Most people go through life dreading a serious diagnosis and surgery. I spent my formative years begging for both.
At 30, while my peers were advancing their careers and growing their families, I couldn’t shower without vomiting from the strain it put on my body.
I couldn’t pull up my underwear or tie my shoes without my husband’s help.
I couldn’t stop fidgeting from the nerves that fired down my left leg. I couldn’t tolerate a seatbelt across my liver, a full bladder or more than an hour in pants. I couldn’t project my voice, not from a lack of confidence but because of the stabs I’d feel in my collarbone with every breath or cough.
I’d spend at least ten days in bed a month, especially (but not only) around ovulation and my period. I had intestinal blockages that made me holler on the toilet, bloating that made people give up their subway seats, and vaginal burning that made me shove a pillow between my legs after sex.
Chronically anemic but unable to stomach any iron, I’d collapse on the couch no matter what was urgent and how much I cared.
It was nothing new. It had just become unbearable.
This unnamed madness that had inhabited me since childhood eventually grounded my travels, limited the job offers I could accept post-PhD, buried me in debt despite my many scholarships and wrapped my brain in a fog that everyone assumed was burnout after grad school.
I knew what it was, but I couldn’t get a single doctor to confirm it.
“Can we please check if it’s endometriosis?”
I lost count of how often I asked doctors this question and how many of them said I was too young to have it, that it was rare, that I just had a UTI or IBS or acid reflux, and was I seeing someone about my anxiety?
It’s easy to focus on anxiety when a patient is an overachiever from an immigrant home. It’s easy to zoom in on the ovaries of a married woman in her reproductive age, even if she tells you she’s not looking to have kids. It’s easier to count follicles during ultrasounds than to count days of missed school, missed work and missed fun.
Even when my earliest periods were light and tolerable, I struggled with sharp pinching near my bladder, a bowling-ball weight in my pelvis, a monthly migraine that nothing would appease and disabling digestive problems: constipation, diarrhea, nausea and food sensitivities that appeared out of the blue.
These red herrings shouldn’t have been red herrings if doctors had been trained to recognize the classic whole-body constellation of symptoms triggered by endo.
But no matter how matter-of-factly I communicated what I was experiencing, I left every appointment empty-handed and invalidated.
At 17, an ER doctor was convinced I was bleeding out from a miscarriage even if I insisted it was “just” my period, that I’d always pass clots the size of half my palm.
“A fertility doctor told me endo is a ‘career woman’s disease,’ the consequence of dilly-dallying with pregnancy.”
Kristina Kasparian
At 29, I lost feeling in my vagina from a doctor who overdosed me with a lidocaine shot and injured me with a speculum while rummaging for my cervix, which I found out two years later was pulled out of position from adhesions — inflammatory bands of fibrous scar tissue that distort anatomy and impede organ function.
At 32, I was dismissed from a pain clinic after waiting nearly a year to be admitted, because the doctor subscribed to the outdated belief that endo was a gynecological issue that didn’t cause chronic pain and didn’t warrant multidisciplinary intervention.
Each time, my despair was undeniable, but I was simply told to come back if it got worse or to hold out until pregnancy or menopause when hormones would resolve the pain (spoiler alert: they didn’t).
It was lazy and ignorant medicine.
Yet it was, supposedly, my fault. A fertility doctor told me endo is a “career woman’s disease,” the consequence of dilly-dallying with pregnancy. I was blamed for relying on the narcotics I was prescribed instead of trying yoga or better sex hygiene or motivating myself to get better. When I’d ask for my medical files, I’d find gems in there about how demanding and difficult I was.
I’d love to tell you the journey of an endo patient is now radically different than it was decades ago when I was a teen. Sadly, this is still the global norm.
Most people don’t hear the word endometriosis at a doctor’s office but through social media. They learn from their peers that endo is a condition where tissue similar to the lining of the uterus grows where it shouldn’t. They learn, as I did, that it’s common for endo to grow outside the pelvis, on any organ, as well as the spaces, ligaments and nerves between them.
At 31, I paid out of pocket and traveled six hours for my first of five surgeries. I naively thought diagnosis would bring total relief. I expected my life and career to click back into gear, but surgery was far from an overnight fix.
Being denied care for so long creates a disability.
I often wonder who I’d have been if I’d heard the words “it could be endometriosis” in my teens.
It would’ve changed the way I breathe, the way I pee, the way I make plans and set goals, the way I fear exercise and food and movement, the way my posture can’t be uncurled, the way I bully myself when I’m unproductive or unable. I might’ve continued my career in science, had fewer miscarriages, not spent hundreds of thousands on egg donation and surrogacy.
Maybe I wouldn’t get so angry each time I’m asked to consent to something before being informed. I wouldn’t need someone with me when I meet a new doctor, wouldn’t sit in the waiting room clutching a list of questions with clammy hands.
Despite affecting about 190 million people, endometriosis remains trivialized, underfunded and poorly researched. The greatest challenge in endo care is that the condition continues to be misconstrued as nothing more than a painful period though it is a complex and whole-body inflammatory condition.
Dr. Andrea Vidali, the Founder and Medical Director of the Endometriosis Surgical Specialists International (ESSI) and a reproductive endocrinologist/immunologist in New York, performs 500 specialized surgeries for endometriosis a year. Most US doctors perform fewer than 20, according to Intuitive Surgical. Vidali is also the co-founder of Endometriosis Summit, the only multidisciplinary endometriosis conference that gathers physicians, patients and activists.
By the time patients come to Vidali, they have experienced a traumatic medical history.
“Many of the poor outcomes we see in endometriosis are not the disease’s fault — they are the result of delayed diagnosis and surgeries performed without the necessary expertise,” Vidali told The Post. “We’re now studying the neurological and immune mechanisms of the disease. That’s where the real breakthroughs will come.”
Heather Guidone, BCPA, Program Director at the Center for Endometriosis Care in Atlanta, says the future of endometriosis care depends on recognizing endo as a complex, whole-body disease that requires specialized and multidisciplinary expertise.
“We need greater physician education and a more accurate public understanding of the disease,” she said. “When we invest in research and start listening to patients sooner, we can dramatically shorten the diagnostic delay and improve outcomes for millions living with endometriosis.”
In the words of Dr. Mona Orady, a specialized endometriosis surgeon in California, “If you think you have endometriosis, you most probably do.”
It took me nearly three decades to unlearn the stigma of being a demanding patient, of taxing the system’s resources by pushing for a second, third, tenth opinion.
Please know this: You are the expert who inhabits your body. Trust yourself and fight for the quality of life you deserve.
Kristina Kasparian is a writer, health activist, and entrepreneur with a PhD in neurolinguistics. Connect with her on Instagram @alba.a.new.dawn and kristinakasparian.com.
