Ask Me About My Uterus Read online

  He went on to explain that he didn’t know what the problem was, but that he thought I could have an ovarian cyst, something that was very much a college-age-girl-thing. As it stood, maybe he’d seen it on the scan, or maybe he hadn’t. He was just an ER doctor, not a gynecologist, so he wanted me to follow up with one of the latter. Beyond that, he just shrugged.

  Bright and wound tight, Sarah Lawrence girls were. That was the enduring reason, the medical consensus, for my strife. I’d chosen the school for its focus on writing, sure—but not so that I could become my generation’s answer to Sylvia Plath, fatal neuroses included.

  I don’t remember getting back to my dorm from the hospital that second time. I don’t remember anything at all until the middle of the following week, when I had to go to the dean’s office to discuss “my future.” I hadn’t been to class for several days, though I kept insisting that I would “surely feel better tomorrow,” and “wouldn’t have to drop the class, no, of course not.”

  As I sat shaking in the office, all I heard was “medical leave of absence” and “go home.” I swallowed, my mouth and throat so dry that I was afraid that if I spoke, my tongue would shatter like glass.

  “This is my home,” I offered, and it sounded pathetic, but it was the truth. I didn’t have a home to go back to. I hadn’t had one at all until I came to Sarah Lawrence. While the dean was understanding about my situation, her hands were tied. I was there on a full scholarship that was contingent on academic performance. I had to take a leave of absence to heal. Clearly I needed to go somewhere to rest and recuperate, to try to get to the bottom of what was making me sick. I’d have to figure out where to do that. Preferably within the next week.

  The problem was, I had not lived at home with my parents for six years. At age twelve, I had moved in with my grandmother. I was legally emancipated at sixteen, and I’d lived in several places in the two years that had elapsed between that day and the day I’d left for New York. There were a number of people who “looked out for me,” but that was quite different from taking me in, were I to show up on their doorstep sick and alone. The last address where I had received mail was at the home of a woman named Rose-Leigh, who had taught at my high school and was an accomplished scientist. We had spent many late-summer afternoons identifying flora at her kitchen table over tea. Rose-Leigh had lost her youngest child some years before, and as a result of that unfathomable loss she always looked, to me, how grief felt. Although she was remarkably kind to me, and truly brilliant, what I remember most about her is the gray, almost woolen heaviness of her spirit.

  Weighing my options, or lack thereof, I plodded unsteadily across the street and up the walkway to the office of my beloved psychology professor, Elizabeth. Her expression softened as she listened to my attempt to explain that I was sick and no one knew why, but that I wanted to be at Sarah Lawrence more than anything. My home was here, my heart was here, and I didn’t want all my work to go to waste. I would be back in the spring, I vowed (or implored) and blubbered on as though, if I just sat there in her office long enough, and talked and talked and talked and never stopped, I wouldn’t have to leave after all.

  “Pausing isn’t stopping,” she told me, her earnest parting wisdom. I said goodbye to all my professors, and every single one of them said they looked forward to seeing me back in the spring. I never saw any of them again.

  CHAPTER 2

  I know you are only a tiny little girl, but there is some kind of magic in you somewhere.

  —Roald Dahl, Matilda

  IF WOMEN HAVE BECOME SYNONYMOUS with hysteria, malingering, and hypochondria in a clinical setting, then it has far less to do with the natural inclinations of women and behavior than it does with the history of medicine. The medicalization of female internal sensations, which began as early as the 1800s, paved the way for the struggles modern women face in having their symptoms taken seriously in a medical setting.

  Even outside of the doctor’s office and in social settings, women face a constant barrage of doubt that undermines their faith in their own internal experiences. They begin to question their reality. It’s not as though it has always been just patriarchal male doctors squelching women in the exam room—though patriarchal male doctors still do that. Women themselves have often subscribed to the wandering uterus theory of hysteria, mostly because they have been powerless to question it.

