Conversations with Friends with Endometriosis

All my life, I had looked for answers in books, and I was no different when it came to endometriosis.

Late one Saturday night in 2020, I had finished watching a wildly underrated horror film and was getting ready for bed. I stretched to shake out some of my on-the-couch-too-long lethargy, and I felt something ping inside me. Seconds later, pain poured into my abdomen and pelvis. I spent the next three hours curled on my bath mat, unable and unwilling to leave the bathroom, bleeding heavily and unsure if I’d vomit.

An ovarian cyst had burst. Luckily, it was tiny, but ovarian cysts are like kidney stones: They’re small, but the pain they bring is tremendous.

For two decades prior to this agonizing evening, I had been experiencing twisting, stinging, and stabbing pain during my menstrual cycle; ultra heavy periods; exhaustion; and massive mood swings that no medical professionals seemed to be able to explain. As the pain also began encroaching on the weeks before and after my period, I brought up my symptoms to a parade of gynecologists, who shrugged it off as normal or told me to take ibuprofen (and I did—I took so much Motrin that I developed problems with my stomach lining).

There was a deep gulf between what my body knew and what I learned to believe from doctors. As they dismissed my concerns, I tried to dismiss them as well; this was pain everyone with a uterus experienced, and most people handled it just fine. I started to believe that the problem was not with my body—it was with my weak spirit. And maybe I was just being overdramatic.

Then, right before the Covid-19 pandemic, I finally found a wonderful doctor who changed my life. She listened and said what no one else had ever told me before: “I believe you.”

*

I was tentatively diagnosed with endometriosis, with a laparoscopic procedure and biopsy scheduled to confirm the diagnosis the following month.

Endometriosis is a condition that results in tissue growing where it shouldn’t—tissue that usually lines the uterus grows outside the uterus—and causes a host of issues, including difficulty conceiving. According to the World Health Organization, it affects about 10 percent of the uterus-having population. Although this is a significant portion of people, it’s still a disease that usually has a long wait time between its initial onset and the actual diagnosis—and frighteningly, BIPOC and trans and gender-diverse folks are diagnosed at a much lower rate than white and cis women, respectively.

No one lives a pain-free life, and that’s especially true of people with chronic illnesses like endometriosis.

After my diagnosis, not only was I in physical pain, but I was horrified at the mysterious battle my body was waging inside me. The isolation everyone was feeling during the pandemic was exacerbated by having an illness that few people seemed to know about or understand. During a particularly brutal week of endometriosis symptoms, I curled into the fetal position on my bed and started Sally Rooney’s first novel, Conversations with Friends, in hopes of distracting myself from the pain.

Rooney is best known for her second book, Normal People, which follows a couple as they fall in and out of hooking up (and love). But it was Conversations with Friends that drew me into obsessive fandom. It was the first time I met a character in fiction with endometriosis.

Frances, a bisexual twenty-one-year-old college student in Ireland, watches those around her with what seems like an icy detachment. Underneath her cool demeanor, she’s bubbling over with emotions as she maintains an intense, life-altering affair with Nick, an insecure married man. She’s also having alarming physical symptoms of “wrenching pain,” which she tries to keep hidden from the people who care about her. She dismisses it as “just period pain.”

Reading this alone in my bedroom, my heart jumped at her description. My body remembered all the years of “just” period pain, the bleeding that was so heavy I couldn’t even lift a leg out of the shower without recreating a crime scene, and the horrible feeling that something inside me was deeply wrong. I bet she has endo, I thought with a sick twist of excitement. As a lifelong reader, I had experienced the perfect satisfaction of finding myself in a book or poem so many times. But I had never come across a description of the flaring agony of endometriosis in any fictional text, and I was hungry for it; I needed to know that I wasn’t the only one experiencing this.

At one point early on in the story, Frances finds herself on her mother’s bathroom floor, unable to move, and becoming more and more frightened:

“It scared me so badly that the only comforting idea I could think of was: maybe it’s not happening . . . I let my hands tremble and waited to feel normal again, until I realized that it wasn’t just a feeling, something I could dismiss to myself. It was an outside reality that I couldn’t change. The pain was like nothing I had ever felt before.”

