I am lying in the fetal position on a twin bed in an attic somewhere in upstate New York. I've taken one and a half Percocets, chewed not swallowed to hasten the effect, and I'm hot and itchy as a result, slipping in and out of cartoonishly gothic dreams — women in white nightgowns appearing at the top of faraway stairs, their waxy faces melting and sliding. Occasionally, there is a tentative knock at the door, a nervous production assistant offering me tea or letting me know that we're moving on to another shot.
I am technically directing an episode of a television show right now. A crew of almost 100 people fills the lower levels of the house we have rented out for the week. But I'm too sick to move, much less command a small cinematic army. So my creative partner Jenni is downstairs, working off the pages of notes I made when I was privately uncomfortable but not yet bedridden. Jenni pops in a few times to feel my head and present me with half an English muffin or a glass of Gatorade. I say thank you, but it doesn't and can't convey this sickening mix of gratitude and humiliation. Because I've been bleeding from my vagina for almost 30 days now, and it's no longer possible to hide my pain, fear, or fatigue. The relief of the pills is that I don't really care — the crushing guilt of slacking off is replaced with cheap nightmares and a dull, thudding sense I ought to be somewhere. At the end of the day, I crawl into a van back to the Holiday Inn, pale and somber and afraid of who will see me.
From the first time I got my period, it didn't feel right. The stomachaches began quickly and were more severe than the mild-irritant cramps seemed to be for the blonde women in pink-hued Midol commercials. Those might as well have been ads for yogurt or the ocean, that's how little they conveyed my experience of menstruating. During the worst of it, my father brought me to the ER, where they prodded my appendix and suggested it might be food poisoning and that we should go home and wait it out. My mother placed a pillow under my lower back, and I moaned in the guest room, where no one could hear me, my legs spread like a woman in labor.
Throughout high school, I had irregular periods and hideous mood swings, but these were hard to uncouple from the looping thoughts of doom and crippling anxiety that had been a part of my life since early childhood, when I began to struggle with obsessive compulsive disorder. It was also hard for me to imagine that the same girl who counted her every breath and blink, who had to masturbate eight times a day or not at all, who was convinced she had leukemia because she was dizzy when she sat up too fast, was now suffering from an entirely separate medical condition. Even my eternally supportive and tolerant parents seemed dubious. And who could blame them? It was impossible for me to take my own pain seriously, so how could anyone else?
When I was 16, the sporty, tan gynecologist asked no more than five questions before putting me on birth control. Easily swayed by warning labels and lists of potential side effects, I swore the pill worsened my anxiety. The stomachaches continued, though I never considered them to be linked to my period but rather separate and distinct viruses of indeterminate origin. I was also on a high dose of antidepressants to combat OCD (cool trivia fact: OCD patients often need much larger amounts of medication than depression sufferers might in order to find relief). This dosage made me so tired that I usually lay down in the nurse's office from noon until she woke me up at four to send me home. Whatever the cause of the pain and fatigue, I missed 62 English classes in tenth grade and was crowned the grade's sickest girl. Lindsay and Sarah both decided not to invite me to their birthday parties on the off chance I wouldn't show. I three-way-called them, sobbing but unable to defend myself beyond repeating the words "I don't lie about being sick."
I vowed that college would be different. According to both my mom's gay friends and the teen movies that were my friends, college was the place to redefine your identity. Textbook losers could become queen bees. Jocks could turn into ravers, and hair could be bleached until it turned to straw — and it was. And I could be the person who went with the flow, staying out until four in the morning at the arty seniors' house with a cigarette in one hand, sporting chipped red nails and a beaded vintage dress worthy of Liza Minnelli. I acted robust and therefore became so, going everywhere and tasting everything and even attending a psychedelic-prom-themed party with a sinus infection (in the Polaroids, my face is red and chapped, but I am beaming).
But it didn't last long. In January, I felt the craggy head of my first wisdom tooth emerge, and a week after its removal, it was still swollen, and my jaw was locked. A gruff Cleveland dentist determined I was suffering from "dry socket" and said he'd seen worse in Vietnam; he stuffed the wound with cotton and sent me home to recover. But I didn't, and by the next night I was wandering to the dormitory bathroom to vomit, my body flopping into a horseshoe around the base of the toilet. My partner in crime Audrey picked me up, and, despite weighing only 98 pounds, she practically carried me to the ER, where they diagnosed me with both a bacterial infection and mononucleosis.
