When I told the new doctor that deep breathing hurt my knees, the look I got from her said it all.
At 30, I knew that look.
It was the look I’d gotten at 14 when I told my doctor I didn’t think the constant burning in my bladder was an infection. It was the look I’d gotten at 16 from the ER nurse who kept insisting I was having a miscarriage no matter how many times I explained I was sexually inactive and that every period depleted me this way. It was the look I’d gotten at 24 when I asked if the ovarian cysts we kept ignoring were worsening my intestinal issues, and at 26 when I begged the gynecologist to test my hormone levels for early menopause, and at 29 when I pleaded for a referral to a liver specialist for my unrelenting nausea.
It wasn’t from a doctor that I first heard the word endometriosis. I heard it from a stranger I wouldn’t have met had I stepped into the bookstore just five minutes later. But even armed with this shiny term for what I suspected was going on with me, I couldn’t get much to change.
The problem was that “endo” was colossally underestimated as a menstrual disorder that couldn’t possibly be responsible for all these seemingly unrelated symptoms.
And colossally underestimated, it still is.
Endometriosis is a condition where tissue that behaves differently from the lining of the uterus (the endometrium) grows outside the uterus and, often, the pelvis. Adenomyosis, in contrast, is limited to the uterus as a condition where endometrial tissue grows into the uterine muscle.
The abnormal tissue triggers inflammation, fibrotic scarring, bleeding, and chronic pain. Though not everyone with endo will have the same range or severity of symptoms, it can cause painful sex, painful bowel movements, bloating, abdominal pain, nausea, constipation, diarrhea, bladder pain, immune system changes, food sensitivities, myofascial pain, pelvic floor dysfunction, nerve issues (like sciatica or vulvodynia), back pain, chest pain, difficulty breathing, anemia, mood disturbances, migraines, brain fog, crippling fatigue, cardiovascular issues, and infertility.
It’s a party, really.
The fact that pain and other disturbances intensify during one’s period because of hormonal and inflammatory factors doesn’t mean endometriosis is strictly a gynecological condition. Science has shown that endometriosis is a complex systemic disorder that affects every bodily system.
Yet every doctor I met discounted that endometriosis could cause such disabling agony all the time.
I learned to brace myself for the question I was asked at every appointment. “What do you do for a living?” Sometimes it came first, sometimes wedged between two others, but my answer always seemed to confirm what the doctor suspected. Instead of asking me what I could no longer manage to do because of my symptoms, doctors were quick to figure I must be extremely stressed and anxious as an ambitious young woman pursuing her Ph.D. I’d hear myself beg for surgery, yet I’d leave the clinic with a prescription for narcotics and hormones.
Hormone treatment is typically prescribed with the goal of suppressing estrogen production by the ovaries and blocking menstruation. Unfortunately, these “treatments” don’t stop the progression of endometriosis because they leave the disease in the body and ignore the scientific fact that endo lesions have distinct fibrotic and inflammatory mechanisms that produce their own estrogen, leading them to proliferate independently of the uterine lining.
Any hormones I was given altered my brain chemistry and drenched my thoughts in darkness. I’d use the wrong words in the wrong contexts, or suddenly leave my body and not recognize my hands, or stand up from a chair and not remember how to move my legs. I watched myself call in sick to my own birthday party and bail on my conference talks. At the start of my marriage and a promising career, I was unraveling into a person I could hardly recognize. When I asked for more narcotics to take the edge off the life-seizing pain that still pulsed at my core despite the haze of hormones, I was lectured on their addictive nature and reprimanded for using them as a crutch.
Was there a way out?
“Get your Ph.D. and get pregnant. Then you’ll feel better!” said the fertility doctor who recommended IVF to freeze my eggs before it was too late.
It didn’t matter whether or not I wanted kids and whether or not I was barely alive. With my ovarian function at near zero, their priority was pregnancy over pain. But I’d learned by researching the condition that, because endo behaves differently from the uterine lining, neither pregnancy nor menopause halts its growth. Still, to prevent regret, I said yes to freezing my eggs. IVF made me sicker, costing my body and mind more than I was expecting to give. I thought of it as a test to see if I could one day become a selfless mom.
From my teens to my 30s, no matter how outrageous my symptoms were, I’d feel worse after every appointment. I’d go in expecting a dialogue and find myself scrambling to finish my sentences before being cut off. One gynecologist even snatched my paper from my hands, annoyed that I had a list of questions to ask him. I started worrying about things like how to look well enough to be respected but ill enough to be treated with urgency. When I’d request a copy of my medical records, I’d find gems in the notes about how demanding or dissatisfied I was.
I learned that, even when you diligently research the illness that inhabits your body 24/7, what you know doesn’t count as fact. I was even dismissed by a pain management clinic where they believed endo doesn’t cause pain or require multidisciplinary approaches. When I tried to point them to scientific evidence to the contrary, they discredited my credentials. Too often, we aren’t even seen as reliable reporters of our own lived experience.
At 31 I met a specialist who saw endo as a whole-body problem that requires complex surgery. I traveled six hours to see him and paid out-of-pocket for the consult, MRI, and surgery I’d been denied at home. I learned how deeply distorted a person’s anatomy can become from endo and suddenly felt grateful I hadn’t fallen under the scalpel of an inexperienced ob-gyn. Because multiple systems are involved, as they’d been in my case, the collaboration of colorectal, urological, and thoracic surgeons is key.
What I didn’t realize after my first surgery was that the climb to get there was only one hill in the mountain range. I expected my life to click back into the gear it was in before. But surgery is not an overnight fix. Fighting for care for so long leaves its own stains and scars. When the surgeon was done, the rest of the excavations were mine to make.
I had to relearn how to breathe, how to pee, and how to move. I had to release the muscles that had hardened to guard a vulnerable body. I had to retrain my nervous system to tone down its blaring sirens. I had to practice looking in the mirror without averting my eyes from this body that had aged before aging. I had to rethink my perception of time, to unlearn hustling to the point of self-sacrifice, to stop seeing resting as missing out. Between each of my five surgeries I had to learn to live with a condition that never really leaves, with grief and relief tangled in a single pocket.
And to do any of that, I’ve needed an expert team with a toolbox of techniques—a psychologist, a pelvic floor rehabilitation therapist, an osteopath, a nutritionist, and a massage therapist. A diagnosis isn’t optional, nor is it enough.
Endo has changed the way I show up for myself and for others. Now I prioritize my quality of life with a protectiveness bordering on selfish. I quit academia and created a lifestyle where my work didn’t have to cost my wellness. I quit fertility and summoned the courage to lean on an egg donor and a surrogate instead. I quit my uterus before my 40th birthday, weary of the weight of adenomyosis and of the cancers skulking in our family tree.
It’s taken me decades to become the person I am now—the person who defines success as the calm she manages to feel by bedtime, no matter what the day delivers. I still overdo it on good days, skeptical that they’ll stay. I still work from bed and dread unannounced visits and spend way too much time on the toilet. I still worry that on the other side of everything I get through, there’s more hardship on the way.
But what I no longer do is what I should’ve never done in the first place: I no longer hush my instincts or feel shame for being too demanding.
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, HuffPost, Condé Nast, Longreads, Electric Literature, Newsweek, Catapult, Fodor’s, Elle, the Globe & Mail, and elsewhere. She was a two-time finalist in Roxane Gay’s Essay Contest and shortlisted for CRAFT’s Memoir Prize. Connect with her on Instagram @alba.a.new.dawn and kristinakasparian.com.
Top Image Courtesy Of Yulia Reznikov
