AFTER experiencing the immense sidesplitting, breath-taking, “did something just burst?” level of pain associated with endometriosis, I’ve become well-acquainted with the labyrinth of obtaining a diagnosis.
While attempting to describe the feeling of having a marionette puppet made out of several internal organs which pull and contort if I even so much as bend my leg or sneeze, I’ve been met with my fair share of dismissal.
A few years ago, I conquered the public hospital waitlist, which landed me a coveted appointment with a specialist.
My hopes for the elusive endometriosis diagnosis, which would explain my litany of symptoms, were soon quashed when my male gynaecologist scoffed when recounting my experience.
He asked: “But do you know what period cramps even are?”
Fifteen minutes later, and without so much as a snapshot of my medical history, I was out the door en-route to pick up the contraceptive pill – which would alleviate my symptoms.
But my classic migraines, which were once a rare occurrence, would soon return weekly like clockwork, and as I later found out, my risk of ischemic stroke increased greatly.
Even my GP was furious – he called the hospital to give them an earful and even asked me if he could advocate for a laparoscopic surgery in retaliation.
But like many others in the same position, I didn’t want to be dramatic, in fear I’d clog up the public health system with my uncertain diagnosis.
After all, surely I don’t have it that bad, other people have it much worse, right?
According to Endometriosis Australia, it takes an average of six-and-a-half years to be diagnosed.
It affects one in nine women, girls, and gender-diverse people at birth, but there is no cure.
It’s a disease that can only be diagnosed through surgical intervention – a cruel blow to those who don’t have the financial means to front out-of-pocket costs, or those who can’t afford the time to hang around on a waitlist.
It’s also enormously underdiagnosed disease.
And in the meantime, patients living with ‘Schrödinger’s endo’ are forced to bite through the pain and the emotional toll it leaves in its wake, often dotted with insufficient medical treatment for their needs.
The ‘gold standard’ for managing symptoms is contraceptive medication, which comes with the pleasure of mood swings, depression, migraines, weight gain and more.
Yet too often, those living with endometriosis are typecast as the ‘hysterical woman’ in the doctor’s office, the workplace, and by those who choose to look the other way in the face of a disease that isn’t immediately apparent.
As Endometriosis Awareness month draws to a close, there’s plenty to celebrate.
Australia’s first Endometriosis and Pelvic Pain Clinics are set to be rolled out nationwide.
Countless patients and those suffering with symptoms of endometriosis have bravely shared their stories.
But until people can universally visit a doctor without being gas lit into believing that their symptoms are insignificant, or take time off work without feeling pressured to “just get over it”, we still have a long way to go.
