse at it after the appointment. Every time I pull down my pants to sit on the toilet now, I reach for the tweezers to find something to poke at or lift out, like a hobby. At work, I kill time in the bathroom, roving over every inch of my skin, my soft, scar-ridden mound, inspecting every hair follicle, every possible bump. I never really know what my skin is hiding–one squeeze anywhere could yield wax or a blackhead or a rush of pus.
Sometimes, they rupture while still underneath my skin, and I watch the pus rush into the top layer of the bulb. When I press my finger to it, they are shifting and white, so unmovable and stubborn before, now free to haunt the tunnels that years of their predecessors have wrought. When I jab them with my tweezers, the pus oozes harmlessly, willingly, relieved. It’s always an alarming amount, but the alarms are muted now, only instinctive, blaring down some distant corridor.
The pamphlet concludes that there is no cure for hidradenitis suppurativa, only treatments, only smaller, less painful cysts. The dermatologist recommends I take a new birth control, which helps for a time.
I no longer have a sense of doom when I look at my scars and my cysts. There is no longer the sense that I should be doing something about them, I no longer dejectedly fantasize about one day having a smooth pornstar mons pubis. I don’t look at my friends and wonder why I’m the only one going through this, because the truth is that many other people are. Hidradenitis suppurativa is one of the most common skin diseases in the world, but many people are undiagnosed for a variety of reasons. Maybe they have a very mild case like mine, so it’s not worth going to the doctor.
When I was a teenager, I just thought I was dirty. I thought this was my punishment–this was what happened when I touched, he touched, anyone touched. As I grew older, I knew this wasn’t true, but that kind of thinking sticks in your brain like a mouse in a glue trap. As a teenager I picked guiltily for my own relief, I picked so that I could simply stand without throbbing in pain, without feeling my skin unpeel from my flesh. I picked and watched globs of white pus and muted red blood slide out of me, pinched my skin harder to expel it all, knowing it would never be enough.
Now, I can notice a flare-up building as soon as I wake up in the morning, just by shifting my hips in bed. It’s a certain dullness to an area, the sudden pressure that wasn’t there the night before, the tightness of the skin when I stand up to brush my teeth. Anything can cause them to pop on their own, especially walking. Even just sitting at my desk all day can pop them. So I take matters into my own hands sometimes, and maybe this turns into slightly obsessive behavior, but who cares? I realize that I don’t, really.
So I pick and pop and gain a higher pain tolerance. When I cobble together enough money for a Brazilian wax, the esthetician hesitantly looks down at my flaking, barely-healed scabs, and I urge her on, it’s fine, they always look like that. When my scabs prevent the hair from growing back and ingrown roots bloom beneath my cysts to add another aggravating layer, I run my tweezers under hot water, hold a towel to myself, and begin to dig. More often than not, I leave a neat pile of folded, bloody toilet paper on the bathroom sink, the lone long hair a prize on top.
On many occasions, I leave holes in myself, perfect circles, as though I’ve taken a hole-puncher to the top layer of my skin. Now, I know these are expanded, infected hair follicles freed of their occupants, who will inevitably return. I take an ibuprofen and wait for them.
My suppurativa is mine. I am free to pick at it and squeeze whatever I can from my pores, because it doesn’t matter. Picking at it will not make it worse, will not make it dirty, will not save me from the partner of my own hormones. Medically speaking, there is nothing causing my hidradenitis suppurativa. Dermatology has no cure to give me–my body just likes to create pimples down there.
I figure that’s fine, then. At least I like to pop them.
Megan Conley is a writer, graduate of the University of Maryland, College Park, and an alumni of the Jiménez-Porter Writers’ House. Her work has appeared in Glass Mountain, STYLUS, Anime Feminist, and others. Originally from New Jersey, she currently works as an assistant editor outside of Washington, D.C. She typically rants about whatever book she is reading on Twitter at @fatorangecat_.