Ask Me About My Uterus Read online

  Of course, we know that just because a woman has that access, it doesn’t mean her concerns or symptoms will be taken seriously. But before we can even address the mistreatment that occurs once a woman is interacting with the health-care system, we have to address the fact that some women never get that far. We won’t get a true picture of the incidence of endometriosis until we specifically look for it in marginalized communities. And before we can do that, we have to address the disparity in access. Social epidemiologist Jhumka Gupta has said that endometriosis is a social justice issue. In her speech at the Worldwide Endo March in Washington, DC, on March 19, 2016, she said that endometriosis is a social pathology, which she defined as “gender inequality, social injustice, and attitudes of society that keep women and girls from fully reaching their potential.”

  In other words, we really don’t know how many people have endometriosis, and why we don’t has far less to do with a lack of scientific research and advancement than with our antiquated belief systems and power structures. But it’s not even that we don’t understand endometriosis on a population level: we can’t even seem to get it right with just one patient.

  Endometriosis is so easily misdiagnosed because when symptoms do present, they can be vague, difficult to articulate, and embarrassing. It’s not yet socially acceptable to announce, “I get crampy, fiery-hot diarrhea on my period!” Nor is it easy to say, “Not only is penetrative sex impossible for me, I can’t even masturbate in peace because the subtle contractions of my uterus during an orgasm make my pelvis ache and not in a good way!”

  The struggle to explain what endometriosis actually feels like is very real. The pain itself is of its own breed, yet it feels just similar enough to other pains that when described as such, the possible diagnoses abound. It also exists on a spectrum of severity that means that sometimes the pain level is all-consuming, and other times it’s like trying to look at something in your periphery without turning your head. It’s there, you know it’s there, but it’s like trying to catch the air around a bird’s wings.

  It only took a few years for the pain to just become a part of me. Suddenly, what was notable wasn’t when it flared up—but when it didn’t. Even now, it’s been so many years since I’ve lived in a pain-free body that I don’t really remember what it feels like.

  This idea of how we experience our internal selves—physically, that is—has fascinated medicine for centuries. There’s a constant hustle and bustle inside of us at any given moment: our heart beating, stomach digesting, intestines wriggling about as they do. Sometimes we’re privy to this work with a twinge or a gurgle, but it’s not like we feel all our internal organs. Those nineteenth-century doctors, who knew little about the workings of the nervous system, didn’t find it reasonable that a woman could proclaim that she felt her uterus. And the harder she tried to explain it, the more unhinged they thought she was.

  Oftentimes, that awareness of the internal workings of one’s body comes about as a warning; something’s not quite right. There’s inflammation or injury. Usually, for the minor stuff, we can reason through it: the scratchy sore throat before a cold, the burning muscle pain after a workout, midafternoon tension headaches. These are sensations most of us are familiar with, and we can pay attention to them, articulate them to others, and conjure up those feelings in our own bodily memory when they’re articulated to us.

  With endo, it seems to me that those internal sensations are so poorly understood outside a woman’s body (i.e., medical science) that it’s extremely difficult to process it internally. The best we can do is relate it back to an experience we’ve had, or that we know is commonly understood: “It’s sort of like period cramps, but much worse…”

  Some women have straight-up compared it to contractions during childbirth, though they insist that endometriosis pain is worse—at least in part because it’s a constant, sometimes daily endurance. Childbirth, at its most profound, is a few days of intense physical discomfort. And with childbirth, at least there’s some kind of payoff: after hours upon hours of contractions, you get a baby. I can only imagine that women have long suffered childbirth with that payoff in mind.

  Endometriosis has no such incentive, and for me, it began to feel like unrelenting punishment. In a metaphorical, feminist sense, I felt like there was something terribly sad about the female reproductive system attacking itself in such a way. I’ve always happily identified with my femininity, whether or not I was strictly a “girly-girl” by society’s standards. As I struggled to understand endometriosis—and accept the limitations in that understanding—I felt strangely detached from that delight that womanhood had always brought me. In the early days, when the word “infertility” was thrown around a lot, I struggled with my lifelong devotion to childlessness. The thought of being unable to get pregnant bothered me—not because I’d wanted a child, though, but because I’d wanted a choice.

