One hundred and twenty-seven. That’s precisely how many grey speckled dots are on the ceiling of my primary school sickbay.
I’m 10 years old and lying down on a scratchy bed, knees pressed to my chest with rattled breaths trying to choke back tears while I wait for my mum to pick me up, again.
I’d got my first period a few months earlier and had quickly become a habitual visitor to the sickbay and an expert dot counter to pass the time. A teacher, who exchanged a pointed look with the school receptionist upon seeing me, walked into the sickbay and knelt down beside me.
“You can’t keep doing this Hannah,” she said squeezing my hand sympathetically. “You need to remember you’re not actually sick. This is very normal, something every woman goes through.”
Nearly 15 years later, this memory stays with me. It’s a pivotal reminder of my journey with chronic pain and the struggle to be believed.
For a disease that remained underfunded and under-recognised for so long, endometriosis has found itself repeatedly in the headlines over the past two years.
The latest story, broken by this masthead, centres around Melbourne gynaecologist Dr Simon Gordon, who is under investigation for performing unnecessary endometriosis surgeries on women, including removing their ovaries and uterus, despite no clinical evidence justifying the procedures.
Like many patients, my journey with endometriosis has been characterised by confusion, pain and delays.
I spent most of my adolescence dreading my periods, which were always horrifically long and unbearably painful, resulting in cramps that left me vomiting and partially bedridden.
I dodged questions from well-meaning friends who didn’t understand why I couldn’t just pop some Panadol and “get on with it” and tried to ignore others who queried if I had an unusually low pain tolerance.
In 2024, I connected with a compassionate local GP who was alarmed by my casual admission that I had been bleeding consecutively for more than three weeks. She referred me to one of the top gynaecologists in Melbourne.
An internal scan revealed no signs of endometriosis, however given my history of pain, the gynaecologist recommended proceeding with a laparoscopy.
What was intended to be a 45-minute procedure took two and half hours. Endometriosis had invaded 12 different areas of my body, including my pelvic wall and rectum.
I had stage three endometriosis – the most my surgeon had ever seen.
When I read and listened to Gordon’s patients’ harrowing accounts in this masthead and in ABC’s Four Corners investigation, I burst into tears.
Even though my experience with surgery is vastly different to the traumatic experiences Gordon’s patients endured, I was struck by the common denominator between us – our deep and desperate desire for our pain to be believed.
I waited for nearly 14 years for my pain to be taken seriously and was lucky enough to meet a GP and a gynaecologist that treated me with respect and compassion. This is not the experience for many patients.
Media coverage around Gordon’s alleged malpractice has no doubt alarmed many women with endometriosis diagnoses who will now understandably question the necessity of their previous surgeries. I imagine it will also unfortunately cause many patients with painful periods to question and doubt specialists’ advice.
This story is so much bigger than just one surgeon. It’s about a hospital that didn’t act quickly after receiving complaints and a systematic failure from Australia’s health watchdog to hold practitioners accountable. More broadly, it’s the consequence of a medical culture that consistently dismisses women’s pain, no matter how loudly we shout.
Victorian Health Minister Mary-Anne Thomas criticised the regulatory body earlier this week, saying: “What is clear to me through this investigation is that AHPRA have been too slow to act, and that they have not taken the complaints of women seriously.”
While surgery was definitely the right option for me, it may not be the answer for others. Patients with painful periods deserve better detection methods, comprehensive treatment options and broader education around management.
When I received my endometriosis diagnosis I felt an overwhelming sense of grief for my 10-year-old self who spent so many lunch breaks huddled up in that sickbay with a hot water bottle, questioning why I wasn’t tough enough.
I also felt immense gratitude for my wonderful healthcare workers who believed me, believed my pain and who handled my body with dignity.
I wish all women had the same experience.
Hannah Kennelly is a staff sports reporter.
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Hannah Kennelly is an award-winning sports reporter and Formula 1 writer at The Age.Connect via email.
