Wednesday, December 1, 2021

“I No Longer Wanted to Be Alive… But Now I Have Hope”: How the Healthcare System Fails Women with Endometriosis

Guest writer Sophie Sager describes her years-long battle to be diagnosed with endometriosis after countless dismissals and asks, why is our healthcare system failing us?

I was around 11 when I first started getting excruciating abdominal pains that sent me home from school. I’d curl up in my bed in the foetal position and cry for hours and hours, waiting for them to pass.

My grandma had coeliac disease so my doctor thought it might be that, but the test came back negative. ‘Perhaps it’s IBS’, they said. So, they put me on the extremely restrictive low FODMAP diet and called it a day.

When I first got my period at 14 they were two weeks long and so heavy I became anaemic. So, my doctor put me on the pill.

When I had sex for the first time at 16, it was so painful I cried. But my friends assured me that their first time hurt too, and that it gets better. It never did.

I kept hearing, over and over and over again, ‘Your test results came back normal’. You’d think those words would be a relief, especially when you’ve convinced yourself you’re probably dying of cancer. But when you’re sick and no one can tell you why, they make you want to scream.

One morning at the hospital a nurse came into my room to take a blood test. “You must be used to this by now,” my mum said. Except I broke down in tears, almost having a panic attack. “I’m so fucking sick of strangers poking and prodding me,” I yelled at her. I felt more like an animal than a human being.

Sophie in hospital after her first surgery

By the time I was 24 I was peeing blood and throwing up almost every day. The abdominal pains were so severe they resulted in countless 2am visits to the emergency room. I had blood tests, urine tests, stool tests, ultrasounds, x-rays, even an endoscopy. Guess what? All normal.

In my search for answers, I eventually stumbled across a subreddit called r/endo. Before this, I knew one woman with endometriosis, but all I knew about it was that she couldn’t eat certain foods. I spent hours reading through posts from women all over the world with experiences just like mine – unexplained symptoms, dismissive doctors, normal test results.

“Perhaps it’s just anxiety. Is your job stressful?” I was asked more times than I could count. I read in a book about endo that around 75% of endometriosis sufferers have been dismissed as being “neurotic”. Have you ever heard anyone use the word neurotic to describe a man? I haven’t.

Endometriosis is chronic inflammatory condition where tissue similar to the lining of the uterus (endometrium) grows outside the uterus. It affects 1 in 10 people with uteruses. Endometriosis has been found on every major organ in the body – the heart, lungs and even the brain. It is not known what causes endometriosis, and there is no cure.

I raised my suspicions with my doctor and pushed for a referral. A few months later I had a diagnostic laparoscopy which confirmed I had endometriosis. I thought finally getting my ‘I told you so’ moment would feel a lot better than it did. Instead, I just felt hopeless. I’d already been sick for at least 10 years, but it had never occurred to me that I might be sick forever.

Have you ever heard anyone use the word ‘neurotic’ to describe a man? I haven’t.

The gold standard treatment (not cure) for endometriosis is excision surgery, where they cut as much of the diseased tissue out as possible. Yet many doctors in New Zealand are still performing ablation surgery, where they burn off the endometriosis tissue, which according to some sufferers, causes more harm than good and can leave the patient with more pain than they had before surgery.

Endo feels different for everyone. For me, it feels like someone has taken a bunch of old, rusty, blunt knives, put them into a fire until they’re scalding hot, and is stabbing me in the abdomen repeatedly. Over and over and over again, for hours. Even the strongest pain killers don’t touch the pain – I just have to wait for it to pass.

I had excision surgery in Melbourne, where I now live, two months ago. My surgeon is world-renowned for his expertise and the surgery cost around $15,000. I still have endometriosis. I still have symptoms. I still require ongoing care (including seeing a physiotherapist, pain psychologist and dietician). And unless a cure is found, I always will. But before my surgery, I no longer wanted to be alive. The pain was too unbearable, too constant. Now I have hope.

It’s hard not to wonder what my life may have been like if I’d been taken seriously when I first started getting symptoms. When you’re young people are constantly telling you to make the most of it, that these are the best years of your life. But I spent most of mine sick, with doctors trying to convince me it was all in my head.

Unfortunately my story isn’t unusual. The average time it takes to receive an endometriosis diagnosis is 7-10 years.

Endometriosis is a healthcare crisis. While the disease itself isn’t fatal, we are dying – from suicide, from overdosing on painkillers, from surgery complications. People are losing their organs, their fertility, their ability to walk, their careers.

If you Google endometriosis, almost all the definitions that come up are incorrect. Many medical professionals don’t even know the proper definition. We don’t have enough endometriosis excision specialists (there’s about 100 in the whole world, and nearly 200 million people with endometriosis). Instead, we are being offered birth control, narcotics, and even chemotherapy drugs. Too many of us are being turned away from hospitals and emergency rooms, when all we want is someone to help us.

The healthcare system has failed us. And we deserve better.

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