I was transported back to that night when it was just me, my bathroom floor, and that ruptured ovarian cyst. I had tried to pretend it wasn’t happening too. It was scary to think that there really was something wrong with me. When I was finally able to get up, I was startled by my reflection: My face had gone white, as if it had been completely drained of blood.

Due to the pandemic, by then, I had been waiting for my “elective” surgery for close to a year. Since elective surgeries can be scheduled in advance, they can also be rescheduled, whether it’s removing a wart or removing a large uterine fibroid.

I was scheduled for a hysterectomy to remove my uterus, fallopian tubes, and cervix. I would also have the endometriosis that my doctor had suspected had been growing inside of me over the past who-knows-how-many years excised, which would confirm my diagnosis.

After my diagnosis and before my surgery, I had a lot of time to kill—and a lot of questions about what was happening inside me. I began collecting all the information that was available about endometriosis. I found out quickly that, despite endometriosis affecting one in ten people born with a uterus, there is still no cure. People search high and low in medical textbooks, in Facebook groups, and on the internet to learn what they can about endometriosis after being brushed off by doctors like I had been.

I began surveying my friends and promptly diagnosed many of them with endometriosis too. I wanted everyone to know the information I knew right away; I wanted them to avoid any further pain.

Luckily, my friends didn’t mind my time as an overzealous diagnoser. They seemed, if anything, impressed by how much pain I had handled over the years and slightly afraid of endometriosis. While I hadn’t exactly gotten used to the pain (how could anyone?), it was so much a part of my everyday life that talking about it so much now felt excessive. My girlfriend, who has what can only be described as the chillest menstrual cycle in the world, patiently listened to the new facts about endometriosis that I discovered. The radiating pains in my legs? That could be endo! Getting up four times every night to deal with my period? That too! General exhaustion and fatigue? Endo!

But I wanted more. Reading about Frances’s experiences in Conversations with Friends had whetted my appetite for seeing my own experience reflected back to me in literature. All my life, I had looked for answers in books, and I was no different when it came to endometriosis.

I quickly found out that I was in good company.

*

Hilary Mantel is one of our most well-regarded modern authors. She’s won the Booker Prize twice, and she’s written several novels and short story collections. While she’s more known for her fiction, her memoir Giving Up the Ghost describes the struggles she went through before she was eventually diagnosed with endometriosis.

Like me, Mantel had been experiencing symptoms for decades. On her wedding day, she notices a feeling that “something seemed to flip over and claw at me, as if I were a woman in a folktale, pregnant with a demon.” This pain was familiar to me, as was her searing, radiating leg pains, a common but not-often-mentioned side effect of endometriosis. Instead of the baby girl she longed for, Mantel only has the feeling of something evil clawing the inside of her—a kind of bleak and twisted mirror image of pregnancy.

Mantel had actively been searching for answers about her debilitating physical pain for years. She’s first told her pain is idiopathic and “accounted for by no known disease.” She is prescribed antidepressants, which blur her vision so she cannot read; Valium, which has the opposite of its intended effect; and several antipsychotics, including one that gave her akathisia, a movement disorder that leaves those afflicted unable to stay still.

Instead of medical professionals listening to her physical symptoms, they assumed the problem was in her head. Soon a psychiatrist even diagnoses her as being overly ambitious. She researches on her own and is mocked by a doctor for knowing medical terminology and effectively diagnosing herself.

After years of pain, Mantel gets a hysterectomy at twenty-seven. Since there is not yet a cure for endometriosis, often the closest people come is having a skilled doctor excise the endometriosis tissue and/or perform a hysterectomy. Treatment usually involves reducing pain and little more.

I got my hysterectomy at thirty-seven. I woke up from the procedure groggy, with tubes and cords holding me down, and in an immense amount of pain. Even though I knew I would be alone when I woke up (it was December 2020; elective surgeries would be canceled again just two days after my own procedure), I wasn’t prepared for the fear and sadness coursing through me.

