Ask Me About My Uterus

by Abby Norman

  I’m certain that women were suffering from endometriosis in the 1950s and 1960s—but I suspect that many of them were self-medicating, and “grinning and bearing it” when they weren’t, as was the expectation of their husbands, families, and doctors.

  From the 1960s to the mid-1970s, there was a pretty steep decline in references to endometriosis—which seems peculiar to me, because it was the height of the feminist movement. From the 1980s to the present day, however, there has been a marked and steady upward trend, probably aided in part by the ubiquity of the Internet.

  As Carpan pointed out in her review, though, just seeing the word more doesn’t necessarily correlate to a greater understanding of the disease. If anything, the way endometriosis has largely been depicted by the media has lent itself to the stereotype presented to Mantel, that endometriosis is “a career woman’s disease.” It’s not fair to blame the press entirely for this characterization—after all, reporters are only citing research. For their quotations, they’re looking to doctors, a disproportionate number of whom are middle-aged white men who are somehow experts on a disease they will never have.

  The position of these articles, even if they are admirably researched, is very much in the service of the intended audience. What seems to be consistent across the various genres of media, however, is the focus on endometriosis as primarily a disease of fertility. The women interviewed are always devastated that they have become, or may yet become, infertile. The doctors encourage young women with endometriosis to get pregnant as soon as possible—even claiming that it may “cure” their disease. Catherine Kohler Riessman, a research professor in the Department of Sociology at Boston College and an emerita professor at Boston University, has written extensively on the medicalization of women’s health. She suggests that this particular framing of endometriosis comes from physicians’ reinforcement of gendered, social norms through the pathologizing of something deemed abnormal—such as a childless woman.

  I have often felt that my explicit intention to be childless had a direct and exceedingly negative impact on my diagnosis and treatment, especially because it preceded any problems I had with my reproductive system. My family often recalled how, when my brother was still a baby—so I couldn’t have been more than four years old—I announced one day that I didn’t want to go to heaven because “the baby Jesus probably cries all the time.”

  Prior to the first surgery with Dr. Paulson, she’d made a point to impress an awareness upon me that any procedure involving my reproductive organs could conceivably pose a threat to my fertility. I could not sincerely behave as though the loss of my fertility was my biggest concern in that moment; nor could I do so after I found out she hadn’t removed the cyst, because the surgery could have been injurious to the fallopian tube to which it was attached. Before that surgery—and any surgery I’d ever have—I made it quite clear that even if it meant I’d lose an ovary, I expected whatever needed to be dealt with to be dealt with. Because even if I had wanted children, I certainly didn’t want them at nineteen, or even at twenty-three. Even my mild attempts to entertain the idea of childbearing were never something I could envision happening before my mid-thirties, and that was a solid decade away. I tried to explain this to Dr. Paulson, to Dr. Wagstaff, to Jane—to anyone who would have listened, really. And inevitably, I would wince with a little half-smile and offer a half-hearted, “Maybe I’d like to have a baby when I’m older…” in order to placate them, because expressing a preference toward childlessness is apparently quite the faux pas.

  The things that actually did concern me—the pain, the nausea, the complete loss of everything that I loved and that made me happy (food, dance, sex)—didn’t seem to carry the kind of weight that concerns about my fertility did. How, I wonder, did the doctors expect me to get pregnant if I couldn’t have sex? What if I had said, “Okay, fine, I’ll have a baby—but how, pray tell, shall I go about it when sex is excruciatingly painful and I can’t tolerate penetration long enough to be fertilized?”

  Why wasn’t it enough that I was a young woman who wanted to be sexually active, but couldn’t be? Did the fact that I wanted sexual pleasure, intimacy with a partner—dare I say, fun?—without the responsibility of procreating make me somehow less than the women who did? Did people, medical professionals and others, really think that I’d asked for it, somehow? That endometriosis was my punishment for wanting a career? For wanting sex and pleasure? For rejecting the biological imperative to procreate? Maybe it wasn’t quite so overt, but, as Carpan discovered through her review of the literature, maybe it doesn’t even have to be. These beliefs are pervasive, but in the same quiet, pernicious way that endometriosis is. The way ovarian cancers are. Even the diseases that befall women are silent, controlled, unseen.

  At least that’s how they’re characterized in medical textbooks, largely because those who have historically done the characterizing are men. If women had been their equals in the fields of science and medicine, if they could have contributed clinically and academically during the formative years of those disciplines, I suspect the characterizations would have been quite different. Although a male physician could quite easily, and convincingly, assert that ovarian cancer was “silent,” if you were to really listen to women who have had ovarian cancer speak, you’d find that it wasn’t so much that the disease process was silent—but that they were. Conditions that seem to lurk unnoticed in a woman’s body go unnoticed by others because, for one thing, they are an assumed part of womanhood, and, for another, women are taught to keep those pains private. I’ve often found it curious that when a woman is suffering, her competence is questioned, but when a man is suffering, he’s humanized. It’s a gender stereotype that hurts both men and women, though it lends itself to the question of why there is a proclivity in health care, and in society, to deny female pain.

