The Thing I Don’t Talk About

Let’s get this out of the way immediately: it all began with a bad vibrator.

(That should give you the general gist of where I’m going with this: and I’ll include colors, sensations, alarming things like that. I am writing this post because I have discovered that the life-altering thing I went through is actually incredibly and increasingly common. So why couldn’t I Google it?)

* * *

A seventeen dollar vibrator, bought when I was just old enough to enter the sex shops, and not old enough to know there were better sex shops, ones where women more commonly go. (Also, that the best investment you can make in life is a vibrator that is at least eighty dollars — if not a hundred and twenty, if not a hundred and fifty. Think about your priorities here and save your pennies the fuck up.)

I bought it because it was pink, and that seemed nonthreatening. Pink with sparkles in it. This was a girl’s toy, a Barbie accessory: not some porno “you can fit that into where” horror. I bought it because it was seventeen dollars and I made five an hour bagging popcorn at the two dollar theater and anything over ten seemed like a lot. I bought it because it was pretty. I bought it because I didn’t know what to buy. My friend and I tittered like nervous mice in the corner, crunching the various plastic packagings in our hands in an attempt to gauge quality, until I brought one up to the counter.

“No rabbit, huh?” the woman clacked her gum.

That evening, I had some fun. Immediately afterwards the burning began: fire ants devouring me from the inside. I laid there in regret and gasped.

I should clarify: my youthful ignorance is to be blamed upon no one but myself. I had infinite literature on sexuality, the latest edition of Our Bodies, Ourselves, parents willing to talk about anything, anytime. On Take Your Daughter To Work Day, I gazed down the microscope into petrie dish worlds of squiggling sperm. And I can tell you now, in retrospect, that every time I used that vibrator I gave myself a yeast infection. But at the time it didn’t occur to me to question that this is how things shouldn’t feel. The burning would last for a day or two, and then go away on its own. And then I’d use it again, because that’s what you do.

In college I met a dear friend who was wonderfully infamous to me for putting inside of herself any damn thing she could find, just for kicks. (Let’s just say I never looked at the decorative Indian corn on her wall the same way ever again.) When I casually referenced how wretched things felt after I used my vibrator, she screamed. “Adrianne!” she said. “Put a condom on that thing! Always put a condom on that thing, everything, all of the time! It’s an ecosystem, it has a pH balance, respect it.”

And that’s how I discovered that God didn’t actually hate masturbation. (Okay, you caught me, I was raised by modern parents in mostly Unitarian Universalist faith: I’d never actually believed that. But this is the part of the article where that would typically be said.) And everything was wonderful, and when I lost my virginity it was great, and I had a lovely sex life for six years. No foreplay? No problem! Now? Yes! Again? Yes! Hooooooray!

It was a year and a half into the relationship with the man I thought I was going to marry when things took a sharp turn into the unbearable.

I’m not sure how detailed it’s necessary to get with this. We were, y’know, fooling around, and, y’know, mixing things up, when he offered to use a toy on me. We were out of condoms. “Oh well, so it’ll burn a little afterwards but I’ll deal. Let’s do this.”

A few minutes in, I had to ask him to stop. The burning was immediate and breathtaking. I laid there, holding my legs to my chest, unable to move. “You okay?” he asked.

I didn’t sleep that night. The next morning he was sweet enough to pick me up some Monistat 3, and I hobbled through those three days, slowly, somewhat improving. Day four was bearable, but we weren’t able to consummate it. I was still swollen and everything was bright red: intercourse felt like eating crackers with strep.

I gave it another week, and when I was still vaguely uncomfortable and entirely unsexable, I opted to hit up a natural foods store in my neighborhood to see what they would recommend. I was on a big tea tree oil kick at the time — it seemed like there was nothing it wouldn’t cure or prevent — and so I wasn’t surprised when the woman behind the counter told me to pick up a week’s worth of tea tree suppositories. Of course! The magic. I eagerly hobbled back home.

You may wonder, gentle reader, what it feels like to have tea tree oil inside of you? Well. Let’s just say that what you have in mind is probably correct, but add an unpleasant element of surprise, each time, and let that surprise sit there for a couple of hours. A bullet of cinnamon and mint shot inside of you, shrapnel ricochetting up your spine, into your rib cage, your whole insides an explosion of Listerine. I did that for seven nights. I no longer love the scent of tea tree oil.

This was when I decided to see a doctor. Nothing was quite helping. The itching was gone, but I was constantly red and swollen. Maybe I needed something prescription strength. Maybe I was misdiagnosing myself. I called my PCP and made an appointment with a nurse. I described what had been happening, and she shrugged. “Sounds like you just can’t shake it. Here’s a prescription for Diflucan, that ought to clear it up in a single day.”

I gave it three before I called again. They got me an appointment with my doctor, who after a brief exam also shrugged: prescribed me three week’s worth of Diflucan. I was nauseated for a month.

And. No. Difference. I called again. “Are you sure this is yeast? I don’t have any other symptoms, it just really, really hurts to have sex.”

What kind of hurt? A burning hurt?
Sometimes.

An achey hurt?
Sometimes.

An “I’m too small” hurt?
Sometimes.