  Those types of esoteric questions quickly became too much for me to think about. They were emotionally wrought, and I was exhausted in a way I couldn’t seem to explain properly to anyone. It’s an oppressive feeling: it’s like gravity is boring down on you. This is still true for me. That kind of awareness of physical fatigue causes a parallel mental fatigue that is not limited to negative thoughts or worries—every thought seems to take a disproportionate amount of effort. Sometimes it feels like my thoughts are behind a wall of foggy glass that I have to shatter, but I don’t have the strength, so I just try to wipe away the fog and squint. Once in a while I manage to crack the glass, but somehow that only obscures it more.

  The pain can be like that, too. Something that I know is there, just beyond, yet that I cannot touch or soothe. Sometimes I think that if I could only look at it, I would be able to make it go away. Other times, I wonder what I would do if I found myself face-to-face with it. Would I recognize it? Would it see me?

  When I was a teenager and had probably only had something like twenty periods, I was often stopped cold in my tracks by cramps. For a minute or two, I’d be frozen in time, gripped by pain, and I was forced to stare it down for those long, agonizing moments. I used to try to imagine what my uterus looked like, what the organs around it were like. I would distract myself by trying to look inside my own body. I wondered if someday, when I died, I’d be able to be a ghost in the autopsy room. If I’d see my own uterus being lifted out of my body and recognize it from my literal navel-gazing.

  Back then, I didn’t have a word, let alone a concept, for that pain. I didn’t hear the word “endometriosis” until I was no longer a teenager. But teenagers certainly do have endometriosis, and thanks to the work of places like the Endometriosis Foundation, those young people will have a word for their pain a lot sooner than I did. In some schools, endometriosis pops up in sex ed classes now.

  Although it seems that most people with endometriosis begin having symptoms at or around the time of their first period (whether they know it or not), calling endometriosis a “period problem” doesn’t account for the phenomenon of endometrial lesions found in the pelvic cavities of fetuses. Fetuses who have, clearly, not menstruated. Endometriosis has been discovered during fetal autopsies, a finding that seriously challenges the widely held belief that endometriosis is strictly a menstruation-dependent disease.

  Up until 2014, none of the fetal case studies reported were from the United States. That’s not to say that it hadn’t happened here. It’s more likely that the reason it was being found elsewhere was that researchers were actively looking for it, unlike in the United States, where a more reactionary, passive approach has been taken. In the United States, this sort of approach isn’t limited to reproductive medicine, but is more a reflection of the health-care system’s modus operandi in general.

  A case report from the American Society of Reproductive Medicine in 2015 told the story of an eighteen-year-old woman, thirty-five weeks pregnant, in whom a fetal abdominal mass was detected by ultrasound. By thirty-seven weeks, the mass had enlarged. When the baby
was delivered, a surgical exploration of its pelvic and abdominal cavities revealed a large, cyst-like structure, which was removed and sent to pathology. What was it? A hemorrhagic endometrioma, with focal endometriosis. The fetus had endometriosis.

  It’s like Inception: the uterus inside the fetus (which is inside the uterus of the mother) has endometriosis. Just let that sink in for a minute.

  Do the mothers of these fetuses have endometriosis? For most contemporary doctors, the fact that the patient is pregnant would probably be enough to rule out endometriosis, even though we know that endometriosis does not necessarily equal infertility.

