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I Suffered With Endometriosis For Decades. Why I Had To Beg Doctors For A Hysterectomy

To have to ask for permission to do something to your own adult body, and risk being denied, attacks the very heart of inalienable constitutional rights. Yet so many of the world’s societies whole-heartedly endorse this prejudice when it comes to people with uteruses.
By Tracey Lindeman
Author Tracey Lindeman leans against a railing in a city, looking at the camera. Lindeman suffered with endometriosis for decades before having a hystectomy.(Photo: Benjamin Cruz)

The day before my appointment with the surgeon, I asked my boyfriend to write a letter attesting to our plans to never, ever procreate.

Stunned, he squinted at me in a mix of confusion and incredulity. He knew me as a strong-willed woman, a take-no-shit kind of person. Why would I need his permission to do something to my own body?

But he’d never seen me in a doctor’s office. Within those confines, I instantly transformed into an anxious mess. He didn’t know about my little black pocket notebook, the one I’d recently purchased so I could jot down all my medical talking points and requests. He’d never seen me dissociate by reading from it during doctors’ appointments, or by taking copious notes in the sloppy cursive I’d honed over a few million lines of interview notes. He couldn’t fathom just how awful my medical care had been, nor how it conspired with visceral memories of childhood abandonment and violence to produce a form of complex post-traumatic stress that, in moments of vulnerability, often left me feeling powerless. He thought my preparedness was an exaggeration, but to me it was critical in case my mind went limp again under the mental strain of playing that tired game with doctors. You know the one, right? It’s what happens when you want something they don’t want to give you, so you find yourself negotiating, appealing, appeasing—trying to insist and argue while still deferring, so that you’re not sent home with nothing. By then, I’d been asking for a hysterectomy for 10 years, my fixation becoming more intense with each denial.

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He opened a blank document and began typing: I have watched Tracey suffer for many years—

“I don’t need you to tell him how you’ve watched me suffer. I can do that,” I snapped, bristling with nervous energy as I stood behind him, watching him hunt and peck at his slim white keyboard.

“I don’t know anything about this doctor,” I huffed. “But I know how the system works, and I don’t want to hear, ‘Your husband might want kids.’”

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He frowned at my impatience and looming presence. He was a prosaic writer and his long thin fingers typed so slowly. He fretted over his sentence transitions. Should this be a hence or a however? At my core I understood: he wanted to help me by getting this right. Still, each blink of the stalled cursor twisted my anxiety into more knots. My shoulders curled inward and the muscles surrounding my ribcage tightened, forcing my lungs to heave as I inhaled hard through my nose. My tongue spread itself firmly against the roof of my mouth. My jaw clenched. A high-pitched whine circled my brain, stuffing my ears with the sound of a million cicadas on a late summer’s day. My gaze became unfocused and unblinking—that blank, hardened stare that could bore holes through the backs of people’s skulls; the stare that washes over my face whenever I suddenly find myself in a situation I can no longer tolerate.

Ah yes, my old friend fight or flight. The feeling of having no options. It presses the gas pedal on my sympathetic nervous system, causing my brain to spin out like it’s doing joyless donuts in a parking lot. But I’m spinning too fast, and I can’t catch my thoughts. That’s when the limpness takes over, muffling my circling thoughts with a thousand-pound duvet until all I can hear is the droning static of my synapses in overdrive. It’s the sound of being unable to cope with even just one more speck of bullshit.

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Although we’d been together for six years by then, my boyfriend could not possibly comprehend how important this letter was. It felt like my key to finally winning the game I’d been playing for more than half my life. Presented with this evidence, the surgeon could not possibly prioritize my supposed fertility over my pain. See? It’s not only my choice but also my male overseer’s choice, therefore you have to do it.

“I have been so thoroughly traumatized by my medical experiences that even the thought of attending a doctor’s appointment fills me with dread.”

When I look back at that October day now, I realize this wasn’t only a doctor’s visit. This was a life-or-death moment, bookended on one side by metastasized desperation and on the other by an almost constant desire to be teleported off this planet. Over the past 24 years, I’d seen countless doctors about my extreme cramps and bleeding, and I’d only just received a diagnosis a couple weeks earlier. I was on the same pain medication I’d been prescribed as a 14-year-old, an anti-inflammatory that can cause stomach ulcers with overuse. So many medical professionals had told me that losing weight would solve my pain. When I lost weight but still felt pain, they told me to lose some more. Would I only have relief once I disappeared?