As I struggled to get the attention of the nurses, I wished deeply for my mom. She had been a nurse for decades, and she would’ve known just what to do—adjust the tubes so that I didn’t feel so trapped, hand me a cup of water, tell me that the worst was over and that I would be going home soon. As my body adjusted to the fact that I would never be a biological parent, I pined for my mother as I hadn’t in years.

During my recovery, I dealt with what felt like a new body. I was not prepared for how much pain I’d be in or how tired I’d be. I often thought back to Mantel’s reflections on her hysterectomy (which, coincidentally, she also had at the end of December): “I had been, until Christmas, a woman who thought she had a choice.” While I had known for many years that I wanted to lead a childfree life, it’s different to find out that my endometriosis would’ve made conceiving very difficult, if not impossible; it’s different to know I, too, had no choice. But all along, my body had been holding this secret.

I still considered myself lucky that I had never wanted children, but my heart broke as I read stories on my endometriosis Facebook group about the people who suffered with endometriosis and longed for a baby. My decision to have a hysterectomy wasn’t a difficult one, but for people who want children, that choice is much more fraught.

About nine months after my hysterectomy, I was feeling like myself again (minus the stabbing pain, the epic amounts of bloodshed, and the mind-numbing exhaustion). I picked up Audrey Schulman’s novel Theory of Bastards, which follows a scientist focused on ​​evolutionary biology and psychology (and, in particular, what draws mammals to their mates) who achieves professional success even while struggling with endometriosis.

Like Mantel, the fictional Dr. Francine “Frankie” Burke had traveled a long road before getting her uterus removed at the age of thirty-three. As a teen, a school nurse tells her, “Try to think about your period in a different way. Expect it won’t be so painful and you’ll find the pain will diminish.” As one cannot mind-over-matter tissue growing inside their body, this advice doesn’t do much for young Frankie, just as it didn’t help me when doctors suggested my pain level was normal and could be cured with an over-the-counter pain reliever.

Frankie wins a MacArthur grant for her eponymous “theory of bastards,” which delved into how primates subconsciously decide who they will mate with. While accepting the award, she wonders what sets her apart from the other scientists watching her from the audience, and “the only difference she could think of was the way her disease had taught her mind to focus.” She doesn’t excel in spite of endometriosis; she excels because of what it’s taught her. And because of what it’s taught her, she’s now won enough grant money to pay for a hysterectomy to relieve some of her pain.

Frankie woke up alone in the hospital just as I did after my hysterectomy and endometriosis excision. But that’s where our post-surgery journeys diverged. I was very lucky: I was wheeled out of the hospital and scooped up by my girlfriend to convalesce at her apartment. For the first time in my adult life, I was totally dependent on someone else. If I had thought waking up hazily after surgery to a nurse yanking a pair of huge hospital underwear (paired with a matching gigantic pad) up my legs was my humbling moment, I had not experienced what was one of the most horrifying and romantic moments of my life. Completely unmoored by my physical discomfort and weepy from painkillers, I was unable to remove the bandages covering my laparoscopic incisions at the scheduled time; I was afraid they would somehow pull out my stitches. Unshowered, bloodstained, and teary-eyed, I asked my girlfriend to peel the bandages off for me, which she did. The calmness and gentleness with which she helped me at one of my lowest moments further overwhelmed me, but now, I was crying tears of gratitude. And my stitches were fine.

It is grueling to read about Frankie’s post-surgery journey in Theory of Bastards. Shortly after the procedure, she travels to a bonobo habitat to study their lifestyle and sexual habits. When she arrives, she is still in a wheelchair as she waits for her body to heal from the surgery. Postoperative pain is still affecting her, and she must take frequent breaks to rest her body. She’s a stranger in a strange land, with no one to depend on but her fellow researcher. As she describes it, “In the face of pain, each of us becomes a mute animal, suffering and alone.”

Yet she dives right into tracking bonobos’ ovulation cycles. She quickly notes that the timing of the females’ ovulation is concealed—just like with humans, as her research partner points out. The fact that Frankie herself is now unable to have biological children while researching the fertility of another primate species is beyond ironic; it’s tragic. Readers sense a ghost hovering—or at least I did.

As my body adjusted to the fact that I would never be a biological parent, I pined for my mother as I hadn’t in years.