  The fact that fetuses can have endometriosis could give us remarkable insight into how the disease develops. Could it be that something happens in utero, when the uterus itself is forming, that allows that tissue to live in places it doesn’t belong, even though it only typically becomes a problem once a young woman approaches puberty and begins to secrete the estrogen that the tissue needs to thrive? Dr. Redwine, clearly a system’s thinker, if his constellatory map of the female pelvis is any indication, believes that endometriosis comes down to trouble with the genes responsible for executing the plan of our bodies as we develop in utero. Homeobox genes (also called Hox genes, because, I guess, Homeobox needed a nickname) are the genes that determine how we’re built—why we have legs where we have legs and ears where we have ears. Though these genes aren’t responsible for actually building limbs and organs, they do the directing—and if Hox genes possess mutations, development doesn’t go according to plan. Hox genes are full of Hox proteins that are DNA enhancers, meaning they attach themselves to certain genes and either activate or repress them. Hox genes are also remarkably consistent from species to species. I have the same Hox genes as my dog and the fly on my window. The difference lies in our respective body plans: my dog’s Hox genes sent her the same instructions for Hox proteins as mine did, but her body plan yielded a cute mutt and mine a circumspect brunette—with endometriosis. As Dr. Redwine explained in his lecture, he believes that Hox genes play an important role in the development of endometriosis, a process that precedes menstruation—that precedes birth, even. Abnormal differentiation of Hox genes within the developing reproductive tract gives rise to that endometrial-themed tissue manifesting in places it doesn’t belong, still programmed to do its work, just in the wrong location. Sometimes, the very, very wrong location.

  Dr. Redwine isn’t the only person who has come to believe that endometriosis begins embryonically, but he was certainly one of the first. His original work was published in the late 1980s, and it’s only been within the past decade or so that others have converged with the theory he’s presented. But because it so directly challenges Sampson’s theory of retrograde menstruation, which has been the primary explanation for nearly a century, whether it will sit well with clinicians (who are not always researchers) is another matter entirely. For doctors who have been using Sampson’s theory (which is straightforward, easy to explain, and fairly simple for patients to comprehend) as an explanation for patients, having to grasp a more complex theory, and in turn distill it down for patient consumption, may seem a particularly daunting task. I don’t know how long it typically takes for these high-level theories that exist in the realm of scientific research to trickle down into clinical practice and eventually the public consciousness—but a lack of research funding and scientific consensus certainly hasn’t served to expedite what I can only assume is, at best, a somewhat lethargic process. Regretfully, such long, drawn-out processes cost people their lives; medical science can’t advance quickly enough to save everyone. The casualties of the as-yet-unknowns, as with Gilda Radner, become rallying cries and warnings—even as their lives were filled with warnings that went unheeded. In It’s Always Something, Radner wrote that she wasn’t even that surprised when she found out she had ovarian cancer, because she’d always had problems with ovarian cysts. By the time medicine caught up to her, I’d wager that Radner was the one who was the least surprised by the diagnosis. What resonated with me about her story, and about Karen Armstrong’s story, was the deep knowing of her own body as a woman that is seemingly unworthy of anyone’s consideration or respect. I find that deeply unnerving: that I might be dying, and no one would believe me, but that feeling of inescapable truth wouldn’t leave me no matter how much other people denied it.

  AS I FINISHED RADNER’S BOOK, I found that of all the things I would have wanted to ask her, I would have wanted to see how she felt about that denial of truth. I would have wanted to confer with her on this. Whenever people pose that question about famous dinner guests, living or dead, you’d like to entertain, Gilda’s always topped my list. It’d be a Saturday night, of course. We’d sit in the middle of my living-room floor, because I tend to eschew comfort and social convention, and I feel like she did too. She’d bum a cigarette off me, then change her mind halfway through and hand it back, as we talked about dogs and tap dancing and bulimia.

  I always imagine that after hours of me not being brave enough to ask her about dying, she’d take my hand and yank me up from the floor. She’d say something like, “I know you want to ask me about dying, but I want to ask you about living.” She’d ask me if I’d ever laughed during sex (yes), or in church (yes), or in therapy (yes). She’d make me tell her about the time I laughed so hard I pissed my pants all over my middle-school boyfriend.

  Then she’d tell me dying was like laughing so hard you don’t make any sound.

