People | Health | Bodies

Proof of Mountain

On a long-sought diagnosis, chronic pain, and a trek to Everest Base Camp.

I’m trudging through the Himalayas. It’s day nine of a twelve-day Everest Base Camp trek. The ground is frozen mud. My thighs ache. Ahead is a horizon-stretching field of boulders, and beyond that is base camp.

I woke this morning in a teahouse in Lobuche, with the other eight women in my trekking group and our two Nepali guides, Nirmal and Sudip. Most of the women in my trekking group, who I met nine days ago, are avid hikers. Nirmal and Sudip are literally career hikers. Not me. I’m from mid-Michigan, where the terrain is sidewalk or freeway, flat or flatter. The only peak I’ve ever attempted to summit was Mount Marcy in the Adirondacks, at age eight, when my family went to spread my grandfather’s ashes at the top of his favorite mountain. But I twisted my ankle five hundred yards from the peak and couldn’t go on.

It’s a miracle I’m keeping up now, because my body is a betrayal. And in the mountains—in the Himalayas—you can’t count on much besides your body.

*

When I woke up in the hospital last October, a nurse was holding a paper cup of orange essential oil beneath my nose. “You didn’t want to wake up,” she said. The world was woozy, or I was, and in another section of my brain I noticed I was wearing different underwear than I was put to sleep in.

A question rose to the surface. “Do I have it?” I asked. The word I already knew was there, in that room, but I felt desperate to hear it, from someone else’s mouth.

She nodded. “Endometriosis.”

Endometriosis, a condition in which tissue similar to that which lines the uterus grows outside the uterus, can cause a range of symptoms besides excruciating pain: constipation, diarrhea, fatigue, irregular periods, infertility. I include this definition in part because it’s often gotten wrong; for years, Mayo Clinic and other respected health sources quoted an incorrect and outdated definition. Language is important, because it impacts care—in the case of endometriosis, that’s the care of 176 million people worldwide. Research indicates that an estimated one in ten people with a uterus have endometriosis.

Months later, in my all-women trekking group, gasping for oxygen after a steep ascent outside Namche Bazaar, I learn that another woman in our group has endo. That’s two out of nine. Maybe we’re a statistical oddity, or maybe the scope of a condition that must be surgically diagnosed, and that only affects women, trans men, and nonbinary people, is underestimated by a profession that is still staffed by majority cis men.

*

Through the months postsurgery, postdiagnosis, Everest became a carrot I dangled in front of myself. It was a coping mechanism that helped me through painful pelvic physical therapy, cocktails of pharmaceuticals, and the delayed grief over a diagnosis that, technically, has no cure.

I reserved my spot on the Everest Base Camp trek a couple weeks after my diagnostic surgery, while I was still hurling into toilets from an ironic reaction to a post-surgery anti-nausea patch. Another week after that, I had an Excel spreadsheet for training: weekly runs, cross-training, stair-climbing, weight training, even trips to an altitude-simulation chamber built from a former apple-storage facility near Flint. My family thought I’d lost it. “You’ve never even been a hiker!” my mom said. The unspoken words I heard were: If you weren’t capable of doing something like this before endometriosis, how can you possibly be now?

The idea for the trek was seeded long before my laparoscopic surgery, thanks to some Facebook marketing by an all-women trekking group. While the ads stoked an improbable daydream, they didn’t actually instill much hope in this dream coming true. They were a distraction from daily struggles. Before my surgery, I was underemployed, I blacked out from pain on a regular basis, and I spent my weekdays driving, or being driven, to faraway hospitals. I worked weekends at a memory care facility, where once a month—sometimes more often, depending on my body’s whims—I took suspiciously long bathroom breaks to avoid hemorrhaging blood through my business-casual slacks. I’d return home after two days of work feeling like my life force had been suctioned from me.

My former yoga-teaching, half-marathon-running body had become a two-dimensional imitation of its former self. I’d look at those Facebook ads and wickedly laugh at the algorithm. There was no way I was climbing goddamn Mount Everest.

Then I got that diagnosis.

Articles often cite that it takes a median of eight years to diagnose endometriosis. I’ve always wanted to ask: Eight years from when? (Who do I even ask this of?)

According to the theory of mülleriosis, endometriosis originates in utero, due to a defect in embryonic development of the Müllerian duct. There is an undeniable genetic component: Having a first-degree relative with endometriosis, like a mother or sister, not only raises the likelihood of you having it but also increases risk for more severe symptoms and earlier onset. My mother has endometriosis. Her mother, my grandmother, likely did, too, although she was never formally diagnosed.

So what does “eight years to diagnosis” mean, if the cellular groundwork for my endometriosis was laid before I was born, before my grandmother was even born? Should I have been diagnosed at age eight, when I was watching my grandpa’s ashes drift off Mount Marcy? What about eight years from my first period—which is when endometriosis symptoms tend to emerge?

I guess I’m lucky, because from the point I started treating my diagnosis-hunt like a full-time job, it only took one year.