Where is the pain usually?
Two places. At the entrance, where it’s mostly just burning and sore, and also about halfway in. Where it feels like a bone has broken in another part of my body and it’s jutting into my vaginal wall, and any time that area is touched, my insides cringe.

Huh. Are you using lubricant?
Yes.

Do you use foreplay?
Yes.

“Look,” a doctor told me, “people come in to me with problems, they think I can work magic. But bodies are peculiar and hard to figure out. Some problems just can’t be solved. You may need to start thinking about how you’re going to live with this.”

Live with this?

I cried in his office. They referred me to a women’s clinic, where, as it happens, I would waste a year of my life just trying to get an appointment with a gynecologist.

What if, what if. What if I’d given up on that clinic earlier. Would that have saved my relationship? What if I had ended that relationship earlier. Would that have . . . I don’t know, done anything?

The problem with the women’s clinic was, they kept scheduling me with nurses when I asked for gynecologists. It took three months to even see the nurse, who would say “I don’t know, we should schedule you with a gynecologist.” Appointment booked, I show up three months later, and I’m seeing a nurse again.

In the meantime they put me on Flagyl, thinking it might be bacterial vaginosis, which has similar symptoms to yeast. They put my boyfriend on Flagyl, thinking he was re-infecting me. I was simultaneously on Difucan and Flagyl at the same time, since both medications can inspire the opposite problem, pushing the pH balance in the other direction. One nurse was repeatedly convinced I had Trichomoniasis, a parasitic STD. “My partner and I are monogamous,” I told her. “Uh huh, so you think,” she replied. “Let’s test you again.”

The results were always the same: no trich. And testing for yeast and BV is tricky, because neither are foreign to the vagina: the problem is when there’s an overgrowth. And so they do a wet mount and take a look at a swab of you under a slide, and if it looks like there’s too many of one thing, they say you have a problem. Each time, I was told “welll . . . it’s a grey area. You’re definitely red and irritated. So we’ll try prescribing x.” I was told to stop biking, to stop wearing underpants and anything tight at all, to stop having sexual contact, to stop shaving my bikini line and legs, to stop using tampons or the Keeper, to obsessively clean everything I wore, to use nonscented everything, to essentially be terrified of anything that could come into contact with the vulva. I was showering one morning and realizing I had very little to do in that shower. I couldn’t do any of the things I usually do to make myself feel female, which to me meant desirable.

Meanwhile, I had met and gone over my health insurance deductible, and I was no better off than if I had seen no one at all. If anything, the problem was getting worse: I couldn’t be touched at all without discomfort. I felt constantly dry, scratchy, bruised. Try navigating that in a romantic relationship for months. I held ice packs to my crotch at night before bed.

“You may just be reacting poorly to all these treatments,” a nurse suggested.

Finally, I saw someone at the women’s clinic who became my beacon of hope. She was a midwife, about my age. She gave me my mantra. “It’s not acceptable for sex to hurt. It’s not normal. Don’t tell yourself that it is. We’re going to fix this for you.” And she wrote me the referral for the gynecologist.

I was feeling weepingly optimistic when I walked up to the receptionist to make that appointment — the appointment that guaranteed me an expert. I went to their front desk and pounded my fist on it. “I need to see a gynecologist. A real gynecologist, not a general doctor, not a nurse, not a midwife; I’ve been trying to see a gynecologist for months. I just got a referral. Please schedule me as soon as you can; I work from home and can make any appointment you have.”

The receptionist was maybe seventy years old with a mouth like a tired anus. She clicked a chipped manicure onto her 1992 keyboard and peered through her glasses.

“It looks like you can see that doctor in December.”

“So that’s . . . three months from now. Like usual.”

“Mmm hmm.” She looked up at me, peering through those glasses. “Would you like the appointment?”

Ffffffuck yyyyouuuuuuu!

“No,” my voice cracked. “No, but I’d like the paperwork to transfer my records to another clinic, please.”

Thankfully, I had recently tried to educate myself on these things, and ordered The V Book online to rave reviews. It was accessible and kind, full of information none of these nurses or doctors had been telling me: and specifically, I was interested in learning more about something called Vulvodynia. (I asked a nurse at the women’s clinic once if she thought I had it. She asked me what that was.) And when I’d looked up information about the author, I’d realized her clinic was a mere half hour drive from my apartment.

They booked me within weeks.

At the new clinic, they took centimeter deep samples of flesh out of the entrance to my vagina to examine the skin cells. They prodded my insides and out with a long q-tip and made a diagram of where my pain was, and they handed me the diagram. I was given numbing cream to put on 20 minutes before intercourse — don’t put it on your clitoris, you could permanently desensitize yourself, and don’t get it on him. It was nice to at least have as an option.

Finally, I was prescribed an anti-swelling steroid suppository, a prescription which had to be filled at an apothecary: and after using that, I was about 70% better. Glory! Things were almost tolerable. Unfortunately it was not advised that they prescribe it to me again, as the steroid could thin the vaginal wall, which would have much worse long-term effects. So my boyfriend and I continued to wait it out, with the numbing cream and, because I feared the numbing cream, almost entirely abstinence. My romantic relationship had become full of guilt, fear, sexual attempts and failures, boredom, tearful nights. I told Jurvis he could leave me. I told him I thought he was leaving me. I told him he should leave me. I suggested we have an open relationship, albeit one that obviously couldn’t be too open on my end. He refused these things, but didn’t deny his grief over the situation.

