Ask Me About My Uterus Read online

  Copyright

  Copyright © 2018 by Abby Norman

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  First Edition: March 2018

  Published by Nation Books, an imprint of Perseus Books, LLC, a subsidiary of Hachette Book Group, Inc.

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  The Library of Congress has cataloged the hardcover edition as follows:

  Names: Norman, Abby, author.

  Title: Ask me about my uterus : a quest to make doctors believe in women’s pain / Abby Norman.

  Description: First edition. | New York : Nation Books, 2018. | Includes bibliographical references and index. |

  Identifiers: LCCN 2017043712 (print) | LCCN 2017047259 (ebook) | ISBN 9781568585826 (ebook) | ISBN 9781568585819 (hardcover)

  Subjects: LCSH: Norman, Abby—Health. | Endometriosis—Patients—Biography. | Endometriosis—Diagnosis. | Women—Health and hygiene. | BISAC: HEALTH & FITNESS / Women’s Health. | BIOGRAPHY & AUTOBIOGRAPHY / Personal Memoirs.

  | HEALTH & FITNESS / Pain Management.

  Classification: LCC RG483.E53 (ebook) | LCC RG483.E53 N67 2018 (print) | DDC 618.1—dc23

  LC record available at https://lccn.loc.gov/2017043712

  ISBNs: 978-1-56858-581-9 (hardcover); 978-1-56858-582-6 (e-book)

  E3-20180202-JV-PC

  CONTENTS

  Cover

  Title Page

  Copyright

  Dedication

  Epigraph

  Author’s Note

  Prologue

  Chapter 1

  Chapter 2

  Chapter 3

  Chapter 4

  Chapter 5

  Chapter 6

  Chapter 7

  Chapter 8

  Chapter 9

  Epilogue

  Acknowledgments

  About the Author

  Notes

  To Hillary (the best thing that ever happened to me) and Jax (the best thing that ever happened to her).

  Each patient carries his own doctor inside him.

  —Norman Cousins, Anatomy of an Illness

  AUTHOR’S NOTE

  IT IS MY SINCEREST HOPE that some of what is in this book will no longer be applicable by the time it’s in your hands. Though a work becoming outdated may be embarrassing to some authors, as someone who is ill, I would be overjoyed if, in the time it took for this book to be published, science and society will have found answers to some of the questions I grapple with in these pages.

  This book could never be fully comprehensive, and the research I’ve chosen to include represents only a fraction of what I encountered as a young patient parsing through it. Despite my determination, much to my dismay, I could never know all that there was to know, and as a reader I hope you will view all that I have written with a keen and critical eye. It was very important to me that I produce a portable book, so my ambition was not to provide a comprehensive history or review of the literature pertaining to women, illness, and pain. Rather, it was to provide some starting points from which you might seek to ask further questions and discover better answers.

  Although this book includes research and interviews, I have framed the conversation around my own experience—not because I believe I can speak for anyone else, but because it seemed important to use the platform I have been given to call out the injustices I have observed (and in some cases experienced firsthand).

  When debating the title for this book, I worried that it would be viewed as exclusionary to those who identify with the struggles portrayed but who do not have a uterus. I am firm in my conviction that endometriosis is not a uterine-dependent disease—as firm as I am in my conviction that not all women have a uterus and not all those who have a uterus identify as a woman. I do identify as a woman, and in telling this story I had to acknowledge what that identity meant in my journey. In the grander scheme of things, however, it should be noted that by no means is my having a uterus (for the time being, anyway) a requirement for my female identity, any more than it would be for anyone else.

  I do not wish to become a poster girl, or “the voice of” anything depicted in this book: my experience is just one of many, and it is also one that benefited from the privilege of being a white woman. Where I have acknowledged how race and gender identity factor into my experiences in the broader sense, I have done so with the knowledge that there are others who could tell their own stories. We need to actively seek them out and listen to them.

  Of course, there could never be one voice, or one story, that is wholly representative of the issues that are discussed in this book. But the voices of those who need to tell their stories have long been silenced. I offer up my own account to join what I hope will become many voices demonstrating the complexity of these issues, of ourselves, and of the fierce will of the human spirit.

  In the same way that this book could never address all the research, it could not address every single event or person or conversation. I have, for the purpose of narrative and consideration for people involved in my story, obscured people’s identities, changed their names, and occasionally altered times and places (including those of all my doctors). The dialogue included in this book most often came directly from journal entries written promptly after the events described, though a few of the more recent ones are re-created from my memory. Interviews were recorded, transcribed, and condensed for inclusion, or, in some cases, conducted via online exchanges.

  Finally, it should be noted that any and all references to The X-Files or any other popular cultural phenomenon are not nearly as gratuitous as they may at first appear.

  Abby Norman

  June 2017

  PROLOGUE

  Illness is the night side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick.

