I experienced symptoms of endometriosis long before I became sexually active, but it wasn’t until my first serious relationship in my early twenties, and lost my virginity, that I understood the full spectrum of life experiences that the disease would take from me. But unlike the way it stole food and dance from me — which were associated with pleasure and, to the point of the former, pure survival — I didn’t recognize the impact it was going to have on my sexuality.
I had been instructed throughout my life — by older women, by books, by society — that I wouldn’t enjoy my first time, but that gradually sex would get better, so I should just stick it out. It was true that the first time was painful, but because I had been anticipating that, I wasn’t particularly surprised or disappointed. What did surprise me was that, despite the pain of penetration, I really liked everything else sex involved, the vast majority of which was brand new to me.
But it felt like having your hand slammed in a car door. My belly clenched, and I guess I made some God-awful noise, because he immediately looked down at me, a heaving breath away from a stilted apology.
I swallowed hard, tears pooling in the corners of my eyes and sliding down my cheeks as I smiled, telling him I was fine, to keep going. I had expected it to hurt, and it had hurt.
The problem was, it never stopped hurting — but it took me at least the first year of my relationship with Max to admit that something was wrong. It ultimately gave me a vital education of my body that would prove to be invaluable later on. The knowledge that intercourse was intolerable because of disease became an answer to a question I hadn’t found a way to ask.
We continued to have sex, but it never got better for me. As months turned to years, it steadily became more intolerable. While this never seemed to get a rise out of any doctor when I fretted over it, once I started taking Max with me to appointments, and he corroborated—or better yet, expressed his own frustration—suddenly it seemed like doctors started to listen. I was extremely peeved to have made this observation. It either meant that they hadn’t believed me in the absence of Max as an alibi, or that they had believed me, but my suffering alone wasn’t enough to inspire action. Becoming a disappointment to a man, though, seemed to do the trick.
"The knowledge that intercourse was intolerable because of disease became an answer to a question I hadn’t found a way to ask."
Now that they knew I couldn’t put out like a woman should, they had an abundance of suggestions. I tried birth control. I got an IUD. I did pelvic-floor physical therapy until it became too excruciating to continue. I have, in the name of pain management, had a varied assortment of objects inserted into my vagina: hands, garlic cloves, polished stone, colorful plastic “expanders” that are actually just medical-grade dildos, slick transducers and icy speculums, catheters, swabs, scalpels, and gauze. I saw homeopaths and naturopaths and took all kinds of tinctures and pill-pods. I drank raspberry tea until I could no longer stand the smell of it. I tried castor oil packs, I tried TENs units (that is, transcutaneous electrical nerve stimulation), and I held electric heating pads against my bare skin until they burned me. I lived in, and for, hot bathwater.
The gynecologists told us to try different positions, angles, and speeds, though I’d insisted that we’d already done that. We were a pair of virile twenty-somethings, so how did they not assume we had already repurposed every surface of our home and several undisclosed public locales for the express purpose of our mutual sexual gratification?
I was dubious that sexual positions with names like “The Viennese Oyster” or “Alligator Fuckhouse” were going to solve the issue of painful sex. The latter sounded more likely to cause it.
When it came to the pain, I had a difficult time articulating that it wasn’t at the opening of my vagina, which was what doctors usually thought when I said “sex hurts.” The pain emanating from my pelvis was much deeper than the pain women get with vaginismus—a condition where the vaginal wall and opening contract involuntarily to prevent penetration; it came from somewhere that seemed to me to be so deep as to be untouchable. It was heavy, full, aching. There was almost a soreness to it, like a tender bruise, but on the inside. The rhythm of penetration made what had become a constant, dull pain every day into a momentary swell of intense, staggering, asphyxiating pain. I waited for sex to feel like something I’d risk my life for. At first, I swallowed down the yelps, gritting my teeth against the sensation of my organs being ripped away from the pelvic wall, or torn up like plants by the stalk. Roots that I had put down with Max. Though I had been afraid at first, I had come to feel secured by them. Roots might trap and entangle, but they’re nice sometimes: when you’re grounded, not every gust of wind breaks your neck. Roots are also necessary for nourishment. For growth. So I braced myself against the pain of intercourse and told myself that growing hurt.
"[The pain] came from somewhere that seemed to me to be so deep as to be untouchable. It was heavy, full, aching."
It didn’t take very long for me to begin to dread sex altogether, despite the fact that I was madly in love with Max, very attracted to him, and certainly felt that I wanted to have sex with him. Over time, the anticipation of the pain made me reluctant. Max couldn’t help but take the rejection personally. How could he not? I was turning away from him. I was wincing at his touch.
At the beginning, Max tried to bolster my spirits during my many days and nights of pain and the endless string of doctor’s visits. I remember him sitting next to me as I sipped on pink contrast dye before a CT scan, saying, “StrawBarium Pink Drink is what they should call it” — and I had genuinely laughed at that. But with no signs of improvement, he had grown frustrated. His needs weren’t being met sexually, and he was absolutely right — they were not. Of course, my sexual needs weren’t being met either, but no one really asked me if I was sexually frustrated.
In the end, though, it really didn’t matter how much I loved Max, just the same as it had never mattered how much I wanted not to be sick. When we finally went our separate ways, I felt responsible. The continued intimation, on the part of doctors and society, that my inability to engage in sexual intercourse was somehow by my choosing, that it was something deeper than parts that didn’t work in accordance with my desires, only made me question myself.
"Of course, my sexual needs weren’t being met either, but no one really asked me if I was sexually frustrated."
If I was truly in love with him and attracted to him, wouldn’t I put up with whatever pain our intimacy caused? Indeed, I had, for quite some time by this point. I had buried my face in a pillow feigning pleasure when I was crying from pain. When I finally reached the point where I couldn’t lie about it anymore, my truth became a broken record that sounded like an excuse.
In the years after Max and I broke up, I tried to have sex with other men, thinking perhaps my broken body would magically fit together with someone else. It didn’t. I also tried to have sexual relationships that weren’t dependent on vaginal penetration. Those experiences were enlightening, and for the first time I had hope that I might be able to have some kind of sexual identity. Oddly enough, in the end, those sexual experiences ended not because my partner in them was dissatisfied, but because my overall state of ill-health (which caused me to become quite emaciated) became worrisome.
The outlook for my sex life, or even just intimate relationships really, has not been quite so bright. But I clung to every experience I had, every experience that reaffirmed I had known happiness and had been capable of love. That alone was worth grasping for.
Abby Norman is a science write and hosts a daily podcast on Anchor.fm. This is an adapted excerpt from Ask Me About My Uterus: A Quest to Make Doctors Believe in Women’s Pain by Abby Norman. Copyright © 2018. Available from Nation Books, an imprint of Perseus Books, LLC, a subsidiary of Hachette Book Group, Inc.