Ask Me About My Uterus Read online

  We each carried guilt regarding the other, but we managed to begin the process of absolving it—right there next to those Coleman tents. When we stepped outside, he with a brand new jacket, it had stopped raining. It was inexplicably sunny and beautiful as we went our separate ways.

  I went back to my apartment alone. There had always been bits of him around, dust of his in the air. I slowly reclaimed the space, made the mess my own. I let the good memories float unbound around me. Every experience that reaffirmed I had known happiness, and had been capable of love, was worth grasping for.

  CHAPTER 7

  I began to have a smaller regard for the ability of doctors than I ever had before, and a greater one for myself.

  —Nellie Bly, Ten Days in the Madhouse

  IN HER MEMOIR GIVING UP THE GHOST, Hilary Mantel recounts her experience of being diagnosed with endometriosis in the late 1970s. Her journey, like mine, began when she was nineteen, and she had a hysterectomy when she was twenty-seven. The stories of so many women I’ve talked to echo hers. You’d think that in the forty-some years that have elapsed, something would have changed, and a woman my age wouldn’t be having the same experience that Mantel, now in her sixties, had decades ago. I cringed reading passages from her memoir because the feeling of recognition angered me. I was angry for her, that she’d suffered, but also angry that not much seems to have changed.

  “He calls me Little Miss Neverwell,” she wrote of one of her doctors. “I am angry. I don’t like being given a name. It’s too much like power over me.”

  Mantel, like many other patients still today, took the diagnosis of endometriosis to her physician (okay, several of them) after reading about it in a medical textbook. But this only came after years of being misdiagnosed with what she recalls as “stress, caused by over-ambition,” for which she was overmedicated with tranquilizers. She mentions frequently that she probably would have been better off saying nothing at all of her physical symptoms—which were always seen as psychosomatic complaints. “The more I said that I had a physical illness, the more they said I had a mental illness,” she wrote. “The more I questioned the nature, the reality of the mental illness, the more I was found to be in denial, deluded.”

  An accomplished novelist, Mantel was once told by a psychiatrist to stop writing. I, for one, am glad that she didn’t, if only because she did write that memoir (a bit reluctantly, it seems, if you take in her self-deprecation throughout). Endometriosis, she noted, had a reputation for plaguing high-achieving women, addressing the phenomenon with a single, biting sentence: “It used to be fashionable to call endometriosis the ‘career woman’s disease’: the implication being, there now, you callous bitch, see what you get if you put off breeding and put your own ambitions first?”

  As a woman with endo still seeking information and treatment in the early 1980s, Mantel endured the height of this particular perception of endometriosis. But such descriptions seemed to have a somewhat similar bent as early as the 1930s: American physician Joe Vincent Meigs, for example, found endometriosis to be the result of women delaying childbearing too long. Those who went against nature became the victims of nature’s wiles.

  Comparing women to apes seemed perfectly reasonable to Meigs, who wagered that female apes probably didn’t menstruate much at all, because they began having babies as soon as they were able and didn’t stop “until [they were] dead.” He added: “As women have the same physiology [as apes] it must be wrong to put off childbearing until 14 to 20 years of menstrual life have passed.” One wonders if Meigs actually knew any women.

  Meigs also suggested that endometriosis was primarily limited to the upper echelons of society—as these women seemed to have “a difference in attitude toward childbearing”—and basically, that they should just stop whining and have babies if they wanted to be cured. He was also eager to remind his colleagues to only encourage reproduction among their higher-class patients, however—and never those in the lower classes. The eugenics vibe is real here, and it was Meigs’s accounts that laid the foundation for decades of research that focused on endometriosis as a disease of well-educated white women. Specifically, a disease of fertility, above all else.

  A January 2017 study reported that one in ten British women experienced painful sex—and the majority of the women experiencing it were in middle age (the second-largest group was younger, ages sixteen to twenty-four). The data was gathered over a period of two years from nearly 7,000 women in the United Kingdom. Not surprisingly, the findings indicated that there are myriad reasons why a woman may experience painful sex. The main limitation of the study—as is true of most existing surveys that attempt to capture data about pain—was the inability to firmly denote causality. It seems likely that much of what women self-reported was interdependent: that is, each individual’s experience with painful sex is ultimately determined by many variables, a few of which they have little to no control over (their partner, a physician, etc.). About 2 percent of the women in the study reported painful sex that occurred frequently and that had been plaguing them for longer than six months, causing them a great deal of distress. Researchers referred to this category as “morbid painful sex.”

  The study had primarily surveyed sexually active women who were part of a much larger cohort—but there were some women who said they were no longer sexually active because of the pain during sex. They reported avoidance, fear of pain, and lack of interest as the reasons why they were no longer sexually active. Fully 62 percent of women who reported experiencing painful sex said they were no longer interested in having it, compared to 31 percent of women who did not report painful sex. Although these women did self-report their experience for the survey, whether they had been able to report their pain to others with any degree of success (partners, physicians) is less clear. The researchers pointed to other studies in their conclusion, so as not to let this point be lost: “Only a fraction of women affected by genital pain disorders ever receive an official diagnosis: 1.4% in a study of women meeting criteria for vulvodynia [vulvar pain]. In a previous paper… we reported that less than half of women with morbid symptoms of sexual pain had sought professional help in the last year. Among those who do seek treatment, negative experiences are common, including invalidated concerns, not receiving a formal diagnosis, and being given treatment perceived as ineffective.”