  The reported symptoms of many of the women documented in early case studies of hysteria, such as Sigmund Freud’s patient Dora, and a patient of his colleague Josef Breuer’s named Anna O., are eerily reminiscent of what some of the women I’ve talked to in the present day have said. It’s a symptom profile that includes both pelvic pain and vague abdominal pain—the origin of which is further complicated by its somewhat amorphous nature. They report grinding fatigue, both physical and mental, that is extremely difficult to articulate and even to comprehend. To fathom that level of fatigue, particularly when it has become chronic, and therefore begins to seem normal, is not only challenging, but legitimately depressing.

  When I happened upon Gilda Radner’s memoir several years ago, in the midst of my own medical turmoil, I grew deeply concerned about her life. The Saturday Night Live alum—wife of Gene Wilder and a gifted comedienne in her own right—left a lasting impression on me. I had not realized that she had died of ovarian cancer; nor had I realized that she was only forty-two years old when she did. What troubled me even more were the passages of her book recounting those final years of her life. It was the 1980s, and she was at the height of her popularity.

  “My ovaries became the center of my universe,” Radner wrote in It’s Always Something. It was an eerie statement, considering what happened later, but she was referring to her struggle with infertility, which took place long before the word “cancer” was ever uttered to her as a diagnosis for her ailments. She and Wilder spent years in the slog of medical procedures that any couple undergoing in vitro fertilization (IVF) treatments must endure: the ultrasounds, the laparoscopies, the coming-into-a-cup. In her memoir she described the sequence, and one can’t help but feel incredibly worried by the image of Gene Wilder—with his big, sad eyes—trying to ejaculate into a cup next to a stack of Playboy magazines in some nondescript, sterile, closet-like hospital room at the University of California at Los Angeles. When the IVF didn’t take, Radner elected to have her tubes opened surgically. It was a risky alternative, since this type of “microsurgical technology” was still relatively new in the mid-1980s.

  The surgery didn’t exactly cure her of her ovarian-focused universe: Radner was then tasked with determining exactly when she was ovulating, so that she might maximize her chances of conceiving. She went out and bought an at-home ovulation kit (“Where you are the scientist,” she wrote), but didn’t tell Wilder what she was up to, as he’d been more than a bit traumatized by the whole IVF experience. She recalled the fervor of one morning when she couldn’t get the cap off the test vial. Desperate, she raced into the bedroom, poked a still fast-asleep Wilder, and said, “Don’t ask me any questions, just take the lid off this vial.” He did, and he never asked her about it—having done so while still fast asleep.

  How could she have known, at that moment, in the early years of her marriage to Wilder, that the focus on her ovaries would never let up? That the very organs she doted upon—hoping as she did to cherish them into submission, so that they might bend to her will and give her a baby—were plotting to take her life? That even if she’d had a baby, she would have been dead before the child started school?

  Radner’s story haunted me, not because she was some comedic legend whose life was cut short, or just because she’d died from cancer in her ovaries, but because she had died as a result of her doctors not believing her when she said she was unwell. In fact, one doctor told Wilder that Radner was “a very nervous, emotional girl. She’s got to relax.”

  The only thing any doctor could identify in Radner’s lab tests was Epstein-Barr virus, which causes mononu
cleosis. That wasn’t altogether unusual, as many people have the antibodies for it. Her symptoms persisted, however, and worsened. She would be fine for, say, ten days, and then, “seemingly around my menstrual cycle,” she wrote, “I would go into this severe fatigue and run a low grade fever, then I would be okay again.” She went to her gynecologist, who assured her that nothing was wrong; it was just “mittelschmerz,” the sensation some women feel at the time of ovulation. “Now I had Epstein-Barr virus and mittelschmerz,” she wrote. “Fitting diseases for the Queen of Neurosis.”