  The most oft-cited study directly addressing this issue, “The Girl Who Cried Pain,” was published in 2001. Authors Diane E. Hoffmann and Anita J. Tarzian open with the passage from the Bible where God says women will bear children and it will hurt A LOT. I knew the quote, but I had never really considered the next phrase, which is, “… yet your desire will be for your husband, and he shall rule over you.” Which kind of makes it sound like a damned if you do, damned if you don’t situation. Was the intent all along for sex to hurt for women, even if they were having the kind of sex that the Bible says God is okay with?

  After the introduction, Hoffmann and Tarzian drop a real whopper of a statement: postoperation, women are more likely to be given sedatives for pain, whereas men are more likely to be given pain medication. There are several logical explanations for this, my favorite of which is the idea that men are naturally so stoic that if they say they aren’t in pain, they must be in pain. Women, meanwhile, just complain a lot. Men were more likely to receive pain medication postoperatively than women following heart bypass surgery, for example. Women were more likely to receive sedatives; but even when women did receive pain medication, they got considerably less of it than the men (even after accounting for differences in weight, which affects dosing). If you extrapolate a little, it’s pretty easy to see that women were given sedatives because they were perceived to be anxious more than they were perceived to be in pain. Such findings apply even in children. One study showed that boys were more likely to be given codeine postoperatively than girls; the girls, meanwhile, were given acetaminophen—that is, Tylenol.

  Men are expected to be stoic in the face of pain, which is bad enough for them—but their dedication to that stoicism only makes it harder for women to have their pain taken seriously. Women, it seems, have to prove that they are as sick as men before they will be given the same level of care. The harder a man pushes himself to deny his own pain, the harder a woman will have to fight to have her pain acknowledged.

  Although it’s true that men may be pressured into stoicism socially, when I think of stoicism in the face of pain, I think of women. Admittedly, this is anecdotal ev
idence, but from talking to my women friends, I’ve observed that whenever a guy gets a cold, he becomes a weeny, staying in bed for three days with a runny nose. The women, meanwhile, get up and go to work with fevers of 102. It’s not always the case, of course: my father practically never missed a day of work in his entire life, save for the half-day off he took when he had some teeth pulled and couldn’t drive, while my mother was so ill that she never worked.

  Most of the women I know, especially those who have children, couldn’t be stopped from taking on their daily schedules by anything less than a complete limb amputation. Even then, I’m sure they’d just stuff it into a diaper bag and carry on. I wish I could say I was being entirely facetious here, but I’m not, and history has my back on this. Women have been laboring through their labor for centuries—only pausing momentarily during the bountiful harvest to push out a baby, popping its squalling mouth onto their ample bosom and continuing to shuck corn. No one else in the field probably even batted an eye, further reinforcing the idea that female pain is an evolutionary constant.

  All of this relates to that old mandate in 1993 when researchers figured out that men and women had different drug responses. The one that said: actually, you have to include women in your clinical research—sorry. Things began to change with the NIH Revitalization Act passed that year. And yet, since women were excluded from clinical research for such a long time, it only makes sense that we would still have more data on men. More data on men that is largely still being analyzed in medical journals by men, and then being read by men. Because, you know, despite passage of the NIH act, we’re not quite at the point where women are dominating clinical research or medicine.

  Two terms that are necessary to understand when talking about pain, and that Hoffmann and Tarzian differentiated beautifully in their paper, are “threshold” and “tolerance.” Pain tolerance is talked about frequently, especially in the context of sex differences. Tolerance refers to the point at which a person in pain can no longer tolerate it. Their pain threshold refers to the level at which they first begin to consciously experience pain. We talk a lot about a person’s pain tolerance but far less frequently about their pain threshold. One might assume that if a person has a very high pain threshold—that is, they don’t begin to feel pain for a long time compared to others in the same situation—they may also, then, have a very high pain tolerance. Or the inverse: that someone who has a low pain threshold has, too, a very low tolerance for pain.

  I’d say that’s probably an easy conclusion to reach, but one that lacks the nuances of how human beings actually work. How they adapt to the situation when pain becomes present, and then when it becomes constant. I’m sure we all know a story of a woman, a friend or coworker, or our own mothers, who went into labor only to continue on about their day. They cleaned the house or ran an errand, pausing occasionally as a contraction momentarily swelled. Other women may not begin to feel the punch of labor until it has progressed much more, at which time they clamor for an epidural. I’ve known women in both camps.

  When I first got sick, I had been dancing on a full-time schedule for at least a year, and while I would admit to a low pain threshold, my tolerance, once I was in pain, was relatively high. I could perceive pain astutely, perhaps because dancers come to understand parts of their bodies with a kind of intimacy most people go a lifetime without knowing. I could feel the moment before pain started in some muscles in my legs.

  I anticipated it, braced for it even, whenever my bad ankle was required to carry its weight. I wouldn’t be surprised to hear that many dancers, athletes, movers in other methods, have this sort of sixth sense for pain. The pain I experienced when I fell ill, however, was so abrupt that I received no such premonition. There was no warning. And what went unappreciated, I think, was that I actually had quite a high degree of tolerance for the pain I was in. I couldn’t seem to explain to anyone that I actually wasn’t terribly distressed about being in pain—pain became kind of a normal part of my life. Rather, I was frightened because it was a new pain, one I had never felt before, and the symptoms associated with it made the whole experience something I couldn’t make sense of. I wasn’t afraid of the pain, necessarily—I was afraid of what was causing it.

