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.
If you weren’t capable of doing something like this before endometriosis, how can you possibly be now?
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?)
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.
Sarah Bence is a freelance writer and occupational therapist, particularly fascinated with the intersections of travel and health. Her writing has been published in Business Insider, Lonely Planet, Roadtrippers, and others. She blogs at www.endlessdistances.com.