I know that this time frame was largely possible due to personal advantages: eligibility for my father’s health insurance plan, a healthcare degree that granted me the confidence to stand up to dismissive doctors, and my white skin. Black women are diagnosed with endometriosis about half as often as white women, and people of lower socioeconomic statuses also face challenges with diagnoses. This isn’t because they’re less likely to have endometriosis; it’s because biases in society and within health systems work against them. How many people’s symptoms are brushed off by their doctor as “just a bad period,” or patched over with oral contraceptives like a finger of artificial hormones in a proverbial dam?

I was twenty-four, in the bathroom of a homestay in Ptuj, Slovenia, when I knew something was very wrong. In the toilet was a plume of nearly black blood. After my boyfriend and I returned to England, he insisted I see his family doctor. I was living in England at the time, having just finished grad school there. I was adrift in young adulthood, too sick to moor myself to a career or even a country. But my UK visa was expiring, and soon, so I had to make a decision.

I snagged a cancellation slot and saw the doctor. He asked what was troubling me, and I nervously mentioned my problems with constipation; often I didn’t have bowel movements for days. I’d already tried every over-the-counter solution I could think of.

“Try drinking more water,” the doctor suggested, while staring at his computer screen.

I also mentioned my irregular bleeding. “I was on my period for 121 consecutive days this year.”

The doctor looked up from his computer. “Our seven-minute time slot is over,” he informed me.

If I wanted to discuss another concern, I’d need to schedule a second appointment. The waitlist was eight weeks long.

I knew I had just over a year until I aged out of my father’s health insurance. Maybe I had a chance at getting diagnosed and treated back in America. I packed my suitcase and moved across the ocean.

*

It starts to snow when we reach the boulder field. Big, fluffy flakes that melt on my sunglasses. My cheeks are chapped and numb. I’m exhausted. We’ve been trekking since 6:00 a.m., and I’ve woken up at 4:00 a.m. every day since I got to Nepal. I’m covered in dust and the dried sweat of clothes I haven’t taken off for three days, because being even partially naked in an unheated teahouse at this altitude is preposterous. But I keep walking.

When I step onto my first boulder, I can’t stop laughing, even though the atmospheric oxygen levels are roughly 50 percent of what they are at sea level. Instead of pounding headaches from the altitude, my body has adjusted well. Twice each day, Nirmal takes our spO2, which measures how much oxygen our blood is carrying. At sea level, a normal range is 96 to 99 percent. Up here, Nirmal says he’ll only be concerned if we dip significantly below 75 percent. Most of my group has been hovering in the low 80s for the last few days, but mine is tenaciously stuck to 98 percent. It’s the running joke each time the oximeter is passed to me over dal bhat at lunch and dinner, and it secretly makes me feel superhuman.

I don’t really think my body is superior. But my experience with prescriptions, triple-checking the usage guidelines, and drilling doctors is: Back in Kathmandu, I started taking Diamox, a medication that can prevent altitude sickness, a day before everyone else.

*

When I was searching for a diagnosis, I learned how to talk about my pain. Often in numbers, on a scale of one to ten. Sixes, sevens, sometimes nines, never tens. I knew no doctor would take me seriously if I said ten. Refusing to name my pain a ten might have also been a small act of hope—that this wasn’t the worst—or maybe it was pessimistic, believing that worse pain must be out there, waiting.

I learned how to talk about my pain. Sixes, sevens, sometimes nines, never tens. I knew no doctor would take me seriously if I said ten.

Doctor after doctor dismissed me, so I got more and more specific with my language. I’d describe the pain as a spiny sea urchin that rolled its way through my descending colon. Radiating nerve pain down my left frontal thigh, an aching wave. The molten-hot poker that stabbed from rectum through to navel, then twisted.

Every step on the diagnosis journey was a barrier, daring me to try and pass. One morning I was wearing a paper hospital gown, pooping out a balloon, while a nurse stood quietly outside the door. “I’ll wait here for your privacy,” she said, having inserted the balloon into me five minutes prior.

A week before that, in the same hospital, I lay on a tilt table, attempting to defecate a barium enema solution while no less than five medical residents and a 360-degree X-ray looked on.

I cried in doctors’ parking lots. Many of them. I constantly advocated for myself, petitioned health insurance, and read the fine print on experimental drugs. And I was so tired of fighting.

In the midst of all of this, the seed for Everest Base Camp grew. Not because I wanted to climb a mountain, but because I wanted the old me back. The me without chronic pain, who’d moved across an ocean alone, whose life choices weren’t ruled by a volatile body. Somewhere in my subconscious, I knew that the possibility of returning to my former health was equally as outrageous as climbing to the highest point on earth, or at least the foot of it. But if I could do it, if I could climb to Base Camp, could I have myself back?

*

Everest Base Camp is often described as anticlimactic. It is quite possibly the world’s most accurate representation of the cliché “It’s about the journey, not the destination.”

