I feel exhausted and gutted, like a doe that’s finally been caught after a long chase. I want to crawl between the sheet by nine o’clock. Words are lost before they get to my tongue—thanks to hormonal effects on the temporal-lobe declarative memory-system of my brain—and objects are not quite what they appear. I don’t mean that I’m hallucinating, but it’s as if my mind takes a picture and labels it wrongly, then feeds my mouth the incorrect title.
For example, during a drive with my family, what I think is a small chicken darts into the grasses on the side of the road. “Oh, look at that,” I say. A tiny Araucana, I almost announce. When my husband asks what I’m pointing to, I stumble over the words, “It was just a cardinal.”
I’ve had my period three times in eight weeks, for longer than five days each time. If this keeps up, my doctor warns, I will be admitted to hospital. I’m taking an estrogen receptor balancer, which should help control the bleeding. My other options are a DNC followed by a uterine ablation, synthetic hormone tablets or, worse, Lupron (leuprorelin)injections, the side-effects of which are more intolerable than this anemia. An extremely low iron count is just one indicator of my condition, one facet of this game in which I’ve been an unwilling participant since childhood.
At age eight I was often mistaken for a boy. I had pixie-short hair, was stick-thin, and already over five feet tall. “You’d make a perfect flapper,” my great aunts enthused, hoping to cheer me when I neared teenagehood. But this was the early era of silicon implants and aerobics, and my figure was incompatible with society’s idea of normal: Christie Brinkley in Sports Illustrated, posted inside every boy’s locker door.
Just before my fifteenth birthday—some three years later than most of my peers—menstruation began with a startling adult fervor. Each month’s episode was heavy and painful, and I tottered my way to the school bus in a dizzy haze. Instead of hair gel and aspirin, my medicine cabinet housed half-empty bottles of pamabrom, mepyramine, ketoprophen, mefenamic acid—all tested, none reliable. The painful leg cramps—“growing pains”—that used to wake me in early childhood still continued, and my figure was nearly skeletal. I was often exhausted, run-down, infested with colds, a consumptive characterfrom another era.
Coming of age in a suburban expanse of cookie-cutter tract houses and an intense fear of “different” hammered into my peers only highlighted what I was desperate to keep secret. A Long Island girl’s teen years were supposed to be laced with kissing parties and football games, not an unpredictable drama of nausea, pain, and blood-soaked sheets. Of shy, mousy tendencies like wearing tweed skirts and reading Poe under a tree instead of playing Lacrosse.
Various pediatricians approached me with a mix of skepticism and scorn, consistently announcing that all was “normal”: a term used to explain everything from the healthy to the outlandishly inexplicable. “You need to get her to eat more,” they would say to my family, within my earshot. The thought was that I was anorexic from nerves, and that somehow this was the correct way to handle it.
I was raised in a feminist age where shame about the body was not supposed to be part of my modern consciousness. Yet societal openness hadn’t shelved my personal humiliation, nor had it quashed my doctors’ penchant for blaming my symptoms on my own mindset. Truth be told, the social movement of the 1970’s hadn’t really taken care of the scrutiny under which all women still lived: under glass, like specimens that needed constant judging and tinkering.
One day in my senior year of high school, after vomiting from period cramps, I went to the nurse’s office. She reluctantly offered me the cot, then called my father and sent me home. What I didn’t know was that she told him I was being sent home because I was pregnant and/or “promiscuous.” My father, besides himself, asked me, “Are you promiscuous?” as if the word was an actual diagnosis. This might have been funny, considering I’d only ever had one boyfriend, except it felt more like a scene out of one of my favorite 19th Century novels. This is what we still do, I thought even then. When we are met with the unknown, coupled with the female body, we cry loose morals and criminal insanity.
The incident was a mere shadow of what was to come. Because by the time I was in my mid-twenties, most people viewed me as a frail, “artsy,” over-sensitive, acerbically witty girl who was often ill and probably more than a little crazy.