I called my parents, who demanded I come home.
"No," I croaked. "I'm happy here."
But by the next day, I could no longer swallow, and fellow 19-year-olds don't tend to make the most considerate or consistent nurses, so I surrendered. My mother booked the flight, and at the Cleveland airport, a security guard saw my pale face and offered me wheelchair assistance, which I wordlessly accepted.
Back home in my bedroom, I lay perfectly still and stared at the crack in the baby-pink ceiling. My father entered and laid a cool hand on my forehead.
"You're pretty bummed out, aren't you, doll?"
I was too tired to answer, too tired to move my face, and a single tear rolled down my paralyzed cheek like I was Beth in Little Women. Later that week, I got my period and couldn't tell where one kind of pain began and the other ended.
The mono symptoms faded, but what remained was pure exhaustion, syrupy and unavoidable. All my friends seemed tired too — after all, for many of us, college is one long party with Adderall as the guest of honor — but I knew deep down my version was different. I slept like I'd been clubbed in the head, and the rest of the time I felt a painful heaviness that I accepted as a continuing side effect of my OCD medication. Maybe it was just a side effect of being me. I was on birth control again, this time for the pregnancy-prevention reasons, though I often forgot to take it, doubling up the next day. Occasionally I would get one of those high-school stomachaches, lying down on the quad until a friend could come and help me back to bed. Through some act of a G-d I do not pray to, I graduated on time, but I slept through most of the ceremony.
As I began to pursue my career in earnest, it became immediately clear to me that my innate physical sensitivity would not be an asset. Days on independent-film sets are long and grueling and often involve the hauling of heavy equipment in extreme temperatures. And I was working with mostly boys, boys who ate like goats and stayed up all night drinking and screaming about the respective merits of John Cassavetes and Nicholas Ray until a few hours before they were due back at work. Already self-conscious about imposing my vision on a group of men and asking for their help in executing it, I hid my pain as best I could. On the set of my film Tiny Furniture, I spent my first lunch break hiding on the toilet, begging the lone female crew member to bring me Midol, heavy barbiturates, or any combination thereof.
When I got the opportunity to make Girls, I knew with perfect certainty I was not going to let anything stop me: not my anxiety, which occasionally led to terrifying dissociative episodes when unattended to; not the extra 30 pounds my mom's nutritionist had determined I was hauling around; and not my often perilous physical equilibrium. In an effort to finish writing the show's pilot quickly and lose my appetite, I took up smoking — badly, often lighting the filter instead of the tip — and drank several espressos a day. A week into this regimen, I began to feel a dull pain in my lower back, which became unmanageable around midnight. The next morning, I wandered into the living room in only a T-shirt.
"You okay, doll?" my dad asked. Tears came unbidden as I gripped my pelvis and muttered, "Something's really wrong inside me." Without any scientific understanding of my own insides, I pictured a red rim around every organ, a fiery line slashing through my uterus and bladder and out of me onto the floor like a vag-centric Keith Haring painting.
I was taken to the ER, where they put a morphine drip in my arm and I drifted into a tropical vacation of the mind. I changed into paper underpants so a handsome Indian intern and his squat Italian companion could do an ultrasound, slathering my stomach in cold blue jelly. I tried to talk, to explain what I had been feeling and ways I had felt it before, but they whispered over me, consulting an empty chart. They diagnosed me with colitis and sent me home with a handful of Percocet and an appointment for a colonoscopy. When Jenni called to check in, I heard my mother pick up and bark: "My daughter is 24, and she needs a colonoscopy. Welcome to Hollywood."
I got the procedure on a brisk October day, then returned to the newly minted Girls production office for a location scout. My stomach was full of the sickening lemony liquid they ask you to drink to "clear your system," and I couldn't stop making ill-advised anal-rape jokes, covering up a fear so profound as to be unspeakable: that my body would betray me, hold me back, and prevent me from pursuing a life of substance. That I had no control.
I got through filming our pilot with nothing more than laryngitis, a small triumph for me, and the colonoscopy verdict was in: my colon was in perfect health. But that wasn't comforting. It simply confirmed what I thought I knew, that I was crazy and just waiting for people to find out. If my pain had no tangible source, that just meant my mind was more powerful than I was and it didn't want me to be happy, ever. I saw myself divided like a black-and-white cookie into neat halves: one bright and ambitious, the other destined to wind up strapped to a gurney and moaning for pain meds. I had lost all trust in or connection to my own body. I was a floating head.
