When a chronic pain syndrome made sex excruciating, our writer found relief from the most surprising source.
Three months after my 30th birthday, I got my first round of Botox. But lest you think this is a story about vanity, or fear of aging, I assure you it is not. Botox, as it turns out, does more than iron out a few wrinkles. It’s giving me back my sex life.
The first time I had sex, it was exquisitely painful. My hymen was unusually intact for someone who took five dance classes a week, according to my doctor. But by the time I met my husband, Eric*, seven years ago, I loved sex. Until I didn’t.
I don’t remember when the pain started. I do remember that I bled after, that it stung to pee, and that I was swollen almost shut. I made an appointment with my then-gynecologist, who told me I had a yeast infection and sent me home with a week’s worth of anti-fungal medication. When that didn’t work, he thought it was bacterial, and prescribed an antibiotic. And when that didn’t work, he said that a little pain and blood was “perfectly normal”—so many times, at so many appointments, that I began to think that maybe he was right. That I began to forget that there was a time when I actively desired, and enjoyed, sex with my husband.
It was time I found a new gynecologist.
On a friend’s recommendation, I saw a midwife, rather than a doctor. I told her about my recent history of sexual pain—and my gynecologist’s dismissive suggestion that it was “perfectly normal.” She responded, “Did your previous gynecologist have a vulva?”
She referred me to a specialist, because she wanted confirmation from her to see if I might have something called “vulvar vestibulitis syndrome,” or VVS, which is one of many varieties of vulvodynia, a chronic pain syndrome that affects the vulva and surrounding area. VVS is specific to the vestibular region, which is to a vagina what an architectural vestibule is to a house. That is to say: the outermost entrance, through which people pass rather than linger.
As much as 16 percent of the female population suffers from VVS, though if you haven’t heard of it, you’re not alone. There’s no single known cause, and it affects women of all ages, races, and sexual orientations. It can manifest in different ways, but nearly all women diagnosed with the syndrome report pain during sexual intercourse. Some patients can’t even insert tampons. Most of these women develop anxiety at the notion of vaginal intercourse, which exacerbates the symptoms.
In my case, while I could use tampons, sexual penetration hurt; friction hurt. Worse, I began to withdraw from Eric’s attempts at initiating physical contact, hearing the word “vestibulitis” echo in my brain every time. On those increasingly rare instances when we would have sex, the anxiety increased the pain during and after. We were drifting apart physically, and it was putting a strain on our new marriage.
Last August, I had my first appointment with Dr. Struthers*, who explained that she would be using a cotton swab to touch different parts of my vulva and the lowermost part of my vaginal canal to discern where the pain was located. I was asked to respond to each poke with a number from one to ten, with one being no pain at all, and ten being agony.
I was spread out on the gynecologist’s exam table, my feet in stirrups. Dr. Struthers was working in a counterclockwise spiral, starting at her twelve o’clock—my clitoris—and moving slightly deeper with each completed rotation. On her third pass, when she moved from more external sex organs (e.g., labia, mons) into the vestibule, my numbers climbed from twos and threes to sixes and sevens. When she hit five o’clock with her swab, I felt an involuntary instinct to kick her in the face. “TEN! Ten-ten-ten!”
She popped her head up. “That was good,” she said.
“Good?!?”I asked, still gripping the table.
“You’re very responsive. It makes my job easier.”
I’d like to say I didn’t experience any more “tens.” I’d like to say that I wasn’t eventually crying from the pain. But I did and I was. Before I got dressed, Dr. Struthers pulled out a hand mirror and showed me the places on my vulva that were most problematic. She confirmed the midwife’s suspicion: I did indeed have vulvar vestibulitis.
Dr. Struthers handed me six prescriptions—three that I could get at my local pharmacy, two that needed to be compounded by a specialty pharmacy, and one for “internal” physical therapy—and told me that treatment for vestibulitis usually took between six and nine months to take hold. During that time, I was not allowed to get pregnant—and Eric and I had plans to start a family soon after the holidays.
I got in my car and called Eric. “The good news,” I started confidently, “is that I have a diagnosis.”
“And the bad news?”