  —Susan Sontag, Illness as Metaphor

  IT ALL STARTED WHEN I took what I now consider to be the worst shower of my life.

  I was a sophomore at Sarah Lawrence College, living with my roommate Rebecca in a small house on campus; it was entirely unremarkable, except for the giant katydid that had spent weeks living above our bedroom door.

  Rebecca had groaned in her sleep when my alarm went off, burying her head under her pillow. This was always our first exchange in the morning, even if she wasn’t conscious for it. We’d met the first week of freshman year and our sense of humor and taste for hummus and good coffee had made us fast friends. I was a bit frantic by nature, always early, generally a bit wary of life. Rebecca was more laid back, except where social justice was concerned—in that domain, she was all action and advocacy, which inspired me from the outset. In general, she engaged in age-appropriate life experiences with gusto, while I was more hesitant. She was also the antithesis of a “morning person.�
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  I had rolled out of bed on that otherwise unremarkable morning having had no premonitions of terror in my sleep. I grabbed my towel and shower caddy, opened the door, and glanced at that freakish katydid as I padded down the hall to the bathroom. I remember looking out the small window that faced campus as I undressed, the hour early enough that the world was quiet and still. The leaves had begun to change, but fall in New York could not rival the fire trees of where I had grown up in Maine. I’m from what you might call sturdy New England stock, and I had all but shed the lingering jowliness of a Maine accent. I wasn’t ashamed of where I’d come from—quite the contrary. I carried myself with what I’m sure was a rather pronounced affectation of New England pragmatism that bordered on elitism, despite the fact that I’d grown up in a seaport—about as unpretentious as you can get.

  Although I had no intention of living in Maine ever again—having arrived in New York full-stop at eighteen, as many people do—I did sometimes miss its breathtaking natural beauty. New York City was stunning, too, but in a very different way. I’d never been in the shadows of such tall buildings before, and the pulse of the city thrummed in me long after I’d boarded the Metro-North back to Bronxville. But I’d grown up a stone’s throw from the ocean, in a town whose maritime history was inextricably linked with my own. We were all the descendants of sea captains, and the seashore was often the only place I’d felt safe and protected as a child. I would lie down in the wet sand, cross my arms over my chest, and wait for the waves to come in and break against me. As they receded, they would pull me into a tepid embrace that was warmer than anything I’d received from the human beings in my life.

  Miles and years and states away, I stuck my hand in the shower, letting the warm water wake up my fingers. Down the hall, bongo drums began to thump, filling me with a sense of prescient nostalgia. As I stepped into the tub and pulled the curtain closed, I wondered, half asleep, if I was in the process of solidifying a memory.

  That’s when it happened, and it was as sudden as a thunderclap. A stabbing pain in my middle, as though I were on the receiving end of an unseen assailant’s invisible knife.

  I was immediately jolted awake, eyes wide and stinging. I pressed a hand against my side, trying to determine exactly where it hurt. It felt like it was everywhere and nowhere all at once. It was almost as though something had snapped deep inside me. I had never experienced anything like it. I stood very still and closed my eyes, trying to drown out the bongo drums long enough to listen to my body.

  The pain became more of an ache, which spread through my lower belly and pelvis, then snaked around my flank toward my back. I began to grow nauseated and dizzy. I fumbled to turn off the shower, tripping as I tried to step over the lip of the tub. My legs were shaking so much I could barely walk. From the floor I held my breath, waiting for the room to right itself so I could stand. I retched as I crawled across the floor, finally managing to pull myself up to the sink.

  I wiped the fogged-up mirror and cringed at my reflection: bloodless skin and dark, wide eyes. I recoiled at the haunting image of my mother staring back at me.

  To say I hadn’t thought of my mother in years would be a lie, but I had not seen her so vividly for quite some time. The last place I’d wanted to see her was in the mirror, the reflection of my own face.

  CHAPTER 1

  The merest schoolgirl, when she falls in love, has Shakespeare or Keats to speak her mind for her; but let a sufferer try to describe a pain in his head to a doctor and language runs dry.

  —Virginia Woolf, “On Being Ill”

  IN THE 1940S, A GROUP of researchers at Cornell University were trying to come up with an objective method to use in measuring pain. They suggested that a person’s pain threshold be measured in a unit they called the dol, which was short for dolor—Latin for “pain.” Once they had a name, they had to figure out what a dol actually was. The only way to do this was to design experiments that intentionally inflicted various types of pain onto human subjects, then scale them accordingly. So that’s exactly what they did: they came up with over a hundred different experiments using various pain-inflicting stimuli. As they reached the upper limits of pain, however, they were confronted with a very obvious problem. To understand pain at that level, they’d have to truly injure a subject, and the margin of error for something like that would have no doubt been very small. What they needed was a highly painful experience that wasn’t going to maim or kill anybody, and that they could easily observe. And that’s how researchers from Cornell found themselves in the obstetric wing of New York Hospital burning the hands of laboring women.