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I have been so thoroughly traumatized by my medical experiences that even the thought of attending a doctor’s appointment fills me with dread. So often the tears begin rolling down my cheeks before the doctor has even had a chance to sit down. At some point, seeing a doctor became like some kind of reverse exposure therapy, each visit making me more traumatized. For two decades, I oscillated between frustrated stoicism and pleading for help. I would go months and even years without bothering to see a doctor about my pain or the side effects of the medications they put me on. Every now and then, though, I’d pick the thread up again when I decided I’d had enough. People with chronic pain understand this intermittence as a way to juggle the demands of everyday life with the bigger picture, all while living in perpetual misery. But I could never shake the feeling that to doctors it looked suspicious—that my pain could not be as intense as I said it was because if it was, I’d be in their office every other week and in the ER every other month. Every doctor’s visit left me feeling like I’d either complained too much or not enough, but never the right amount to get actual help. I’d been gaslit for so long that every new doctor felt like a new adversary, someone I had to fight. If this was the game, I didn’t understand the rules of engagement.

As a teen, I was a ward of the walk-in state. No assigned doctor, no comprehensive file, just a fixture in a clinic waiting room, watching muted TVs while waiting to shuffle across the cheap industrial carpet into one of the exam rooms. It was there where I was first prescribed the birth control pill and naproxen, at age fourteen. That’s pretty much all they could do for me, said the doctor on duty. If only I had a family doctor, I often thought; they would help me see the right people and get the right tests to figure out why I had such incredible pain.

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Ten years later, I finally did get a family doctor. By then I’d tried several different brands of birth control pills to manage my period pain and bleeding, but each one was worse than the last. If they didn’t cause spotting, they gave me acne, intense mood swings, and awful PMS, or made me feel straight-up depressed. The family doctor suspected it was endometriosis but said the treatment was the same whether or not I had an official diagnosis: birth control and painkillers. Why tax an overburdened healthcare system looking for something we already know how to treat, she rationalized.

Exasperated and desperate, I tried to force her hand: at 26, I stopped taking birth control because of the side effects. How about a hysterectomy instead? I implored. I had never wanted kids, I told the doctor, so why suffer? No, she replied—the menopause alone would grind my teeth into dust, break all my bones, destroy my life. But getting pregnant could help with the pain and bleeding, she continued, a lilt in her voice. Perhaps I shouldn’t dismiss it out of hand.

“I wanted what they found inside me to be awful, worse than anyone ever suspected, to finally prove once and for all that something was actually wrong with me.”

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By 33, I wasn’t any better off. In fact, I was worse. It had been seven years since I’d abandoned the pill, time that allowed my mental state to level out to some extent. The downside was that I was bearing the full brunt of my periods—wicked stretches of six, seven, eight days where I hated being alive. It was then when, a half-dozen internal pelvic ultrasounds and bucketfuls of naproxen later, I followed my partner to a new city. The move gave me both the opportunity and the daunting, exhausting task of sifting through a new-to-me pool of doctors.

I’d become fixated on getting a hysterectomy. I wanted my uterus, ovaries and fallopian tubes to be extracted for my motionless, anesthetized body. And I wanted what they found inside me to be awful, worse than anyone ever suspected, to finally prove once and for all that something was actually wrong with me. I wasn’t a hysterical hypochondriac looking for drugs or attention. I was sick, and these people should be ashamed for making me keep a uterus I didn’t even want, and which probably didn’t even work anyway. I fantasized about shoving my results in the faces of all the doctors who had ever denied me. See? See?

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It was with all this wreckage that I stood behind my boyfriend, wishing he could understand the medical trauma, wishing he could read my mind, wishing he could instantly empathize and give me all the softness I craved.

But how could he? In modern times, straight cis men rarely face such rote institutional denial of their right to choose, especially when it comes to reproduction. Instead, they benefit from a culture where vasectomies are seen as a defense against gold diggers and unwanted children—a noble choice made for the benefit of society, really. In the U.S., the idea of male sterilization is so commodified that some men schedule their vasectomies to coincide with college basketball’s March Madness—an opportunity to use medical leave from work to enjoy televised sports. Some urologists call it Vas Madness, offering free pizza coupons and ice bags printed with team logos to patients who book their vasectomies during the basketball tournament.

It’s true that not all male sterilization has been voluntary. Although historically women have been the primary targets of government sterilization programs, sterilization was also used against some disabled men and men of colour, particularly Black and Indigenous men.

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Today, some trans men and women are required to be sterilized in order to have the gender on their ID changed. And most vasectomies are reversible in ways that female sterilization is not, which perhaps makes it an easier procedure to commodify. Still, the reality is that sterilized men are an unremarkable piece of the social landscape, as easy to ignore as a suburban stop sign. Women without children, however, are often treated like a car on fire on the side of the road, and everyone’s welcome to come by to point and gawk. Your aunts at the family barbecue tease you, telling you you’re getting a bit old. Your boss gives coworkers with less seniority but more offspring first dibs on summer vacation and flexible working arrangements. And so, so many people talk about “the clock”: family, friends, doctors, co-workers, the guy at the corner store—they’re all keeping tabs on your supposed hormonal timepiece. Can’t you hear it tick-tick- ticking away your chance to give birth to the miracle of life?