I can tell you the moment my life changed. I was in Los Angeles after we wrapped our first season of Girls, with yet another immaculately conceived UTI, and Jenni sent me over to Randy Harris, MD, the man who had delivered both her children; he was, she assured me, "the menschiest of mensches." I sat down on the table and he began a thorough exam (that's right, ladies, you know what I mean by thorough, and it includes light anal exploration).
"I just have a UTI, I need antibiotics," I told him. "I'm fine otherwise."
He said that, with a new patient, he needed to do a full checkup, and he began asking me questions about my medical history. He teased the story out of me, and I saw his eyes flicker as he began to make clear connections: between the irregular periods and the crippling stomach pain, the chronic exhaustion and the intense shifts in mood around my period. The urinary-tract pain even when tests indicated nothing was wrong. The weight fluctuations. The lack of answers.
"Let me guess," he said. "You've had your appendix poked at a lot." I laughed with relief before I even heard him utter the word endometriosis. He sent me home with a prescription for a new kind of birth control, better equipped to suppress my symptoms, and a possible name for my pain.
Simply put, endometriosis is when the tissue that lines the uterus grows in other places in the body. This usually means on the ovaries, in the abdominal cavity, and on the bladder and major organs like the liver and kidneys (though, in rare cases, the errant tissue has been found as far away as the brain). The menstrual cycle causes the tissue to swell and bleed, causing pain, fatigue, nausea, gastrointestinal problems, and a host of other physical symptoms. Endometriosis can also be a source of infertility. While endometriosis affects one out of every ten women, only a fraction of those cases will ever be diagnosed. Many will be dismissed as having mere menstrual pain or, worse yet, some modern version of hysteria.
Over the next three years, I remained on the pill. Taking a low-dose pill on a regular schedule eased my symptoms immediately and tremendously, but a few days of every Girls season, I would come into work with that telltale stomach pain, nausea, and inability to move a muscle. The feeling of stopping a crew of 100 people from doing their jobs is far more stressful than missing Intro to Greek Drama class at a liberal-arts college, but I felt the same sense of hot shame. The kind of shame you feel as someone with an anxiety disorder that plays tricks on them. The kind of shame you feel as a woman showing weakness.
Randy continued to treat me, but the pain became more frequent, and my sex life started to suffer. The misplaced endometrial tissue had caused swelling and scarring that made intercourse feel way too much like the first time. And if you have a lovely and sensitive partner, making you feel like an anxious virgin biweekly does not turn him on.
After we determined the cost to my daily life was too great, Randy decided to perform a laparoscopic surgery, which is the only way to definitively diagnose endometriosis. Throughout my working life, adrenaline has always carried me through the moments when illness truly wasn't an option — oh, hello, diarrhea before David Letterman. I'm sure that's the case for many women — mothers, executives, Rockettes. I ignored the messages my body was sending to me in favor of productivity, attempting to prove my resilience. But that was getting harder, and soon I found myself in a hotel room in Amsterdam, knees pulled to my chest, unable to continue my book tour. I flew home flat on my back, on more painkillers — these ones given to me by a Danish semi-stranger — and a pilot told me I was "beautiful for a horizontal girl" and offered me his private email, which was essentially: firstname.lastname@example.org.
The surgery was scheduled for November 17, and I came to think of it as salvation, the beginning of the rest of my life. But I was also nagged by the fear that he would look inside me and find nothing, only smooth, watermelon-pink skin and incontrovertible evidence that I was absolutely fucking bonkers.
Jenni came with me to my surgery. She held my hand as they administered the Valium and then something a little stronger, and she took an iPhone video of me as I babbled incoherently about "a picnic for dogs where the dress code is burlap."
As they wheeled me away, I looked up at her and asked, "What if they find nothing?"
I woke up what felt like four seconds later. Jenni was there, and so was my boy friend.
"It was a real mess in there!" Jenni exclaimed, knowing these were the best words I would ever hear. "Jack almost fainted looking at the pictures!"
Randy explained that they had found "stage two disease" all over my abdominal walls, bladder, liver, and appendix, which they had removed and sent to be biopsied. I was so elated by the news that I barely felt the sting when the nurse yanked my catheter out in one swift motion and told me I couldn't eat for another 24 hours.
The first day, I felt exactly as Randy had predicted I would: "Like Mohammed Ali punched ya in the tummy!" But two days after the surgery, I was better than I had been in ten years. The illness, nausea, heaviness, and fatigue were replaced by an alien absence of sensation. Is this what it's like to have a body? I wondered. A regular body?