I took a deep breath, and then burst into tears. “It’s going to take at least six months before I start to get better. And we can’t get pregnant until I start getting better.”
“Yes,” he said. “But then you’ll be better.”
“But our plans—”
“Can wait. Listen to me, I don’t care if we never have a baby, if it means you’re healthy.”
I tried to remind myself that up until my appointment that morning, I wasn’t even sure that I was ready to be a parent. It was Dr. Struthers telling me I couldn’t that was so upsetting.
As it turns out, my dance background is important to my medical history. My physical therapist, Raven Sims, explained that high-tone pelvic floor dysfunction, a symptom of VVS, is commonly found in dancers and other athletes because their undiagnosed sacroiliac (SI) joint dysfunction can stress the muscles of the pelvic floor, causing them to remain constantly clenched. That my pelvic pain was almost entirely localized on my left side, and that I also have hip bursitis on the left side, causing additional stress on that SI joint, made sense.
Following our first appointment, Raven gave me a list of daily exercises to help my SI joint and the muscles of my pelvic floor relax. Bridges and leg lifts and lots of stretches. Familiar exercises for a former dancer, which struck me as somewhat ironic given that dance may have caused, or at least facilitated, my condition.
In mid-October, I wound up with a third-degree foot sprain, forcing me to use crutches to get around—crutches that would require me to violently push off the ground, and land with, my left leg. The seat of all my sexual dysfunction.
Dr. Struthers was dismayed to see me on crutches at our follow-up appointment a few weeks later. She said any progress I might have made since our first visit had been reversed by the crutches.
Enjoyable sex seemed a lifetime away; procreation felt like an impossibility. The room spun.
To help mitigate some of this new damage, Dr. Struthers recommended three trigger-point injections to those pelvic floor muscles that were experiencing the worst spasms. She promised they would work like “instant physical therapy.”
With my consent, Dr. Struthers spread my labia with one hand and inserted a needle into my vagina with the other. Each shot pinched, then stung—worse, as expected, on my left than my right. After she finished, she presented me with two small, white, featureless dildos, one slightly larger than the other. “These are dilators,” she said. Dr. Struthers went on to explain to me that I should use the them about three times a week, for ten minutes at a time, at bedtime. I’d start with the smaller one, then move up to the next size, and eventually, probably to a larger size still.
After I dressed, Dr. Struthers told me I should make another appointment for January—but with a new clinician, Dr. Cynthia Hall. Sadly, Dr. Struthers was leaving the practice. I would miss her, but she assured me that I would be in good, and extremely qualified, hands.
Dr. Hall had clearly read my chart before my appointment. When she entered the small exam room, she introduced herself and said: “It’s good to see you’re off the crutches.” I had given them up just before Christmas. She went over a few questions to get caught up on my history and asked me if whether Dr. Struthers’ trigger-point injections had been effective.
“I’m not sure,” I told her.
“What do you mean?”
“It seemed like a bad idea to experiment while I was walking wounded.”
She had me lie back so she could begin her examination. Dr. Hall hit each of my most sensitive spots quickly, feeling each area for herself to make sure her observations corresponded with Dr. Struthers’ notes.
“How would you feel about trying the trigger-point injections again?”
“I mean, they weren’t exactly fun. But I’m open to it.”
Dr. Hall proceeded to explain that while Dr. Struthers had injected me from the inside, she found she had better luck if she went in transperineally—from the outside vaginal muscles, in. She would use a finger to guide the needle from inside once it had pierced the muscle, which would mean more pain but better precision.
“But if I do this,” she told me, “you have to promise me that you and your husband will have sex sometime in the next five days, before the injection wears off.”
Dr. Hall then produced the longest needle I’d ever seen. “Here,” she said, handing me a rubber stress ball marked with the name of a pharmaceutical company. “You might want this.” I slid back down into the stirrups and she instructed me to take a deep breath in. As I began to exhale, she said: “You’re going to feel a little pinch.” And then, I felt what was decidedly not a pinch. I squeezed down hard on the rubber ball as she repeated the process at several different injection points. “I hate doing this,” she said, hearing me stifle a shout as the needle hit a particularly tender spot. “But I love what it does.”