After college I worked as a journalist, popping Xanax to get through interviews, a practice that kept my accelerating anxiety attacks only slightly at bay. I took an hour preparing to leave the house (do I have my pen and notes, my compazine and fiorinal?). One day I heard my editor on the phone, arranging for a subject to meet me. He said, “What does she look like? You can’t miss her: Dark eyes, real thin. She has that heroin chic thing happening.”
My house became my sanctuary from the chaos that was Me In The World, and it felt terrifying to consider leaving it. My bookshelves were crammed with Gothic novels, and I immersed myself in them: debauched women burying their stillborns under druidic henges; cursed castles where the undead lived amongst the barely-living. Biographies of accomplished women who were labeled unstable also became increasingly intriguing to me. Claudette Colbert, Vivian Eliot, Marilyn Monroe, and Mary Tudor had all battled severe menstrual symptoms, miscarriages, “false pregnancies,” unexplained tumors, and depression. All were severely ostracized by even their own families.
It was at this point that I began to wonder if my life-long fascination with a 19th Century ideal of beauty, and women who were labeled societal outcasts, held clues that might solve my own illness.
By age thirty-one, eating was a torture ending in something akin to stomach flu. My Regency-style wedding dress had to be made for me, because, though I was 5’8” tall, my torso was as narrow as an eleven-year-old girl’s. Naturopaths and acupuncturists had thrown their hands up at me. I spent most days bleeding profusely, and vomiting from Vicodin. Though I tried, I could not get pregnant. My condition had grown to such an extent that both Western and Eastern doctors finally agreed it could be an actual condition.
Chlorosis, Hysteria, Moral Insanity, Female Morbidity: the Victorians had as many inaccurate names for it as they could invent, and committed countless women afflicted with these so-called conditions to asylums. The seven modern-day doctors I saw in two years had their own diagnoses: Chrome’s disease, Colitis, Panic Disorder, common migraine syndrome, nervous exhaustion, Dysmenorrhea, Irritable Bowel Syndrome, duodenal ulcer, follicular cysts, and general infertility.
In a magical moment of consensus, an OBGYN, and a fertility specialist, wanted to perform a laperoscopic procedure. The exploratory excursion, they said, might involve the removal of the cyst and a few microscopic clogs in my fallopian tubes. Instead, the brief procedure turned into a three-hour surgery. I was told later that a team of medical students stood bug-eyed in the huge theatre. The students couldn’t believe their luck. The two surgeons couldn’t believe what they saw.
Endometrial implantations had to be cauterized and cut from my exterior uterine walls, fallopian tubes, ovaries, bladder, stomach, small and large intestines, taking healthy tissue from each of those organs with it. Most of my left ovary was removed along with the orange-sized cyst that rendered it useless; and endometrial cells that could not be removed had to be left to fate. When I awoke, the primary surgeon leaned over, her face aghast and accusatory, and said, “You have stage-4 endometriosis. You must have had it for years. You probably won’t have children, now.”
This is a moment that—even coming out of the haze of anesthesia—I will always remember. Not because of the unfortunate news of my fertility, but because once again, even after this surgeon had seen with her own eyes what had caused years of suffering, there was a declaration of negativity that pointed at me. On my follow-up visit, the same doctor told me she didn’t actually want me to try and conceive right away. “Being pregnant comes with major body changes and weight gain, and for someone like you, I’d be worried about how your body image would affect you,” she said. When asked to clarify she mentioned my anorexia. I said, “You mean my anorexia that was caused by all those lesions you just cut out of my body?”
Endometriosis is a condition wherein cells like those in the uterus lining are found elsewhere in the body. These cells are still affected by hormone changes and may even cause hormonal imbalances. They grow, then break down and bleed. Unlike during a menstrual course, the cells have no way of leaving the body, and so remain, multiply, and form adhesions. Endometrial tissue can be found almost anywhere in the human body (in rare cases, in the brain and lungs), and can form large, blood-filled cysts. According to the World Endometriosis Research Foundation, there are an estimated 170 million sufferers wide. Women negotiate this prickly and humiliating landscape of ill health with little more than a nod from anyone, and with varying symptoms.