  There were certain pains that I could dance through. Certain pains I’d learned to live through, and with, that I came to know in early childhood. Hunger, for one, was a pain that I knew well, until I became numb to it. I understood that pain was a language of the body, but that my body wasn’t always trying to communicate an emergency.

  Sometimes it was just saying, I’m stretching, I’m growing, I’m alive. If it was crying out, a shrill “enough! enough!,” I’d usually ask it to press on a little more. Sometimes it would sigh, submitting to the movement, and sometimes it would resist: “No, I really mean it!” And I would become bitterly subservient to its need for rest. The pain I had come to live with did not allow me to ask it anything.

  But I am not the first woman—nor, sadly, am I bound to be the last—who has made a life as the mistress of pain. I’ve spent many a late night wide awake in bed wondering how far back it goes, this legacy. Did our Neanderthal ancestors have a way to communicate “No, it’s fine—I’m fine—really!” Are these behavioral mechanisms of avoidance and denial intrinsically female? Some research has implied that yes, women are more likely to cope through emotionally focused strategies, whereas men take a more direct, problem-solving kind of approach. Though I would question whether it’s really intrinsic or if it’s just that men haven’t had to devise the kind of coping mechanisms that women have, because their pain is taken seriously and remedied as soon as it becomes apparent.

  In reviewing the work in “The Girl Who Cried Pain” for the first time, years ago in the hospital library, I wondered if maybe I’d been talking about my pain in such a way that it invalidated me. Women tend to contextualize their pain when describing it, whether to a medical professional or a friend: they discuss how it has impacted their ability to work, their day-to-day lives, their relationships. Men typically do not provide this context, instead just stating the facts.

  The next time I saw a doctor, I attempted to do it the manly way, and state my symptoms without providing any emotional context. What was interesting was that the doctor asked for it: Was the pain bad enough to negatively impact my ability to work? I caved and reverted back to “emotional context,” but I wondered: Why did it matter? If I had said no, would he have assumed I could carry on in pain, so long as I could still be a productive member of society? Is a woman in pain not in enough pain until she can’t work, until she can’t take care of her children, until she’s unable to be a satisfying sexual partner?

  The other thing that happened when I tried to engage in a more masculine conversation about pain with a medical professional is that I used a lot more jargon. I worked in a hospital, and my medical terminology was pristine, probably better than most first-year medical students. I didn’t necessarily put it on, but I didn’t hesitate to use words that were highly specific, which I figured a doctor would appreciate. Doctors tend to dislike vagueness. It’s kind of strange: when I enter into conversations with medical professionals outside of the office, they ask where I went to medical school. When I was in the office as a patient, however, I just got asked if I “Googled a lot” before coming in to the office. I was chastised in an “Aren’t you cute?” kind of way that made me feel foolish.

  The irony of being asked about medical school wasn’t lost on me. I’d been out of college several years by then. If I’d never gotten sick—or if I had, at the very least, become well—I would have graduated in 2013. And in fact, I did go to commencement that year. As I watched Rebecca receive her diploma, it occurred to me that even if I did go back to Sarah Lawrence, I’d never be able to return to what it had been when I’d left. Not just because she and my other pals would no longer be there, but because I was not even the faintest remnant of the girl I’d been before.

  When I left
campus and came home, for the third and final time, I suppose I felt some closure. At the very least, I knew that I could only go in one direction: there was nothing that would change history. Short of some profound advancement in quantum physics, I would never be able to go back in time, only forward.

  It might seem counterintuitive, but the first decision I made was to just not go to a doctor at all for the next year or so. I wasn’t even trying to make a statement. I was just too tired, too broke, and had started to feel like I was living in that oft-cited definition of insanity: doing the same thing over and over again and expecting a different result. So instead, I got copies of my entire medical record, from every single hospital I’d ever been treated in, and I got to work.

  If no one in my life, or anywhere else, for that matter, seemed to know much about endometriosis, I’d learn. And then, I’d teach them.

  I GREW UP STRADDLING TWO lives: one online and one offline. The teens I know today seem to have just one life that exists simultaneously in both universes, but for my generation it was a little clunkier. We spent the first half of our childhood without our own computers, and the latter half with groaning dial-up desktops that gave us merely a taste of what was to come. Almost overnight we went through puberty and so did the Internet, all of us emerging on the other side having become more sure of our capabilities, if not confident in our purpose.

  My first blog was a mouthy, first-person lament called cLiCkAbLe CaTasTrOpHe, which existed from the time I was about thirteen years old, up until a few years ago when Xanga wiped old blogs. I didn’t write much about what was happening at the time, but rather, looked ahead to the future. I talked about what I wanted, what I was reaching for. I didn’t have an audience for these musings (that I know of, anyway). But it didn’t matter, it wasn’t about the audience. It was about screaming into the void.