  The results of the study were published in 1949. It might seem like the study’s authors would have had a lot of convincing to do when it came to recruiting women to take part, but, as they noted in their introduction, it actually wasn’t that hard. The majority of the women volunteered because they were curious about the work. Many of them were either married to doctors or had been nurses, and they understood the challenge that pain presented to the field of medicine. They were, however, a little dubious about the proposed method. “Most of the patients commented upon the fact that the sensation from the uterus would be different in quality, duration and locale, and, therefore, expressed some doubt as to the possibility of equating the two sensations in terms of intensity,” the authors wrote, though they noted that those concerns were not “borne out by experience,” and that the majority of the women cooperated in describing their pain without issue.

  The experiment went like this: as the thirteen women in the study labored, in between contractions the researchers would burn one of their hands with a thermal device the researchers had calibrated to deliver varying levels of intensity. The researchers had set the value of a dol as “approximately one-tenth the intensity of the maximal pain,” which they were hoping the experiment would help them establish. What they really needed was for the women to be able to compare not just the intensity of the two types of pain, but their qualities. Of course, as the labor progressed, the women were understandably less communicative than at the outset, and so the researchers made inferences about their pain experience by noting their behaviors, “such as—crying, complaining, sweating and degree of alertness and cooperation.” Not surprisingly (to women, anyway), the pain experienced by at least one of the women achieved the maximum value for the dol pain-measurement scale—a 10.5, what the researchers called “the most intense pain which can be experienced.”

  These experiments in dolorimetry provided a lot of fascinating data about pain, and it scientifically confirmed what women had known for millennia: that childbirth can push beyond the perceived limits of the human pain threshold. It did not, however, provide medicine with the kind of objective measurement it needed in terms of pain assessment. As compelling as the dol studies were, they still relied on the patient’s willingness and ability to report their pain, which was inherently subjective.

  Of the research that was done to try to establish a truly objective measure of pain throughout the twenty-first century, what most people are probably familiar with is the 0–10 pain scale. The concept seems straightforward enough: you ask patients where their pain is on a scale of 0–10. Zero is no pain, and 10 is the worst pain they can imagine. Presumably, when patients report something somewhere in the middle, they’re comparing their current pain to previous painful experiences. Women who have given birth might compare a present pain to that of childbirth: “Not as bad as late-stage labor.” Or, if a patient has previously broken a bone, he or she might say, “Well, it’s worse than the time I broke my leg.”

  Since we all have varying degrees of tolerance for pain, and have equally varied experiences with different types of pain, it makes the scale feel kind of meaningless—especially when you consider that the person trying to ascertain how much pain the patient is in has his or her own experiences with pain that are thrown into the mix, too. A doctor trying to figure out how much pain a patient is in, when she says it’s “w
orse than a broken leg,” but “not as bad as childbirth,” is still only going to be able to guess what that means based on his or her own experience—and perceptions—of pain.

  This is true for any human being who witnesses another human being’s pain. When I was in the fourth grade, my best friend, Hillary, went to lift the grate off the top of a fire pit in her backyard, not realizing it retained the heat of the smoldering coals beneath, and suffered severe burns to both of her hands, which required, to my ten-year-old eyes, an impressive amount of bandaging. I remember helping her write her classwork, turning the pages of her books in school, and watching as she winced whenever any pressure, even the lightest playground breeze, touched the raw, pink skin.

  I knew she was in pain, but I couldn’t know exactly how she felt. I had experienced a few childhood injuries that were pretty bad—the screaming, crying, bleeding kind—and I imagined it probably felt like that. But I couldn’t know for sure what it felt like to be in her body, and I found that deeply disconcerting. She was my best friend, and I wanted to take her pain away. But how could I, when I didn’t understand it?

  BY LOOKING BACK THROUGH EMAILS, social media posts, and medical records, I can piece together what happened after I stepped out of my ill-fated shower that autumn day. I don’t remember exactly how I got from the bathroom back to the bedroom I shared with Rebecca. I don’t remember if the bongo drums were still beating beneath the loud swell of my heartbeat in my ears. I don’t remember whether the katydid flinched when I pushed my way back into the room, collapsing onto the bed. Nor do I remember how long I stayed there, curled up in the fetal position, before Rebecca woke up, shocked to find me there and not in class.

  I do know that I didn’t miss an entire day, because that afternoon I took a picture of myself in class to send to Hillary back home. We’d been best friends since preschool, twenty-some years of sisterhood that was wildly envied by most of the people who knew us. Since we were now living several states apart, we often sent daily photos, texts, or videos to one another, and at the very least were always connected through whatever metaphysical sisterly magic had bonded us as little girls.