Over the last decade, there is better research and more communication within the medical community. Oxford University and M.I.T. have notably launched schools of research devoted almost entirely to endometriosis, which both institutions currently classify as an auto-immune disease. I have found doctors who are willing to take on the arduous task of managing my disease with compassion, though many women—as can be seen on countless internet forums—have not. My own practitioners missed more than one recurrence, and are occasionally stumped as to what to do with my various symptoms.
This is because endometriosis is one of the most mysterious medical conditions, manifesting in symptoms that are severe, to mild, to unnoticeable. A woman with moderate-to-severe symptoms suffers an average of eight years before being properly diagnosed. The disease itself can manifest at a girl’s first menstruation cycle, or—more puzzlingly—before it. Women with endometriosis suffer a 38% greater loss of work productivity than those without endometriosis, due to pain. Some with the disease have no pain at all, but find they cannot conceive when they try to have children. Women with endometriosis who do conceive have a higher rate of miscarriage and ectopic pregnancies.
I am lucky as far as fertility goes. While I’ve had three miscarriages, I’m also, without in-vitro fertilization, the biological mother of two. It was thought until recently that endometriosis went into remission after pregnancy. Former theories also said menopause or hysterectomy was a cure. But endometriosis has no cure. Now, it seems, all I have to look forward to is a tapering off in the growth of new cells, and an increased risk of certain cancers.
I’ve developed a kind of internal radar, an Endometrial Sixth Sense: zeroing in on a friend who gets her period for more than a week, or the cousin who’s been put on anti-seizure medication for migraines, or my own daughter’s frequent leg pains. A friend calls me “Dr. Google.” Like so many, I rely on information from medical websites, published research papers, and internet forums.
With such a fluctuating list of symptoms, and diverse theories of origin, those of us who live through this feel like characters in a House episode that never ends. Almost thirty years into my symptoms, I still have migraines, acne and skin discolorations, and hormone-induced panic attacks that take hold of me for no discernable reason, often in the middle of a sound night’s sleep. Sometimes, I have searing, ulcer-like pain in my abdomen, as if I’ve swallowed glass. After injections of Lurpon (a gonadotrophin-releasing hormone targeting pituitary receptors), I gained twenty-five pounds above a normal weight, permanently altering my body shape and my thyroid levels. Four years ago, 30 non-endometrial, rupturing cysts caused an E.R. resident to schedule an appendectomy. After reading my chart more carefully, a senior doctor burst into my room to cancel the procedure and order a sonogram instead. More recently, a non-endometrial cyst lodged itself in the lining of my uterus while, at the same time, a fibroid grew outside the lining of my uterus, neither of which are said to be the cause of 14 months of severe bleeding, and a suddenly low thyroid count.
When I asked one of my doctors whether it’s reasonable to assume that endometriosis has contributed to these anomalies, she was silent. I was treading on the thin ice that divides what can be seen and what has to be guessed at, a territory I’m certain physicians categorically dislike.
“That, and you have a hypochondriac code on your medical charts,” a friend who’s in medical billing tells me. I think she’s kidding until she explains the code comes across her desk every day, notably with people who see many different doctors over a period of years for “mysterious” symptoms.
The novelist Hilary Mantel, who suffers with the disease, said, “It’s very difficult for me not to regard my body as my enemy. But it’s the only one I’ve got.”
I think about that a lot. And I tell myself that I am not the demoralized, consumptive little girl with the sallow face and stick-thin figure anymore. I tell myself: you are the gutsy female apothecary who insists on not riding side-saddle, galloping to meet the next symptom head-on. If only I had more than a sack of herbs at my side.