Pronatalism underpins modern society. It built the pedestal upon which the uterus rests—a sacred, supreme vessel no one is allowed to touch except for breeding purposes. However, we need to acknowledge the inequalities in healthcare (and in society) that are created when we prioritize children and the idea of having them, because these conversations have direct and life-changing implications for the treatment of women. This acknowledgment is long overdue: the number of women choosing to be child-free is climbing, but we still live in a world with norms and systems built on the premise that most women will at some point become mothers. By making child-bearing the focal point of female healthcare, we become immune to caring about women’s actual lives.

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We can see this at work in a lot of different ways. One such way is how doctors can refuse to help patients get tubal ligations or hysterectomies by citing personal, religious or moral reasons. Like with abortion, their metaphorical “conscientious objector” card trumps a patient’s needs. According to American College of Obstetricians and Gynecologists (ACOG) guidelines, these doctors should either prescribe another kind of birth control or refer patients elsewhere. But these guidelines aren’t actual rules (provincial/state authorities set those), and they don’t specify if a doctor should make an effective referral to a non-objecting practitioner. In these gray zones, doctors consulting these guidelines may consider prescribing another form of birth control as good enough as far as their duty to their patient goes.

That’s how objections usually go: no grand statement of conscience but rather cowardly stalling, demurring, running patients through the wringer a few more times. Allowing for conscientious objection on matters of female reproductive freedom—as most jurisdictions and medical associations do—cements the message that the medical system doesn’t have to be accountable for its entrenched sexism.

The mental gymnastics used to justify denial of care are incredibly perplexing, especially when you consider one fundamental thing: doctors aren’t forced to work with people of reproductive age. If a doctor goes into medicine knowing they have a problem with abortion or voluntary sterilization, why not choose a field outside of that realm from the start? They can easily choose to work in literally any other specialty, from geriatrics to oncology to orthopedics. There is no shortage of alternative careers for general practitioners and gynecologists with moral qualms about giving patients reproductive control over their own bodies. Yet here they are. They get the privilege of entering a field knowing they will deny certain types of care to certain types of people, and they get to do this because they know the system will always defend their interests. This is little more than an ego trip, a patriarchal power move aided and abetted by medical colleges and medical institutions that care more about doctors than the patients they serve. Worse, institutions along with medical colleges and boards enable this behavior by making the process of filing complaints against doctors difficult and intimidating, meaning that a lot of bad medicine goes undocumented.

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“Reproductive freedom isn’t only about abortion and deciding whether to have a child, but also about deciding to never have children.“

These dynamics are paternalism and patriarchy at work. In gynecology in particular—a medical field defined by male power over women—there’s nothing that forces doctors to respect the reproductive wishes of their patients. And sure, I guess we don’t want to live in a world where anyone is forced to do anything they find objectionable. But at the same time, their use and abuse of this privilege forces patients to seek help elsewhere, often at personal financial cost. For instance, if a patient seeking an abortion doesn’t have the resources or the ability to see another doctor—which is a huge problem for low-income people and those living in rural or remote communities—they might be inclined to take drastic measures, ranging from throwing themselves down the stairs to resorting to back-alley butchers.

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To have to ask for permission to do something to your own adult body, and risk being denied, attacks the very heart of inalienable constitutional rights—yet so many of the world’s societies whole-heartedly endorse this prejudice when it comes to people with uteruses. When it comes to voluntary sterilization, even some feminist and pro-choice circles treat the matter as separate from abortion, as if that issue is either less important or still too taboo to touch.

Book cover of Tracey Lindeman's Bleed(Photo: ECW Press)

My point is, reproductive freedom isn’t only about abortion and deciding whether to have a child, but also about deciding to never have children and allowing that to be a legitimate, uncontroversial option for people. Unfortunately, we’re still a long way off from that ever happening. Instead, we are routinely denied choice and agency under the guise of the biological clock—the idea that every woman, when faced with increasing age and declining fertility, will one day wake up with babies on the brain. As such, a not-insignificant number of medical professionals feel they have a responsibility to dissuade young female patients from making choices that will impact their future fertility, even when those patients enthusiastically insist they will never, ever want children. This gets even more complicated for people with diseases such as endometriosis. Our misery is wrapped up in the reproductive system, yet we are routinely barred from touching it. Instead, we are prescribed medications with whole-body side effects that are seen to preserve whatever fertility we might have, whether we want that fertility or not. This is treated as a sacrifice we should be willing to make to ensure we don’t make choices we might regret. These ideas are outcroppings of the view that a woman defining the parameters of her own existence is unsafe for society.

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Men? Oh, well, they’re just making personal choices. These bitches are burning down the empire.

Excerpted and adapted from BLEED: Destroying Myths and Misogyny in Endometriosis Care by Tracey Lindeman © 2023 by Tracey Lindeman. All rights reserved. Published by ECW Press Ltd. www.ecwpress.com

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