I am gripping at my lower abdomen in a fetal position. My pelvis pulsates and tightens. I imagine someone wringing a rag within me.
I am 15, and an unapologetic Tomboy, no stranger to injuries from skimboarding and flag football. But the pain at this moment is excruciating on another level; it would surpass car accident ailments, split lips, and tattoos in years to come.
My mother attempts to sooth my contorting figure. Befuddled, she dials an emergency nurse hotline listed in a pamphlet. In our pre-Internet, pre-cellphone-obsessed world, this phone number was the only resource we had. My mother begins relaying the nurse’s inquiries to me one-by-one, each meeting a dead end. She clicks on the speakerphone, and a soft voice emerges.
Sweety, are you getting your period?”
My mother gets me into the bathroom and the crimson swirl in the toilet briefly quells my tensions. I yell through the cracked door, “But why does it hurt so bad?”
The speaker crackles with professional wisdom: “Some of us are just unlucky when it comes to our womanhood.”
The scene would replay over and over throughout my adolescence. My cycle arrived irregularly, forcing me to miss school anytime it fell on a weekday. On days it surprised me in class, my dad came to my rescue, tampons and Tylenol in tow. Hot baths. Heating pads. Seven, eight, or nine days of bleeding. Diarrhea. Pregnancy-mimicking bloating. Cramping.
This was all “normal,” they told me. So I put on my overachiever cap, sucked it up and carried on. For fifteen years, I carried on, until I finally learned that, no, this was not normal at all.
Diagnoses for irritable bowel syndrome and dysmenorrhea (a clinical term for “painful menstruation”) came in my early twenties. When I snagged my first serious boyfriend in college, it was time to talk birth control. During my pap exam, I emphasized my agonizing monthly visitor. “The pill should help alleviate the cramps,” ensured my Planned Parenthood gynecologist. And it did—somewhat.
Through coupling, I discovered that sex was not always pleasant: Sometimes it hurt enough to stop. While on the pill, my cramps never matched my teenage throbbings, but the days encapsulating my period remained a battle. I braced myself for whatever category my internal hurricane chose to arrive as.
The web became my secondary textbook: I took to it to help categorize my symptoms. That was the first time I came across the word that would reshift my adult life: endometriosis.
The spotting during sex started at 25. Mortified, self-shamed and now relocated, I made an appointment with a new female gynecologist. Ultrasound results prompted my doctor to diagnosis me with fibroids and prescribe a generic Seasonique birth control regimen. Henceforth, my period would come every 90 days (hurray!), limiting my distressing bouts. I brought up endometriosis, but was assured I was “too young” to act on my instincts. “But do limit the red meat,” she advised. “Some studies show their hormones help fibroids grow.”
My sporadic spotting and spasms made intimacy frightening. I could not imagine having to explain my drippings to a potential partner. Celibacy became my only mental refuge, so I willingly welcomed it for months, even years, at a time. Thankfully, my career’s growth parrelled my sexless tendencies, so I busied myself with its flourishment, occasionally using it as my singlehood scapegoat.
Meanwhile, visits to the gynecologist began rattling my nerves, and failing to bring about any answers or solutions. My fibroids did not appear on my two-year follow-up ultrasound. “Possible human error,” she casually explained. More like misdiagnosis. Another bad doctor down.
Then the “flare up” happened.
It was the summer of 2015. I was 29 and had taken a trip to Europe, which derailed my birth control schedule. My body reacted viciously. Meals were met with discomfort or hours-long bathroom sessions. My weight fluctuated and my stomach bloated beyond my pant size. I spotted almost daily, running through sanitary napkins like toilet paper. Cramps would stop me in my tracks. And the fatigue. The fatigue consumed any daily enthusiasm I had left. By noon, I inexplicably needed to lie down to rest. I ended workouts early. I stopped attending work and social outings. I see-sawed from rebuking my body to feeling completely disconnected from it.
I had been dating someone for six months. My bowel irregularities awoke us both at odd hours. He’d bring me cold water and held me until the pain receded, but we both lost sleep. As I grew more frustrated with myself, he grew more frustrated with me. He’d met me as a vibrant, social butterfly, juggling work, travel, and expectations like a seasoned Cirque performer. The woman before him could barely pry herself from bed. My sex drive dissipated; few positions were pleasurable. Our fights became frequent and personal. We were inches from splitting up: We both missed the same woman.
