I Spent Years Begging Doctors To Help Me. I Wasn't Prepared For What Happened When They Finally Did.
When I told my family and friends about my recent hysterectomy, their response was unanimous: “You should have done it sooner!”
The truth is, I tried.
It’s not a coincidence that the word “patient” in medicine has its root in the Latin verb “to bear.” It seems like a patient must endure their circumstances as long and as stoically as they possibly can, because health care’s answer is often to wait and see. As a teen with mysterious intestinal issues, I’d repeatedly be sent home from the ER with nothing but an open invitation to return — see if it gets better, come back if it gets worse.
Spoiler alert: My condition became unbearable.
I was 24 when I started begging gynecologists for surgery. I’d just completed my master’s in Europe and was beginning an exciting Ph.D. program. I’d been awarded more scholarships than I could even accept. My brain was buzzing with ideas and the world was my oyster ... except I couldn’t use the bathroom like most people my age, couldn’t get through a morning without vomiting after my shower, couldn’t get myself out of bed during my period or exist without the ache weighing in my center. I’d bleed so much that I was chronically low on hemoglobin and passing out on the couch instead of attending classes or conferences. Medications only morphed the agony into an even more intolerable reality by making me forget how to think and speak and feel.
The onus was put on me to connect the dots between my digestive dysfunctions, painful periods, liver tenderness, bladder pain and sciatica. It seemed like endometriosis to me, and maybe adenomyosis, a condition that involves the uterine muscle, too. The challenge was to convince doctors to name the offender — let alone treat it.
“Why do you need to wear a diagnosis like a label on your forehead?” one of them asked me. “Everything will resolve itself once you get pregnant, you’ll see!”
My husband and I didn’t want to get pregnant. I didn’t see myself ever having kids. I just wanted my life back. But every doctor I sat across from left me feeling like my life was secondary to motherhood.
At 26, I started experiencing hot flashes and mood swings so intense that I suspected I’d somehow beaten my mom to menopause. My doctor chuckled at my plea to check my hormone levels and reluctantly ordered the tests. When the results revealed I was indeed at near-zero in ovarian function, my first reaction was not grief, but relief. Maybe now, they would take care of it — of me.
And yet, despite babies not being any more on my radar than menopause, I was somehow convinced to consent to a high-dose IVF cycle to freeze whatever eggs my measly ovaries could produce, “in case I changed my mind one day.”
It was no surprise that the hormones made the illness surge, nor that the eggs were unviable.
During what should have been my prime years on the brink of a flourishing career, my identity was rocked to its core. I became meek, unsociable and constantly bent over my belly. I dropped classes, asked for extensions, called in sick. This illness-not-worth-naming created gaps in my CV and grounded my travels. It stole space in my love story with my husband. It took all my willpower to finish my Ph.D. and stand up for three whole hours during my doctoral defense without leaning my body on the podium. After people congratulated me, they immediately asked, “So what’s next?” What position did I have lined up? When was I having a baby?
I stopped counting the gynecologists, gastroenterologists, ER doctors and general practitioners who dead-ended my pursuit for relief. I couldn’t even count them all now if I tried. Each time I dared to hope an appointment would unfold differently, it would follow the same maddening script, and I’d end up hanging by an even looser string.
The first surgeon who said yes to me lived six hours away. He came into my life as a fluke when a friend introduced us. He cut out all the endometriosis he could see, in places his colleagues wouldn’t even have looked. At 31, I was formally diagnosed.
I disappointed a lot of people. They all told me I was too gifted to leave science and too young to give up on my uterus, but I swallowed hard and did it anyway. I grieved it a long while, but never with remorse. I never expected to be proud of being a quitter.
I got my life back — except that it didn’t look anything like my life. It looked like suspended animation between hibernation and spring. I’d expected recovery to be swift and simple — for the damage to be undone overnight. Instead, it took years to transition to the person I am now — the person who gardens, who works from home, who is aware of her breath and her needs and her tension. The person who is no longer afraid of saying no, of missing out, of leaving things imperfect and unhurried.