When the contents of the syringe were completely empty, Dr. Hall told me she’d be providing me with another prescription—this one for another compounded medicine that I’d have to use twice daily, “for a long time. Possibly forever.”
She looked me in the eye. “Call me with an update next week. If these injections work, you could be a candidate for Botox. That would work the same way, but instead of lasting five or six days, it could last for five or six months. Maybe even longer.”
The idea of injecting de-activated botulism into my pelvic floor was not one that thrilled me. Still, if it meant that Eric and I could have the kind of sex we used to have, it was worth a shot.
Spontaneous sex is best, but we had a busy week. Suddenly it was Thursday evening, leaving us no time for seduction. “The doctor says we have to have sex. By tomorrow. So, can you do me?”
We got off to a rocky start. I was still having a little trouble tuning into my desire, but soon I realized, for the first time in a long time, that I didn’t feel like I was protectively tensing every muscle in my body. Eric entered me easily, so much so that I was almost startled. “It doesn’t hurt,” I whispered in his ear. Instead of merely ignoring the pain, I could enjoy our time in bed.
I called Dr. Hall with the good news, and scheduled my appointment for Botox.
When the day came, Dr. Hall greeted me in the examination room with the syringe and needle: “twenty-six gauge, 90mm,” she told me. Over three inches long. As with the trigger point injections she’d given previously, Dr. Hall would be making multiple transperineal injections—what she called “specific targeting.”
The odds that the injection would help me were good, she assured me, but it could take a few days before I’d notice a difference, and it could be two weeks before I’d be certain if the injection didn’t work.
I lay back on the table, nauseated, waiting for the same pain as the last time.
“How did the Botox go?” Raven asked as I walked in the door. It had been eight days since my injection.
“I’m hoping you’ll tell me.”
After the usual examination of my alignment, Raven had me strip from the waist down and cover my lower half with a paper sheet. She inspected the external skin for the first time since my initial visit, declaring it “rosy pink”—apparently an improvement. Then, sliding a few lubricated fingers inside me, Raven began her internal work. “This actually feels really good,” she told me, pleased.
She progressed to the deeper kegel muscles on my right side, stopping at the coccygeus muscle, near my tailbone—a place she had never able to reach before—and pronounced that my right-side muscles were now “perfectly normal.”
Raven then performed the same process on my left, the problem side. It was tighter than the right but she told me it was “much better than the last time.” She was finally able to reach the coccygeus here, too, and could access more of some of the other muscles than she had previously.
“Things look like night and day,” Raven beamed. The Botox was working. I needed to stick with the dilators and try to go deeper with them; to facilitate, Raven added an exercise—she calls it “prepping the canvas”—a way of manually relaxing the muscles from the inside, to help accommodate the dilators I had and, eventually, to get me up to the next size. If I kept-up my therapy, medication and exercises, Raven told me, I’d soon have a normal vagina, or some approximation thereof.
For the first time since beginning this whole process, I could see the light at the end of the vaginal canal.
The morning after my appointment with Raven, I ignore the alarm telling me that it’s time to get up for my Saturday yoga class and opt to stay in bed and read. Eventually, Eric, who had gotten out of bed earlier to feed our obnoxious cats and to watch a little early-morning English footy, comes to check on me.
I pull the covers aside and invite him to join me. Eric is tender, cautious, responsive. The sex we have is still nothing like it had been before the pain started, nor is the pain wholly gone, but there’s a palpable improvement. I’m able to clear my mind and be in the moment.
Afterward, as Eric softly strokes my thigh, I lie beside him so thankful that I married a man who wouldn’t hold my condition against me or resent me for it. He told me that he wanted me to get better. And—slowly—I am.
*Some names are changed.
Hi there and thanks for reading. Here at DAME, our goal is to cover the uncovered, to speak truth to power and ensure that the media reflects ALL of us. But we need your help. If you like fearless independent journalism, become a member. You’ll receive members-only content and some swell swag. Become a supporter today.
AN INDEPENDENT FREE PRESS HAS
NEVER BEEN MORE IMPORTANT.
Your financial support helps us continue to cover the critical policies, politics and social changes impacting woman and their allies.