From the boulder field, I see base camp’s first neon-yellow tent peek above the snow. I’ve known all along to have low expectations for our destination, but here, at nearly 5600 meters, that yellow tent is beautiful to me. My eyes fill and I stare up at the gray sky, the wild clouds, so my tears don’t fall and freeze. Two rivulets of snot are already frozen from my nostrils to my lips.

I hug Nirmal, Sudip, and all the women in my group, smushing their faces. We were strangers nine days ago. Now, we take a group photo in front of a boulder, covered in a tarp that someone spray-painted “EBC.”

Nirmal walks next to me as we start back toward our teahouse for the night. We already spoke about the names for Everest four days ago, when we caught our first glimpse of the peak on a bright morning on the way to Tengboche. But I ask again, because it feels necessary to say the name here, and say it correctly.

“In Nepali, we call her Sagarmartha,” Nirmal says. “In Tibet, she’s Chomolungma.”

“What does that mean?”

“Goddess Mother of the World,” he tells me with a grin.

In this field, on Nepal’s Khumbu Glacier, I’m filled with joy. And it’s not about the place, as majestic as the circle of Himalayan peaks are. It’s about the steps my own body took to get me here.

*

Six months earlier, I had been overjoyed to receive my endometriosis diagnosis. I had not only an answer but also validation that my pain wasn’t just in my head.

But my story wasn’t tied up in a bow in that hospital bed, when the nurse handed me surgical photos of my newly cauterized organs. It wasn’t tied up at the base of Mount Everest, either. Endometriosis is an incurable chronic illness. One 2017 study found that over 60 percent of people with endometriosis require additional surgeries as treatment, at a median time of less than two years from the initial surgery. Another study found that endometriosis recurs in up to 67 percent of patients. An organic time bomb, waiting inside you, for its next life.

The rollercoaster reality of chronic illness is rarely the narrative we’re given. Maybe this is why I yearned for a different truth: that if I climbed this ridiculous mountain, I’d be better. I would get part of myself back. Yet the ending I sought, after an uphill battle of increasingly invasive diagnostic tests and invasive treatment—and after nine days of Himalayan trekking—was only the beginning after all.

Standing at base camp, I didn’t know yet that a few months after returning from Nepal, the familiar sea urchin pain would return. I’d pull over on the freeway outside Cleveland, gripping my side. Less than a year out, I’d be seeking a new surgeon and a more effective type of operation. It would feel, in some ways, like my medical journey was starting again from sea level, although there were already mountains behind me.

The rollercoaster reality of chronic illness is rarely the narrative we’re given. I yearned for a different truth: that if I climbed this mountain, I’d be better. 

When I trained for Everest Base Camp, I was dedicated to the stair-climber. One thing I never practiced, though, was going downhill.

It takes nine days to reach Everest Base Camp from Lukla. You’re given three days to descend. All that distance packed into a third of the time, without the promise of the trip’s climax ahead of you.

The first day of descent, my back gives out. Muscles spasm, grabbing fistfuls of my spine. I borrow 800 mg ibuprofen from a fellow trekker. Sudip ties my backpack over the crown of my head with a scarf, the way porters carry their enormous packs. I feel ridiculous but happy. I’m marching through the hills, my thighs lean and strong. Endo has hurt me more than this full-on back spasm possibly could.

On the second day of our descent, it becomes clear that my too-large hiking boots are now an issue. My toes jam forward. A blister consumes my heel and screeches with each step.

With the lower altitude, though, my body soaks up oxygen like a machine. We pass the treeline, where there are pink rhododendrons that hadn’t yet bloomed along this trail the week before. The air is dusty and smells of yak manure. We cross rickety metal bridges slung across green canyons, rain-faded prayer flags fluttering in the breeze.

On the third and final day, my blisters have expanded with fluid. I can’t stand still. I can only move. My body has done this pain before. With just a half -day of trekking left, I stop at a cliff, muddy from a recent warm rainfall and pock-marked with yak hoofprints. I remove my boots and socks, revealing black toenails, bandages pulling together a blistered mass.

Nirmal sits next to me. “It hurts?” He’s been asking that of all of us these three days. Most of us have some pain, whether it’s a muscle, blister, altitude sickness, or the dreaded Khumbu cough.

“Yes,” I say. We sit and stare at the blue expanse of triangled peaks, the distant stripes of white snow. I was just up there, and now I’m here. It hurts more here. But I’m stronger for it.

Nirmal shoulders his pack as I gingerly re-boot, take the first sharp steps. “This,” he says, gesturing to my feet, my cut shins that I’ve just noticed, “is proof of mountain.”

I stare at him until the realization pours out of me. “Our pain is proof of mountain?”

“Exactly.” He nods and walks ahead.

I look to the stingingly green world around me, the gnarled trees, the horizon of scarred mountains. I think of my own scars: three white crescents, like fingernail clippings, constellated on my stomach. I take a breath.

I keep walking.