It wasn’t the reason we broke up. But in retrospect, I know that it didn’t help.

Shortly before my breakup, I was in fact diagnosed with Vulvodynia: essentially, “confused nerve endings.” Sensations that were supposed to be pleasurable, my brain was reading as painful. Vulvodynia isn’t really diagnosable on its own: it’s a “everything else has been ruled out” diagnosis. And it can be passing, or it can be lifelong. They handed me informational packets and directions to a support group that met once a week, forty five minutes away.

I had been unable to have sex at that point for a year and a half.

When I started seeing someone else, I told this person I was broken. “Unfortunately I don’t really function as a woman,” I told him. “Just, you know, heads up.”

“Don’t worry about it,” he said. “We’ll never do anything that hurts you.”

He drove me to what was to be my last appointment at The V Book doctor’s. This time, she handed me literature about anti-psychotics. “We aren’t saying you’re psychotic,” she was careful to say. “It’s kind of the last resort. We don’t even know why anti-psychotics work for this. It’s not a mental thing. Something in them retrains your nerve endings, maybe. You’d be on them for three months and then we’d take you off. It works for a lot of women, but does have side effects. Would you like a prescription?”

I hadn’t tried intercourse with a new partner yet. I took the brochures home and told her I’d think on it.

Painless intercourse didn’t happen overnight. We worked up to it, always stopping the minute there was any discomfort. But each time, I was able to go a little longer. “Five minutes this time!” I’d high-five him.

Within a month, I was having completely back-to-normal sex. No medications, nothing. What?

The first time it happened, I didn’t understand. I had come to physically believe that sex meant pain, that that was normal. I was certain I’d pay for this later. I’d wake up the next morning burning, curled into a ball. Right?

But it didn’t happen.

Instead the next day found me walking around blissfully, overwhelmed with gratitude and joie de vivre. Not because I thought I was cured; I assumed that it would be back to my regularly scheduled programming the next time we tried. But because I’d been given this gift, even if just once, to know what pleasurable intercourse felt like again. It turned out, the worst part of all of this had been that fading memory.

Forgetting what nonpainful sex had felt like had fundamentally changed my outlook on life. I had become suspicious of good feeling, of the tangible, of my own body. Each time sex hurt had made me angrier at myself, the incomprehensible universe, sometimes both. Things just get ruined for no reason, I thought. I can’t predict or control my own flesh. The body lies, nerve endings get irrevocably confused, things fall apart!

But. The pain still hasn’t come back.

Holy. God.

Vulvodynia is the kind of thing that can hang around for a while and then go and never come back. Or it can hang around forever. Or it can hang around for a while, leave for a while, come back for a while, leave. Surprisingly, in talking to friends, I’ve found that about a quarter to half of them have had one of the above experiences. One of them has had it her whole life, has always lived around it. Another found it specific to one emotionally volatile partner, but never since. One has it come and go, and so she always keeps the numbing cream around. Many of the others talk about “weird, long phases in which sex was so painful it was impossible.”

But if I hadn’t told them about my own experience, I wouldn’t have known. We don’t go around broadcasting these things. I think there’s some element of shame for the condition itself — as I said, it personally had made me feel like a “broken woman” — but also, there’s just not much discourse about female genitals. Maybe it’s easy because they’re hidden. They’re in some sense perpetually considered alarming, new territory. When I was prescribed the NuvaRing a few years ago, the Planned Parenthood nurse told me there was one disadvantage: I’d have to touch myself “down there.”

If not for talking about it, I could have thought I was alone, cursed, crazy. If I hadn’t read the book I could still be in that women’s clinic waiting room, with a fistful of useless prescriptions: wondering what was wrong with me, how it had gotten to this point.

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7 Comments

  1. Wow. Now I completely get the “up until 3 AM” explanation. Feel free to be late for things in the morning anytime if it’s because you were writing something like this.

  2. May women everywhere read this. And their partners. Thank you for the story, the openness, the detail, and the amazing writing.

  3. Fascinating and frustrating and wonderfully written! I’d read about vulvodynia on my vaginismus blogs (maybe we could talk about things more openly if they were easier to say), but only in fairly clinical terms. Nothing like this. Thanks for writing it!

  4. As reported through some of your public radio colleagues:

    “One-third of women experienced genital pain during their most recent sex, compared to 5 percent of men…citing this as an area warranting further study.” LINK

    Thanks for writing this out by the way! Really educational. I’m such a chicken about openness but your writing here continues to be an inspiration to me. Thanks!

  5. My ex (broke up for different reason, but it didn’t help (as above)) suffers from this, I’ve always believed. I hope she finds this article, and some hope.

  6. Thank you for this article! A very good read, and educated me on something I haven’t experienced personally, but good to know! Especially if I have a friend who has experienced, or is experiencing, this :)

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