  IN THE MONTHS AFTER MAX and I broke up, an isolated sexual experience proved to me that it was never that I had fallen out of love with him. Nor had I ever stopped being attracted to him—something was very wrong inside my body.

  Not that I planned it, but when the opportunity presented itself to have sex with a man who was in every conceivable way Max’s opposite, I recognized that it would provide me with invaluable information. In the moment, admittedly, I was not quite that clinical about it: I just liked the guy a lot. His name was William, and unlike a lot of people named William, he didn’t go by a nickname. It wasn’t pretentious at all—he was the least pretentious, most easygoing person you’d ever chance to meet. For whatever reason, he was William in toto. Had things gone differently that night, I would have no doubt seriously dated him, and who knows where it might have gone?

  William happened to be in town one weekend a couple of months after Max and I broke up. He knew both of us pretty well, and I think that, like many people in our lives at that time, he thought Max and I would be together for the long haul. Knowing about the split, he dropped by to say hello and see how things were going. We chatted, and although I can’t exactly tell you how we got there, he turned to me with a rather sweet apprehensiveness. He had apparently harbored feelings for me for quite some time. Not that he intended to capitalize on the recent breakup just then, but should I ever be interested…

  “We could have sex now,” I shrugged. He didn’t say anything at first, and I thought maybe my forwardness had been a little much. I have never been what you might call subtle.When I looked up to where he was standing in the doorway, he was beaming at me
.

  “I’ve, uh… it’s just…” he squeaked. “I’ve fantasized about this for a long time.”

  “Oh,” I said softly, flattered and vaguely terrified by the revelation. “So, um. Do you have a condom?” I don’t generally make it a practice of crushing men’s dreams, but as sheer panic crossed his face, my heart sank.

  “Hold on,” he said, fumbling for his keys. “I’ll just—I’ll run to the store just, uh. Just wait here and I’ll—”

  He disappeared out into the hallway, and a few minutes later, I heard his engine rev. I recognized that, if I should want to change my mind, I now had the opportunity to do so. But I didn’t. For the next ten minutes or so I sat calmly on the bed. His condom run completed in record time, I heard him powering up the stairs—ripping into the box as he did—and I found myself unexpectedly charmed.

  The experience of being intimate with him bore no resemblance to anything I’d become familiar with, but that hardly meant it was bad. If anything, as he gently reveled in his fantasy of me come to life, I found myself earnestly hoping that it would be different in the most profound of ways: that it wouldn’t hurt.

  I intuited from his attentiveness, his thoughtfulness, the sort of gentle reverence he had for the moment and for me, that he was a good lover. I was somewhat startled to realize that an hour had gone by and he was in no hurry—just pleasantly sedate, with a bit of a doofy, disbelieving grin. By the time he actually penetrated me, I’d been enjoying his joy and my own sort of pleasant surprise that I’d all but forgotten I had been worried about the pain I’d come to expect.

  I thought for a brief moment before we began having intercourse that maybe, just maybe, it wasn’t going to hurt. So when that same familiar pain arose and displaced my pleasure, stole it from me, I was stricken. Whereas before I had been disappointed, embarrassed, guilt-ridden, and sexually frustrated, this time what filled me was exhaustive rage. Then, a sickening fear.

  Afterward, I did not want William to stay, but not because of anything he’d done or not done. I just didn’t want him to hear me crying in the shower. I didn’t want him to feel the sticky warmth of blood on the sheets in the night. I didn’t want to wake to see him the next morning, knowing there was no way to explain that he’d hurt me, but the fault was mine.

  As the months turned to years, I continued to be confused by the fact that although I was capable of sexual arousal, and, theoretically, enjoyed a lot of what sex had to offer, it always came to a sudden, wounding halt once any kind of significant penetration occurred. I was also well aware that orgasms—which cause mild uterine contractions—left me with a heavy, nauseating ache for at least a day. Even orgasms that resulted from clitoral stimulation alone would cause that post-heat ache. Sometimes it was actually worse, and lasted longer—I assume because the orgasms were better.

  As I attempted to construct some kind of meaningful discourse about this experience, I began to consider how my analysis of my pain—however thorough—had always been criticized by others for one glaring flaw: a small sample size. It was bad enough that my sex life had become all but reduced to a clinical trial, but the constant rhetoric of “you just haven’t had enough sex with enough people” from a few female friends confounded me. And it was bad enough when male doctors disregarded my pain, but when women did—especially women I considered friends or mentors—I almost felt betrayed. What if I didn’t want to gather men like specimens? Wasn’t it enough that I had been engaged in a consensual sexual relationship with two men, both of whom I cared about deeply, men whose company I enjoyed? Wasn’t it enough that I had wanted to be able to have sex with them without the need for an official investigation or some kind of epidemiological survey? What difference did it make whether it hurt to have sex with ten men I didn’t care about or one man that I did?