  CHAPTER 3

  What we needed was someone who bled… mothers big enough, wide enough for us to hide in,… mothers who would breathe for us when we could not breathe anymore, who would fight for us, who would kill for us, die for us.

  —Janet Fitch, White Oleander

  SYBIL—THE WOMAN WITH SIXTEEN personalities who was immortalized by Sally Field in the eponymous 1976 miniseries—was perhaps the most famous hysteric of the twentieth century. Sybil Dorsett lived decades after Anna O., and her story brought such horror into the public consciousness that not even Freud could have imagined it.

  Sybil was not her real name. It was a name given to her by the psychiatrist, Dr. Connie Wilbur, who treated her from 1954 at least up until the book Sybil was published in 1973, for which the doctor enlisted the help of a writer named Flora Rheta Schreiber. Joanne Woodward portrayed Dr. Wilbur in the miniseries opposite Sally Field as Sybil, and probably many people imagine the two actresses when they hear the names. But the real Dr. Wilbur was a lot tougher than how Woodward played her. By the time Dr. Wilbur first met Shirley Ardell Mason—the girl who would become known as Sybil Isabel Dorsett—she had been fighting for years to be taken seriously as a psychologist by her male colleagues. During World War II, women had a unique opportunity to enter the workforce because so many men had been drafted. When the men returned from the war, women who had enjoyed higher education and subsequently had careers were displaced. Connie Wilbur was no different. Despite the fact that she was purportedly quite a brilliant psychologist, who could have easily excelled on the higher rungs of psychoanalysis, once the male physicians returned from the war she was pushed aside.

  So the timing of her first meeting with Shirley Mason couldn’t have been better. Wilbur needed something so intense, so mind-blowing, that the psychoanalytic community would not be able to ignore her. Mason was incredibly feeble and desperate for care. The relationship between the two women (it was a relationship—and not solely a therapeutic one) catapulted them both into the public eye.

  We know much about the emotional journey Shirley Mason took with Dr. Wilbur to become Sybil, the years spent recounting the harrowing abuse of her childhood, but much less has been written about her physical ailments, most of which appear to have been written off as a consequence of her hysteria rather than the reverse. An emerging thread seems to be that if a woman is both sick and anxious, she’s sick because she’s anxious—not anxious about being sick. Although much of the work Sybil did psychoanalytically with Wilbur
has come under fire in the years following both of their deaths, what one cannot deny is the fairly well-documented medical evidence of Sybil’s illness. Early notes on Shirley Mason describe her constellation of physical symptoms—joint aches, fatigue, and debilitating menstrual cramps, from which she had suffered all of her life. In her book Sybil Exposed, journalist Debbie Nathan uncovered that at one point during the early years of her treatment, Mason underwent surgery for an ovarian cyst. This same surgery revealed not just a deformed ovary, but endometriosis.

  The ovary and endometrial lesions were removed, and reportedly this resolved Mason’s menstrual symptoms. For the next few decades of her life, her “nervousness” was treated with heavy barbiturates by her doctors, including Wilbur. Wilbur was particularly fond of sodium pentathol, colloquially referred to as “truth serum,” which not only stood to make Sybil more forthcoming, or even suggestible, but presumably could have masked her symptoms with its highly anesthetizing qualities.

  Another drug commonly given to women for menstrual symptoms was Daprisal, which Wilbur also readily prescribed. Daprisal was a combination barbiturate painkiller and amphetamine. It disappeared from the market once it was discovered to be highly addictive and easy to overdose on. Trying to find information on it today is next to impossible. One can infer, however, that if Mason was on such an intense cocktail of drugs throughout her reproductive years, her menstrual pain could have conceivably been dulled, or her suffering with them easily forgotten, particularly in the larger context of her struggles. But it is interesting that, yet again, we find a link between a diagnosis of hysteria and the actual physical presence of a painfully diseased reproductive system. It’s not a wandering uterus, perhaps—but it isn’t one entirely absent of pathology—what you’d called normal—either.