  Radner referred to herself as neurotic, and maybe she was. But neurotics get cancer too. Over the next few months, the grinding fatigue continued, as well as a seemingly never-ending plague of stomach and bowel problems. Her doctor said she was probably taking too many vitamins, although she had been told to take them to counteract the grinding fatigue she was experiencing. She saw yet another doctor who thought her stomach problems were—surprise!—the result of anxiety and depression. Then she got a new symptom: aching, gnawing leg pain. It started in her upper thighs and spread into her already weak legs. Her doctor gave her a high dose of anti-inflammatory medication, which caused her to have terrible nausea and vomiting. Her doctor then gave her medication to reduce the acid in her stomach, so that she could take the anti-inflammatory medication. The leg pain worsened. Her doctors told her to take a Tylenol.

  Ever determined to prove she was ill, even as she began to physically waste away, Radner saw a doctor in Boston—who gave her an antidepressant. When she didn’t seem immediately placated, he asked her what she was so afraid of. “I am afraid that it is cancer,” she told him. He told her to just keep having her blood drawn and to stay in touch with her doctor, “so that you can set your mind at ease.”

  She went home. She tried acupuncture. Holistic medicine. She took supplements. The pain in her legs kept her up at night. She bloated so severely that she really did look pregnant—which must have been such a fantastically cruel reminder that she had not been able to conceive.

  Radner dutifully kept having blood drawn, and then, finally, on October 20, 1986—ten months of her insistence later—her doctor called. Her liver function, he said, was irregular. She asked him what that meant.

  “It’s probably nothing,” he said, but he wanted her to come in anyway. It was Stage IV ovarian cancer.

  “Gilda cried,” Wilder recalled in an essay he wrote for People. “But then she turned to me and said, ‘Thank God, finally someone believes me!’”

  The “treatment” was a complete hysterectomy, which dashed any lingering hope for conceiving a child that she may have harbored. Then, intense chemotherapy and radiation, which made her so sick that those around her thought she would die—and she, at times, wanted to. The experience irrevocably changed her, a fact that became obvious, even on her good days.

  “No one recognized me at all,” she wrote. “I began to introduce myself as, ‘I used to be Gilda Radner.’ That was how it felt. I used to be her, but now I was someone else.”

  In the two years after she was diagnosed, while undergoing treatment, she also began working on the memoir, one that focused heavily on her experience. She knew even as she was still very much in her “weird life,” as she called it, that her experiences might help someone else—even if it was too late to use the knowledge she’d gained for her own benefit. After Radner’s death in 1989, Wilder continued her work, becoming an advocate for research and awareness up until his death in 2016.

  “For weeks after Gilda died, I was shouting at the walls. I kept thinking to myself, ‘This doesn’t make sense,’” Wilder wrote in a guest article in People two years after her death. “The fact is, Gilda didn’t have to die. But I was ignorant, Gilda was ignorant—the doctors were ignorant.”

  When I finished reading her memoir, I listened to the audiobook she had recorded of it just a week before her death. Her voice is at times alarmingly thready, almost hollow. I know she was still alive when she recorded it, but as I listened, I couldn’t help but feel like she had already become a ghost. The exhaustion in her voice as she recalled her unceasing attempts to convince doctors that she was ill—and later, at their urging, to convince herself that she was not—echoed through me, resonating painfully.

  As Radner wondered aloud in her memoir, what came first, the illness or the depression? Was being sick making her depressed, or was depression making her sick? How many of us have asked that same question, or ask it almost daily as we slog forward in time? It’s the Ouroboros of pain from which we cannot escape, no matter how hard we try, unequivocally felt by us and questioned by everyone else—until we, too, are forced to doubt the veracity of our reality. I couldn’t help but wonder as I pored over Radner’s memoir what would have happened if it had been another body system afflicted. Radner had started smoking at the age of fourteen. What if she’d had lung cancer instead? Would she have been taken seriously the first time she reported symptoms? Would she have received a diagnosis sooner? Would the treatments available to her have been more curative, because more research and attention is paid to cancers like that?

  If I, or any other woman whose gynecologic cancers or pathologies had gone undiagnosed, had just been sick in some other part of the body, in some other way, would it have been any different? Or would it not have mattered? Was the underlying preexisting condition being female? Does the congenital lack of a Y chromosome predispose a patient to worse outcomes regardless of what condition or disease they present with?