  I’m sure it was an attempt to be helpful, and it wasn’t as though this was something that had been repeated to me by every person I encountered. It didn’t have to be—once it got into my head, I had to chew it over. Eventually, though, I abandoned my computations in favor of my feelings—not particularly scientific, but not something I could altogether discount. The implication seemed to be that I was in pain because I was sexually inexperienced, which kind of missed the point as far as I was concerned: it wasn’t the sex I found confusing, it was the pain that resulted from engaging in it. The fine details might change, but the mechanics of heterosexual intercourse would be the same. Therefore the number of sexual partners should not matter.

  What if a more Freudian interpretation was necessary, then? Could it be that, beneath the implication that I just didn’t “get” sex yet, there was this undercurrent of doubt, on the part of doctors and friends, in my ability to interpret pain? And perhaps the doubters were correct: I was misinterpreting pleasure as something unpleasant, perhaps even subconsciously? Or consciously attempting to evade the physical aspects of my sexuality? Could I be using my pain for some other as-yet-to-be-determined reason, perhaps as a tool of manipulation? These theories seemed a lot more complex and nuanced than my problem when it came to sex: it hurt.

  Despite my efforts to argue the contrary, I never seemed to be able to articulate properly that the pain was irrespective of my state of arousal, my interest, or my skill. It existed even in the absence of a partner—a fact I was rarely able to bring up, as I found people were perfectly happy to gossip about sex so long as we didn’t traipse into the wanton world of masturbation. Even doctors wouldn’t ask; I always offered the information because I found it startling and distressing and figured it was therefore relevant. I was the primary source of data for the investigation into my condition, and yet it often felt like the data I presented was questioned by others as unreliable. Thus, I questioned myself.

  Eventually, I could no longer put energy into the inquisition; nor did I have the wherewithal to grieve its loss. Of all the demands of humanity that I was struggling with, there were things of greater importance on the hierarchy of needs than sex that I had to deal with. I never made a decision to be celibate. I am still rendered weak-kneed by attractive men I encounter in my travels. I am not, nor have I ever been, “frigid” or “prudish.” I am, however, resigned: a woman’s sexual pleasure is rarely anyone’s priority, not even her own.

  IN HER REVIEW OF LITERATURE on endometriosis back in 2003, Carolyn Carpan explored how the media—women’s magazines, national news outlets, and so on—had presented endometriosis to the general public. In recent years, as several high-profile celebrities have come out as having endometriosis, the word has occasionally popped up more. A simple Google Trends search from 2004 to the present shows a fairly steady interest, but the spikes can be correlated to those announcements. The word inexplicably reached peak popularity in September 2004—the only article I could find published that month was from the BBC, which mentioned endo but was actually about a cannabis-like chemical that US researchers believed could be important to a normal pregnancy. In other months of 2004, the BBC also had several other articles about endometriosis, but overall, the archive search of news turned up just three pages of results.

  Using Google’s Ngram Viewer, however, we can look at the presence of the word “endometriosis” in English-language texts over a much longer period of time—several centuries, in fact. If we set our parameters to begin in the 1800s and end with the present day, the upward trend is obvious. Meigs’s work in the 1930s seems to have started a slight upward trend over the next decade, which leveled off for awhile in the 1950s—which is not surprising, considering that women in that decade were somewhat notoriously subdued by a mix of “uppers” and “downers,” and their gynecological experiences, such as childbearing, often occurred behind a veil of “twilight sleep.” After World War II, “pep pills”—amphetamines that had commonly been handed out to soldiers—made their way back to the home front. They were marketed to America’s housewives as a cure for depression, with the added benefit of weight loss. But the amphetamines would keep them awake at night, espec
ially at higher doses. Furthermore, once a woman began to develop a tolerance, she’d need something to help her sleep. That’s where barbiturate sedatives came in. At one point, there was so much pharmaceutical competition that one company actually developed a drug that mixed a barbiturate (amobarbital) with an amphetamine (dextroamphetamine). It was called Dexamyl, and it was sold as a diet drug, an antianxiety drug, and an antidepressant. Other, similar drugs followed, such as a mix of amphetamines and phenobarbital.

  The use of these drugs reached epidemic proportions throughout the 1950s and 1960s, but it wasn’t particularly illicit. Women experienced a pharmaceutical whirlwind when they went into the hospital to have a baby, for example. Many women alive today, our mothers and grandmothers, probably gave birth under the influence of a cocktail of drugs, such as morphine and scopolamine. A woman would be given an injection even before she was in full-on labor; it was designed to keep her aware enough to take commands from the doctor when she needed to deliver, but also gave her total amnesia about the experience. Which, not infrequently, involved her being tied down to the bed. Many women from that era can remember going into the hospital, getting a shot, and waking up with a clean, pink, sleeping baby being placed into their arms. But there were also plenty of women who woke up to discover they’d had a C-section, or some other intervention to which they had not strictly consented, because they’d been unable to deliver naturally—and it may have been that the drugs compromised their ability to push effectively. Make no mistake: the twilight sleep protocols weren’t about making childbirth easier for women—it was about making it easier for doctors.