The next week, Randy sat me down and explained what he had found: enough endometrial tissue and scarring to cause significant pain, especially during sex or exercise, as well as an appendix that showed signs of long-term chronic infection. "You must have felt pretty crummy," he said, patting my hand in a way that managed to be both utterly sterile and convey the deepest sympathy. Randy has been performing these surgeries since long before they were popular, back when he was considered crazy for not simply removing a stressed lady's uterus and moving on. I could tell I wasn't the only woman he had seen through the discovery of her own sanity. It's a sad and beautiful moment when you realize just how much you have let yourself endure.
Long-term chronic infection. I carried the words around with me like an award statuette, flashing them at every friend who had ever complained about my phantom illness and general inability to party like a rock star. I apologized for all the weddings and birthdays I had missed, but it wasn't really an apology: it was a battle cry. I no longer felt like a weakling. I felt like a survivor. I hit the gym with an enthusiasm I thought could be summoned only by reality TV stars. I took two plane flights in a day and drank wine and ran around the yard with my godchildren. I actually suggested sex. I was alive as fuck.
I wish I could say that was the end of my "health journey." After six painless months, I began to experience a recurrence of symptoms, that aforementioned nonstop vaginal bleeding in upstate New York, and migraines that kept me in bed at inconvenient hours. I remained engaged at work, but the effort was breathtaking at times. I took to Instagramming cheery images as a diversion tactic. If I could look well, than maybe I was well.
Vaginal ultrasounds became more routine than aerobics classes, and between her very accurate reviews of Broadway theater, the ultrasound tech (this one warmed her blue goo and referred to it as "hot sauce") told me that pregnancy usually helps women with endo. Though I want children in the not-too-distant future, I was immediately allergic to the idea of a baby as a painkiller. I want to welcome a child into a world I have already aced.
Out of tangible options, I started Lupron: monthly injections that shut down the production of estrogen and therefore the proliferation of endometrial cells where they shouldn't be. It's a temporary menopause of sorts, and while it solves certain issues, others pop up like whack-a-moles. I no longer felt a fist was unfurling in my uterus, but I did have zero ability to regulate my temperature, achy hip joints, and the emotional sensitivity of a drunk girl at prom. Life is a series of trade-offs, I suppose. I can't yet tell you if this has changed my life. I can tell you that nothing seals a friendship like a big old shot administered in your ass by your best friend in a Tokyo hotel room. When my estrogen dropped, so did my mood, to which Jenni half-joked, in a play on "War Is Over": "You can get through this. Estrogen is high if you want it." I laughed, which, cheesy as it sounds, is the best of all the medicine.
Endometriosis is not life-threatening. It doesn't manifest externally very often; the symptoms just look like a pair of sweatpants and a Charlize Theron–in–Monster–level grimace. I know I'm lucky in the grand health scheme, but I also know that I am one of many women who grasp for a sense of consistent well-being, fight against the betrayals of their bodies, and who are often met with skepticism by doctors trained to view painful periods as the lot of women who should learn to grin and bear it. I am lucky to be insured. I am lucky to have found Randy. I am lucky to be surrounded by love and to be able to control many aspects of my work schedule. But one night, as I searched "Lupron side effects" online — never the best idea — I came across the blog of a woman struggling with endometriosis. As she described her course of treatment and the resulting challenges, she asked, "Who would choose to be a woman? Seriously, it's one terrible thing after another!" I slammed my computer shut. I'd had enough.
I would choose to be a woman. Any day, any way, any time. Being a woman is the best thing that ever happened to me. But I also hope for a future in which the pain of teenage girls is fully investigated, taken as seriously as a broken leg. I hope for a world where illness isn't equated with weakness, where mental-health issues do not discount physical ones, because, guess what, we are complex beings. All along the way, a massive fear of mine was "being discovered," that someone would decide I wasn't strong enough for my work or my life because of what I dealt with physically and emotionally. But I am strong because of what I've dealt with. I am oddly fearless for a wimp with no upper-body strength. And I am no longer scared of my body. In fact, I listen to it when it speaks. I have no choice but to respect what it tells me, to respect the strength of its voice and the truth of my own. Estrogen is high if you want it. And baby, I want it bad.
Lena Dunham was stunned to realize just how well-versed she is in the lingo of painkillers.