“Do Fingers Count?” Vulvodynia, Medical Heteronormativity and Me
It’s 11:30 pm and my vagina hurts and I’m sobbing.
Picture the scene: Lying in bed, knees spread, towel wrapped like a diaper between my legs. My physical therapist said the towel could hold the dilator in; I’d never managed the trick, but I appreciate the veneer of modesty, even alone behind my closed door.
When I remember to do it regularly, using the dilator is annoying, inconvenient and a little bit gross. Now, I’m picking it back up after a few weeks of forgetting, and it hurts — a deep, sharp sting that’s all the more infuriating for how pointless it feels.
About a year ago, I was diagnosed with vulvodynia, chronic pain of the vulva. It’s one of those diagnoses that comes without any answers: doctors don’t know what causes it, and didn’t recognize it as a real disease until recently. (Isn’t it funny how often poorly understood, under-researched pain diseases primarily affect people with vaginas?)
The most common symptom is painful intercourse, and for some people it’s debilitating. But since I’ve never tried penetrative sex, my symptoms are barely noticeable: an expectation of pain at my annual gyno exam, a lifelong difficulty with tampons. If I hadn’t been seeking treatment for co-occurring pelvic pain, I might have never even noticed it.
Yet in the year since I’ve been diagnosed doctor after doctor has told me, with great conviction, that it’s a problem if I can’t and don’t have penetrative sex — which is how I’ve come to spend a couple nights a week with the world’s least sexy dildos. My doctors are convinced that, despite all my protests to the contrary, I may, someday, want to be able to be penetrated.
The implication — that I need to endure a painful, mortifying treatment regimen to make sure I’m ready if an interested phallus ever came along — makes me feel intensely ashamed in a way I’ve struggled to shake.
My physical therapist is a kind, older woman who likes to talk about movies while feeling around the muscles of my pelvic floor. When I asked her why I should bother with the dilators at all, she assured me it was worth it. Think how convenient to be able to use tampons, she enthused, and how pleasant to avoid excruciating pain with a speculum exam.
“I don’t think you need to go up to size large,” she said — the size that corresponded to a penis. It was more understanding than I’d gotten from any other doctor, but it seems like an extraordinary amount of effort and angst to avoid ten minutes of pain once a year. So I’m an inconsistent patient, doing it only occasionally, which, of course, makes it hurt more.
Intellectually, I get that the dilator helps relax the pelvic floor muscles around the vaginal opening, a genuinely useful function for managing chronic pelvic pain — though, weirdly, not one my doctors often discussed. They focus single-mindedly on sex, and it poisons the whole endeavor. What’s wrong with me, that I need to regularly stretch out my vagina? (That’s not what it’s doing, I remind you and also myself.) And who am I doing it for, since it doesn’t feel like it’s for me?
From the moment my mysterious chronic pelvic pain landed me in the ER, penetration and my ability to endure it was a theme. When the ER doctor sent me for a transvaginal ultrasound, I showed up braced for pain. Instead, the tech performed a regular, external ultrasound, then looked at the order again and asked: “Have you had sex?”
“Um.” It wasn’t a question I was ready for. “Yes, but I’m a lesbian, so…”
If I were a different person — bolder, or at least more blunt — I might have answered differently. “I’m pretty sure I don’t still have a hymen, if that’s what you mean.” Or, “Do fingers count?” But I’m awkward to my core, so I trailed off, leaving the tech looking somewhat alarmed.
“I just need to know if you’ve had intercourse. We can’t perform the test if you haven’t.”
Intercourse sounded heterosexual. “I haven’t,” I confirmed, and was released to put my clothes back on.
Later, I was annoyed — what if there had been an urgent problem, and I’d been denied the test I needed because fingers didn’t count? But at the time I was just relieved to have been spared another round of pain and embarrassment. I never got the ultrasound results.
After the ER visit, I was referred to a urogynecologist with a months-long wait. When I finally arrived at the appointment, it seemed like everything went wrong. The doctor ran an hour late, forcing a flurry of flustered Slack apologies to my boss. I was so anxious that when the nurse went to take my pulse, the machine thought I was having a heart attack. I sat for ages, taking deep breaths until they could get a less dire reading.
The doctor herself was brusque, asking a few cursory questions before putting me up in the stirrups. The room felt packed with people; one nurse smeared jelly on my pelvis for a bladder scan, while another stood by the computer, taking down the numbers the doctor called out as she conducted some sort of incomprehensible vagina-measuring.
“Does this hurt?” the doctor started asking, prodding a spot on my vulva. “How about this?”
There was a sharp prick of pain against the deeper burn of the speculum. I was still riding waves of panic, mortified, desperate to be done. I’d like to say I snapped, but it came out a watery whine: “Yes.”
“It shouldn’t. I’m just barely touching you with this.” The doctor held up the implement so I could see: A Q-tip.
“Do you have pain with sex?” she asked, showing real concern for the first time.
I didn’t, but I wasn’t quite sure what she would count as sex and was too embarrassed to broach the topic. I hedged. “Um, I’m not currently sexually active. And I’m a lesbian. So…”
Her brow furrowed. “But you could still do penetration.”
“I haven’t really, though.” I shrugged, silently praying she’d drop it.
“You might want to someday.” She was not dropping it.
“It doesn’t really interest me.”
She frowned and handed me a patient education pamphlet, a referral to physical therapy and a prescription for an expensive topical cream.
As a cis lesbian, I’m not the typical patient for this disease — and when my doctors don’t know what to do with me, I’ve had to figure some things out for myself. Vulvodynia is classified based on whether or not symptoms appear the first time a person has intercourse, meaning PIV, leaving me unsure where I fall. Treatment focuses on addressing pain with sex — a problem I don’t currently have.
When I appeared in my urogynecologist and physical therapist’s offices, yelping at a Q-tip, they made some assumptions about the direction my treatment should take. And their assumptions made me feel terrible. All the doctors agreed about what kind of sex I should want to have, and how much pain and inconvenience I should be willing to endure to have it. Their certainty made me feel that must be the one who was wrong about my own body and desire. As a queer person, that’s not an unfamiliar message: it’s just a phase, it’s a sin, it’s not real sex.
After about a year of appointments, angst, and sitting around with a dilator in, this is where I’ve landed: My treatment goals are “get through my annual gyno exam without crying.” At check-ups, my doctor has toned down the questions about my what kind of sex I’m having to a brief, “Still not sexually active?” — embarrassing, but an improvement. I graduated physical therapy with orders to keep using the dilator “two or three times a week,” a frequency I do not meet but vaguely aspire to. I dread the day I have to explain this routine to a new girlfriend, but that’s a bridge I’ll cross when I get there.
Because I’m not wrong about my own body. I decide what discomfort I tolerate, what symptoms I care about and what kind of sex I have, heteronormative bullshit be damned.