It typically takes years to get an endometriosis diagnosis. Photo / 123rf
It typically takes years to get an endometriosis diagnosis. Photo / 123rf
Opinion by Nadia Bokody
OPINION:
Eight hours. That’s how long I was in pain before anyone believed me.
I’d passed out on my way to the bathroom and regained consciousness a few moments later in my partner’s arms. My shorts were soaked with urine and the room looked different. Fuzzier, somehow.
I don’t rememberthe ambulance being called, or how long it took to arrive; only the voice of a male paramedic crouching beside me, saying, “It’s probably just strong menstrual cramps. I wouldn’t advise going to the hospital, you’ll be stuck in ER for hours”, and then the sinking feeling of shame.
“I’m worried I’ll black out again. Can you make sure I can stand before you leave?” I’d asked.
Almost as quickly as I was hoisted to my feet, a surge of pain tore through my pelvis and hurled me into darkness again.
Still, it would be another three hours lying in an ER bed and several more assurances from various medical staff I was likely experiencing “bad period pain” before a doctor investigated the source of the violent stabbing sensation inside me.
“You have internal bleeding. We’re going to need to get you into surgery immediately,” he’d announced; his eyes widening at an image on the ultrasound monitor in front of him.
A large endometrial cyst that had been silently blooming on my right ovary had ruptured, leaking blood and fluid into my lower abdomen. It was one of several growths taking up roots on my ovaries and fallopian tubes as a result of untreated endometriosis.
Colloquially referred to as “endo”, endometriosis is a condition that causes tissue that usually lines the uterus to grow outside of it – often on the ovaries, fallopian tubes, or intestines – which can be excruciating, especially around menstruation and during sex.
The pain of endo is so agonising for some women, it’s been described as; “like your insides are being pulled down”, and is estimated to cause sufferers to miss an average of 19 days of work per year.
If left untreated, endometriosis can lead to infertility, scarring and serious health complications. But despite its pronounced, debilitating symptoms, it typically takes years to get a diagnosis and receive treatment.
“Unfortunately, endometriosis is often missed and it can take several years to get a diagnosis – the average is about seven years,” reads a report by Healthdirect Australia.
Bindi Irwin revealed she’s been struggling for 10 years with undiagnosed endometriosis. Photo / Instagram
The only way to reliably detect endometriosis is via laparoscopic surgery – something I was routinely told was unnecessary in the years I spent presenting to doctors’ offices pleading for answers as to why my period rendered me bedridden each month.
“Some women are just really sensitive to pain. Consider going on the pill,” a gynaecologist once informed me while pressing on my stomach as I laid on an examination table.
I heard variations of this repeated by healthcare professionals so many times throughout my 20s, I began to internalise it. Perhaps the pain was all in my head …
“The essence of dehumanisation is the denial of another person’s reality. To be told, in the absence of clinical evidence, that one’s pain is not real or that one’s biological symptoms are exaggerated or psychosomatic,” writes psychologist Leigh W. Jerome, in Psychology Today.
This experience is known as “medical gaslighting” and it’s incredibly common for women presenting to doctors with pain.
A paper published in Academic Emergency Medicine found female ER patients with acute abdominal pain are 25 per cent less likely to be treated with appropriate pain relief than men. And a study published in the New England Journal Of Medicine, showed we’re also seven times more likely to be discharged in the middle of a heart attack.
In 2020, a Reddit user famously shared their experience of endometriosis in a thread dedicated to autopsy doctors.
“I assisted with a post-mortem when I was a student. Female patient died in her forties. Her medical history had extensive complaints of abdominal pains, one doctor even referred to her as a ‘hypochondriac’,” it read.
“Opened her abdomen and she had extensive scar tissue, she was absolutely massacred inside from endometriosis. She suffered for decades and never got referred for a laparoscopy. (Patient cause of death was unrelated.)”
There are infinite horror stories of women suffering irreversible scarring after having their endo pain ignored by medical practitioners for years and even decades.
Australian conservationist Bindi Irwin revealed her own nightmare experience in a recent post about her decade-long battle with untreated endometriosis.
“For 10 years, I’ve struggled with insurmountable fatigue, pain and nausea … A doctor told me it was simply something you deal with as a woman and I gave up entirely, trying to function through the pain,” Irwin shared, noting, “[the] validation for years of pain is indescribable.”
The word validation is something that comes up a lot when you read through online forums of women sharing their endo diagnoses.
Because the real horror story for most sufferers isn’t the relentless torment of physical pain. It’s the systematic denial of that pain – to be told over and over again, that our experiences are invalid, and we cannot be trusted to author our own reality.
Endometriosis isn’t curable, and unfortunately, mine regrew in the year after my first surgery. I’ve since had two more, which have left small scars beneath my belly button.
They’re a small price to pay for giving me my life back. And in time, I expect they’ll fade.
What won’t fade though, is the trauma of being unheard. That scar is one that, along with many women I know, will stay with me forever.