It took years to become a person who quits. I walked out on academia when it showed me that my dream career came at the cost of the lifestyle I needed to protect my wellness. I walked out on hormones and dismissive doctors and the IVF hamster wheel. I disappointed a lot of people. They all told me I was too gifted to leave science and too young to give up on my uterus, but I swallowed hard and did it anyway. I grieved it a long while, but never with remorse. I never expected to be proud of being a quitter. My ambitious teenage self would be appalled.
When my husband was ready to parent, we came to our most tender compromise. I didn’t want to stand in the way of his happiness, but I also didn’t want to possibly lose my life while creating another. So, we replaced me in the equation with an egg donor and a surrogate. I opted out of pregnancy to protect my body and mind from further grief. It was a relief to put my husband’s name on the “patient” line at the fertility clinic instead of mine. While I’ve never craved children and can’t fathom being called “Mom,” I love the vision of the two of us anchored by him.
Some people may think I took the easy way out by relying on a privilege that few can access, but nothing about surrogacy was easy. It was deeply destabilizing to find ourselves in debt in many ways, to trust a stranger to grow our baby miles away from us and to somehow be comfortable relinquishing the very little control and consent that one has in fertility settings. Both the joy and the grief of every milestone were unbearably abstract, and I soon realized I hadn’t protected myself from much of anything. Still, I was grateful not to play with the fire of hormones so as not to taunt my illness or the cancer risk lurking in my family tree’s branches.
In recent years, despite the three subsequent surgeries I’ve had with another empathetic surgeon closer to home and all the lifestyle changes I’ve made to prioritize my wellness, I realized I was finally done hauling my womb around like a suitcase with a broken wheel. Like pregnancy, a hysterectomy is not a cure for endometriosis, but it does cure adenomyosis. I’d reached a point where I was done with the depleting bleeding. I was ready to call it quits on my uterus.
Unfortunately, asking for a hysterectomy in your 30s usually doesn’t go over well when you are child-free. It doesn’t even go over well when you are naturally menopausal or vulnerable to cancer. But it does, sadly, go over better if a surrogate is carrying your baby. My surgeon was visibly more comfortable agreeing to a hysterectomy once she knew we were pregnant with our surrogate. Even then, I had to bring a urine sample to the hospital on the day of my surgery for the lab to perform a single analysis: a pregnancy test. The physician’s task is to be absolutely sure that you are sure about the procedure.
The morning of my hysterectomy, right before being put under, I confessed something to my surgeon. In the months wedged between the date on the hysterectomy consent form and the surgery date, we’d had a stillborn. Our surrogate was no longer pregnant, and she was no longer our surrogate. I hadn’t volunteered this information to my surgeon until then, fearful that it would jeopardize my right to the hysterectomy. Even on that morning, I worried my surgeon would refuse to perform it for fear of my potential regret, and I hoped I’d still wake up uterus-free.
Thankfully, at this stage, there was no pushback on my decision. Perhaps I’d endured enough as a patient, checked off all the boxes, and finally deserved a pass on resilience. I wish medicine and society would believe us earlier, instead of chronically discrediting our experiences. The road would be much less harrowing, and we’d have more stamina left to weather life’s inevitable tides.
Enough making us grin and bear everything until the edge of forever, because if there is anything that has remained a constant in all my seasons of blooming and wintering, it’s that I am the only one who inhabits my body. I am the only one who knows its needs and the limits of its resilience, and no matter how hard it is to justify it to others, I know that sometimes, quitting is healing.
Kristina Kasparian is a writer, health activist and entrepreneur with a Ph.D. in neurolinguistics. Her writing about identity, wellness and social justice has been published by Roxane Gay, Longreads, Electric Literature, Newsweek, Catapult, Fodor’s, Condé Nast, Elle, the Globe & Mail, and elsewhere. She was a two-time finalist in Roxane Gay’s Audacious Book Club Essay Contest and shortlisted for CRAFT’s Memoir Prize. She is querying a lyrical memoir about reclaiming lost confidence in work, health and motherhood.Connect with her on Instagram @alba.a.new.dawn and kristinakasparian.com.
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