After a failed pregnancy test had eliminated my only logical explanation, my endometriosis hunch resurfaced. The condition—in which uterine cells grow outside the uterus—matched all of my symptoms: painful menstruation, pain during sex, spotting, the works.
I turned to Barbara*, a family friend who’d been open about her infertility (a common complication with endometriosis) and whom I would later consider one of my “endo angels.” Her only child came via IVF, and her choice to backseat her endometrial symptoms led to an emergency hysterectomy. She raved about the doctor who cared for her during her procedure. He was an expert in these challenging womanly matters, so I made an appointment with him for October. Jane*, my other “endo angel,” encouraged me to take the situation seriously: She too suffered from uncaught endometriosis, resulting in two surgeries and infertility. Like separated twins, they both shared similar “if I knew then what I know now…” sentiments.
I laid there clammy, legs propped open and eyes blankly staring at punctured ceiling panels.We spent little time on small talk.
The pap went swiftly, but when he pried his fingers up my vaginal canal, he immediately shot me a concerned look. “Does that hurt?” he asked. I vehemently nodded. He moved my internal lady bits about; it felt like pressing on a bruise. I began breathing deeply and shifting my hips squeamishly. “We’re almost done, I promise,” he assured.
When he finished, he removed his gloves and leaned against the counter, arms crossed.
“I don’t know anything about your personal life. But I must ask, do you want children?”
“I want the option, at least.”
“If it were up to me, I’d advise to get off the pill and get pregnant in six months. But I don’t know your life situation.”
He “highly suspected” endometriosis and suggested laparoscopic surgery to explore my reproductive organs and remove any potentially displaced endometrial tissue. The procedure would lend me childbearing time and alleviate most symptoms, but not indefinitely. “Just know,” he added, “that even with treatment, the endometriosis will come back”
My boyfriend and I suddenly had to confront life-altering decisions. Did we want children? If so, when and how? If I couldn’t conceive, would he leave me? Would we adopt?
There were silent car rides and many misunderstandings. Reality’s gravity pulled me into a dark, hollow place matched only by my physically weakened state. Endometriosis had confiscated my life.
In comparison to recovery, surgery was a breeze. I woke up in my hospital bed on March 2, 2016, in anesthetic nirvana. For once, I could not feel a thing! Four coagulated incisions lay hidden under my hospital dress.
The post-surgical torments barged in the day after surgery. It felt like I had ridden a jet ski through a tropical storm, allowed a cat to claw my stomach lining, and then been stabbed four times. I was a conscious vegetable: Bending, turning, and reaching were undoable. My limbs had to function isolated from my core. I swelled and bruised. I slept for 10 to 12 hours a day, not including naps. I lost five pounds in a week. That helpless teenage girl emerged, relying on her mother’s daily aid.
During the two weeks after surgery, bowel movements were traumatic events. I’d bite down on a towel and scream until it was over. I forcibly peed; my strained muscles resisted the natural act. “Why the hell did I do this again?” I’d wail.
I got my answer when I went in for my post-surgical check-in. My ob/gyn handed me an iPad loaded with photos from the laparoscopy: There they were, these purplish endometrial adhesions invading naturally pink flesh—my long-awaited validation.
“This one tugged on your rectum. See how tight?” He pointed to the white fibrous tissue begging to snap. “You got lucky. See how close this was to your fallopian tubes and ovaries?” Had the endometrial tissue grown any bigger or an inch to the right, I could have been in an even more dire situation.
I am now three weeks out from surgery. I can drive, but sex, workouts, and travel are still two weeks out, at minimum. Carrying anything over five pounds is forbidden. My revised treatment plan includes my birth control and a short-term aromatase inhibitor prescription, a medication normally used to treat breast cancer. Essentially, I’m delaying the condition’s return by zapping its hormonally powered proteins.
Much of my story remains unwritten and uncertain, but silent suffering is no longer acceptable. The weekend following surgery, I shared a morsel of my experience on my Facebook and Instagram pages, acknowledging that I’d been a hermit lately and finally revealing why. (I also tagged Lena Dunham in my Instagram photo.) Unexpectedly, similar journeys met my comments and inbox. Women came forward in droves, strangers and friends, young and old. I gained more ‘‘endo angels”—a tribe. That same weekend, Lena Dunham ruptured an ovarian cyst.
While recovering, she saw my tagged photo and joined the thread. “Home recuperating and wishing you deepest comfort,” she wrote. “From one laid up endo sis to another.”
*Names have been changed.