'I had to repeatedly beg doctors for an endometriosis diagnosis'

Like Bindi Irwin and other women struggling with endometriosis, Zoe knew "something wasn't right" but no one would listen.

"Growing up, I had such faith in the medical community. I thought that, no matter what, doctors could make me well. But for people living with endometriosis, chronic pain, or any other kind of invisible illness, being dismissed is not uncommon."

“There’s nothing wrong with you,” the gynaecologist told me, peering over the papers in her hands.

“And you’re so young,” she continued, her eyes looking over me. “We wouldn’t want to open you up again to check it out.”

I gritted my teeth, inhaling deeply, before loosening a calming breath. Crisp air scented with disinfectant filled my lungs and did nothing to ease the emotional storm brewing inside me.

It had been almost two years since my first laparoscopy, a surgery that can be used to diagnose and remove endometriosis. Two years - longer even - that I’d been begging for help, only to be completely and utterly dismissed by the medical community.

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"Like someone was pouring acid through my uterus"

I’d been experiencing intense pain for almost a decade, mostly around my periods. In school, I remember them being so painful, all I could do was clutch my abdomen and cuddle myself in the foetal position. I couldn’t run in PE, and my teacher called me lazy; but really, I was just in agony. But I thought this was normal - I was told this was normal. Spoiler alert: it’s not. But I didn’t know that. Not until I broke my wrist one drunken night, and realised the pain in my abdomen was worse than a broken bone.

And then the pain became more frequent. It would come outside of periods, accompanied by a host of other symptoms, like extreme nausea, extreme fatigue, brain fog, and pain not just in my abdomen, but throughout my body, too. It felt like I was being stabbed, over, and over and over again. Like someone was pouring acid through my uterus, and taking my ovaries and twisting them.

It’s such a deep, constant pain, and it impacts me almost every day. Sometimes, I can cope, because I’m used to it. But simple, everyday tasks can wear me out, and even something as small as going to the shops, or cleaning my house, can leave me writhing in a pain so intense, not even the strongest painkillers could touch it.

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The doctors didn't seem to find anything during my endometriosis surgery. Image: supplied.

"I knew what I was experiencing wasn’t normal"

So, I knew, without a doubt, that what I was experiencing wasn’t normal. However, trying to convince a medical professional that was a whole other story. After posting my symptoms in support groups online (and doing research of my own), I was encouraged to look into endometriosis. I saw a dozen GPs and specialists, most of whom were dismissive.

“It’s dairy,” the first doctor I visited said, looking down her nose at me.

“I’d can’t be,” I responded calmly. “I’m vegan, I don’t eat dairy.”

She scowled. “Well, then, it must be your weight.”

I stormed out. For the record, I am a size 16. Not skinny by any means, but certainly not enormous (and not that my size should be any reason to be dismissive of genuine health concerns, anyway). I’d also been curvy most of my life - and knew this was different. But this doctor’s attitude sadly isn’t uncommon.

Other specialists didn’t want to check for endometriosis in the first place, due to my age. Then at 22, they told me endometriosis doesn’t happen to young women (wrong). They did countless tests and scans, over and over again. Eventually, I managed to convince them to give me a surgery (it’s the only way to officially diagnose endometriosis), only to find... nothing. Well, allegedly.

I was stuck in a space where they believed something wasn’t right, but they couldn’t find it - and refused to investigate. Instead, I’d go to countless appointments where I’d beg for help, and they’d tell me nothing. It made me feel alone. It made me feel crazy. Is it just in my head?  I’d wonder. And yet, the pain continued.

So, on this particular day, under the somewhat-flickering fluorescent hospital lighting, I’d had enough.

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"It was the longest five minutes of my life"

“Please,” I begged the gynaecologist. “I’ve been coming back here for two years. I’m in so much pain all the time. I know something isn’t right, but no one will listen to me. Please, isn’t there anything you can do?"

A pause.

The gynaecologist pursed her lips, and stood. “You know what? There’s a senior gynaecologist on today. Let me ask him.”

It was the longest five minutes of my life. But finally, she returned.

“The doctor had a look at your scans from your first surgery two years ago. It looks like there’s some signs of scarring that were missed. We’ll run a few more tests for you.”

After a particularly painful DIE scan, they told me I had a fused ovary and some possible adhesions, most likely caused by endometriosis. 

I want people who can relate to my story to know that their pain is valid and they are not alone. Image: supplied.

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"It takes some people decades of begging to be heard"

I cried on the drive home. I called my mum. My partner. Because finally - FINALLY - after years of begging to be heard, they found something. It wasn’t in my head. And as it turns out, my original surgeon wasn’t even an endometriosis specialist: and yet, they’d told me nothing was wrong with me. 

It makes me so angry that I am lucky. Had that gynaecologist not asked for a second opinion, had that specialist not been in the office that day - would I have received help? Probably not for a long time. 

If you can relate to my story, I want you to know pain is NOT in your head. You know your body. If one doctor won’t help, find someone who will. I know it’s hard - but you’re stronger than anyone around you knows. 

And you are not alone.

Originally published as 'I had to repeatedly beg doctors for an endometriosis diagnosis'