(I like to imagine that the fictional Frankie could’ve also read Mantel’s memoir. Surely her science- and reproductive-minded brain would’ve recalled the devastating line “When women apes have their wombs removed, and are returned by keepers to the community, their mates sense it, and desert them.”)

After she gets her hysterectomy, Frankie sees “her womb walking around a room, separate from her, people talking to it. Fleshy and panting, it stomped about on its clumsy ovary feet, barking orders out its cervix, its flesh surgically mangled, a creature from the black lagoon, scarred and imperfect.” After these organs have caused so much pain, it is impossible not to try to visualize them, even anthropomorphize them in a way. Like Frankie, they had more power over my life than most people.

*

Hilary Mantel is a literary icon with a keen eye for how people behave. Even so, in one of the most heartbreaking passages in Giving Up the Ghost, she worries, “I hadn’t been smart at all.” Like me, she lost faith in herself and listened to what the doctors told her instead. She went through hell every month, and she trusted the doctors when they told her that it was “part of the burden of womanhood.”

I was stunned to see that Mantel—an intellectual and literary giant—felt the same way I did. It’s a strange juxtaposition of thinking of yourself as somewhat intelligent but then looking back and feeling like you wasted so much of your life by not questioning more, by not being louder. I, too, felt like a “dumb little angel,” in Mantel’s words, who ultimately believed that doctors always knew best and saw myself as deserving of this pain. It’s amazing to think of how much power doctors have and how often everyone—no matter how intelligent they are—assumes they’re always right.

Luckily, it’s not just books that are starting to show what “endo warriors,” as we’re often known as, go through. In the last year alone, film and TV have pulled back the curtain to show what it’s really like to live with endometriosis. Shannon Cohn’s documentary Below the Belt didn’t pull any punches when it came to showing everything from mind-boggling pain to sky-high medical bills to the emotional costs of chronic illness. At the New York City premiere this spring, sitting in a theater full of people who had been through the wringer with endometriosis was a powerful experience; there was rarely a moment when I didn’t hear an audience member crying—there was rarely a moment when I wasn’t crying myself.

Hulu’s limited-series adaptation of Conversations with Friends also premiered this spring, and I was thrilled to see how many articles about endometriosis popped up on social media. Although the portrayal of the illness wasn’t quite as explicit and accurate as it was in the novel, it’s still one of the very few shows that went where even menstrual-product commercials have been afraid to go for many years: It showed period blood. Menstrual blood has a huge stigma attached to it, despite half the population losing what sometimes feels like gallons of it every month. Seeing more of it in literature, film, and even advertising can lessen the stigma and help people to see that it’s not something to be ashamed of.

Although there aren’t many books that feature endometriosis as a major part of the story, through these books, Rooney, Schulman, and Mantel made me feel validated and seen, especially during a period of time when I felt alone, scared, confused, and in pain. My identity has been informed by the art I’ve consumed on my journey to becoming the person I am. I lived far too long feeling clueless, frustrated, and isolated with period pain. Feeling alone and feeling like my own body had it in for me proved to be an unhappy combination. If I had read a book like Rooney’s, Schulman’s, or Mantel’s growing up, would I have been more insistent that doctors pay attention to my pain? Would I have prevented the damage being done to my reproductive system?

No one lives a pain-free life, and that’s especially true of people with chronic illnesses like endometriosis. But as more authors bring these stories to life, people with endometriosis may finally feel less alone. As more and more artists see endometriosis reflected in art, they’ll also feel empowered to share their experiences with this ailment. The more art we’re exposed to about chronic illness, the less isolated people will feel. Perhaps more importantly, they’ll feel more confident about seeking treatment early, arming themselves with information if they encounter hapless medical professionals, and speaking out about what their lives are like.

In the future, I dream of endometriosis and other reproductive health issues being discussed regularly and without shame. I dream of more stories about BIPOC people with endometriosis, like Cohn’s documentary. I dream of stories about more queer people with endometriosis, like Rooney’s novel. I dream of more stories about trans and gender-diverse people with endometriosis. And I dream of the day when ultimately there’s a cure for endometriosis.