So It Goes: A Journey of Pain, Isolation and Hope

I’m 26 years old when I wake in the middle of the night to a knife-sharp pain radiating from both sides of my lower stomach, down my legs, and around my back. I can feel my heartbeat in my head as white lights pop in front of my eyes and I start to lose vision. I try to get up, thinking I’m going to be sick, but the floor tilts as my head spins. I drop down to the floor as another excruciating wave of pain wrecks me. Sweating through my clothes, I writhe on the ground.

“Help!” I call out weakly, even though I know I live alone in a small apartment. My family is hours away and my friends are fast asleep in various suburbs.

Headed to the ER, alone in my endo pain

I can tell I’m bleeding heavily. My hand shakes as I force a cracker down my throat from the bag I always keep beside my bed for nights like these. Cracker. Two Advil. Sip of water. Two Tylenol. Sip of water.

I’m having trouble breathing. I reach for my cell phone, but it clatters to the floor. As I bend to pick it up, something feels like it rips inside me, and that is when I decide to go to the emergency room.

Nobody I know would be up at this hour except possibly the boy I’ve been dating for a few weeks.

“Are you free right now?”

It’s 1 AM.

“I’m with friends. Whatcha up to?”

Oh nothing much, just got my period and wondering if you can carry me to the ER?

I put my phone down to spare myself the embarrassment of even beginning to try to explain what is going on.

My legs shake with my weight, so walking is out of the question. I crawl down the hall of my quiet apartment building, praying I don’t meet anyone in the hall. I slump against the elevator door as it takes me to the parking garage. My knees burn as I crawl over the cement to my car. I hunch forward to drive the 10 minutes to the hospital, searing pain traveling from my stomach to my toes, praying I don’t pass out.

Dismissed and discouraged again

I shake and cry in the ER, even though this is a drill I know very well.

“Back again? Seems to happen at night, huh?” The ultrasound tech recognizes me. I’m there at least every other month at the same time.

After hours of painful exams and some pills, I’m released. As always, my exams show nothing. “Probably endometriosis,” I hear for the millionth time. I get home feeling swollen and dismissed.

And so it goes, for years and years.

Debilitated and isolated by endometriosis

I become so anemic I sometimes have trouble standing. I pass out at work, at a movie theater, and, most frighteningly, on the side of the freeway. I stop wanting to leave the house because I can’t trust my body to get me from point A to point B without breaking down. I try everything. No matter what I do, how far I get, how strong I think I am, each month, I am right back to writhing in blinding pain on my floor like clockwork.

I endure the awkwardness of explaining to my male boss why I miss so much work. I try to find the right words to explain to friends why I can’t make it to a party because I have my period. Why does that matter, I imagine they will say. Just take some Midol. I stop making plans ahead of time because I don’t trust that I won’t have to cancel at the last minute. I can almost hear the judgments I imagine people make of me – she’s faking it, she’s being overdramatic, it’s all in her head.

While friends have children, I watch in pain

I watch my friends get married and have babies. I process the devastation of having a romantic partner who wants biological children, knowing that is something my body probably can’t handle. I scroll social media and see smiling people on hikes that I don’t dare go on for fear of passing out.

My stomach swells each month, so I buy a new wardrobe of loose clothing. I hold my head high as someone makes a passing comment on my weight fluctuations. I try to fight through the heaviness I feel in my body all the time: the constant dread of the next month, knowing what kind of pain awaits me; the exhaustion of trying to hide all of it, knowing that it’s a social faux pas to share what is going on, that you risk grossing people out. I lose friends and watch peers pass me by and stay quiet, because how could I ever begin to explain? How could they ever begin to understand? You aren’t supposed to talk about periods, and you aren’t supposed to complain about pain. You are just supposed to carry on.

Pending surgery gives me hope

I’m finally getting excision surgery with a specialist. It’s taken me years to find the right doctor (There are only a few surgeons who do what he does.), save for the surgery (It isn’t covered by insurance.), and get over my medical anxiety and agoraphobia enough to drive the 6 hours for appointments I’ve waited months for. My doctor’s kindness and belief in my pain nearly brought me to tears, and I’m so grateful for what he does for people with endometriosis. I know I am very privileged to find a wonderful doctor and afford this kind of care.

Sharing our stories can help

Everyone is fighting some battle we never see. I’ve had to give up a lot of dreams, but having this surgery is a win to be proud of. The silence of carrying around pain and being embarrassed to explain it is too heavy. I’ve recently started opening up about my surgery and I’m astonished to hear how so many women have had the same struggles. Endometriosis is common, and we don’t talk about it enough. By not sharing our stories, women end up isolated and uninformed. Time to change that.