  DURING THE 1600S, SEVERAL MALE physicians, such as John Sadler and William Harvey, asserted that the uterus was the seat of all ills in a woman—and that the organ itself was central to the body. Whatever it felt would influence everything else: the rest of her body followed suit. It was almost seen as a possession, of sorts, and often it was excised, removed in the hope that the woman’s symptoms would disappear once her unruly womb was gone.

  The womb itself has often been viewed as something of a live animal within the body cavity, a unique distinction that does not apply to other, lesser organs. A familiar notion in Central Europe was that the uterus was animalistic: the womb was sometimes referred to as a muttern (German for “toad”). The symbolism was based in the idea that the uterus was capable of “hopping around” inside a woman’s body.

  Hysteria was something of a catch-all diagnosis in its day. Symptoms ranged from the frustratingly vague to the impressively grotesque, and the uterus was almost always blamed for a hysteric woman’s suffering. It was all supposedly explained by something called “reflex theory,” which meant, essentially, that physical symptoms resulted from mental overexertion, excessive emotions, and the like.

  It’s no easier today to describe one’s internal sensations and physical experience, but during the latter part of the twentieth century, the task was further complicated by a simple lack of understanding about how the central nervous system functioned.

  It was also (and arguably still is) difficult for medical professionals to assess irritation versus inflammation. Irritation can be experienced by a patient and articulated, but it cannot be measured. Inflammation, on the other hand, is also often felt, but can be detected through bloodwork or examination of the affected tissues. John Burns, a Scottish physician in the 1800s, was one of the first to really study the two. He tried not to use the terms interchangeably, because he did not believe they were the same. The concept of “irritation” was a broad one, and could be used to legitimize almost anything a doctor encountered, whereas “inflammation” could be traced to some biophysical marker, something that could be felt and seen. “Irritation” could cloud over cases where inflammation was present, but only sporadically or on a cyclic schedule. This kind of thinking also furthered the widely held belief that people (women, in particular) could be “excitable,” and thus, that their lives could be improved by trips to the seaside for a rest—or tidily hidden away in an asylum. Or an attic. If a woman was not actually sent out of the home, she may well have been m
ade prisoner in her own house, her own bedroom, even—a la Charlotte Perkins Gilman’s “The Yellow Wallpaper.”

  “Nervous disease” was a term more descriptive of a patient’s personality than of a patient’s actual, physical nervous system, especially when the patient was a woman. The hustle and bustle of modern life during the Industrial Revolution was thought to be so overwhelming, so overstimulating, that it was capable of causing a nervous collapse in those who were, perhaps, a little delicate. But at least since the 1700s, there had also been a distinct group of “nervous diseases” that were pathologic in nature, and weren’t to be confused with the “nervous hysterias” of the era. These included visible lesions on the brain or spine (as in most cases of multiple sclerosis) as well as “functional” diseases, such as epilepsy, or other ailments that may have had organic causes that no one had yet discovered.

  Unlike many of today’s diseases, endometriosis included, by the mid-1800s hysteria had a pretty standard clinical presentation. If a patient exhibited a certain constellation of symptoms, she could quickly be diagnosed as a textbook hysteric. This development came in part thanks to the work of Jean-Martin Charcot, who believed that hysteria was a “real” malady, and not just something manufactured psychologically. It was he who began in earnest the search for the lesions that would qualify hysteria as an organic disease.

  Charcot, to his credit, did for a time legitimize hysteria as an actual medical diagnosis: specifically, a neurological disorder. The creation of a clinical portrait is down to him: “In the hysterical attack,” he wrote, “nothing is left to chance. To the contrary, everything unfolds according to the rules, which are always the same. They are valid for all countries, epochs, races—in short, universal.”

  By looking at brains postmortem, Charcot began to try to correlate the symptoms a patient had demonstrated with abnormalities in the brain. It was through this investigation that he discovered diseases such as amyotrophic lateral sclerosis, or ALS, today often called Lou Gehrig’s disease. Hysteria, he believed, would be found in the brain and not the reproductive organs.