The experiences of endometriosis patients with diagnosis and treatment in New Zealand

Originally published on RNZ by reporter Felix Walton

A new University of Canterbury survey shows New Zealand women with endometriosis on average experience a nearly nine year delay between symptoms and treatment.

Hannah had been in and out of hospital more than twenty times, and had seen at least 30 doctors.

She had been seeking answers for eleven years, enduring severe pains that had her bedridden every time she had her period.

In that time she missed weeks of school and work, and the interruptions cost her a job she had worked in for three years.

“I was called into a disciplinary meeting, because I had taken too much time off work,” she said. “They didn’t believe that I had a real reason for all this time off, I could see they were getting more and more frustrated with me.”

After three surgeries and a decade of false starts, Hannah finally got her answer: she has endometriosis.

Hannah is just one of an estimated 120,000 New Zealanders with the condition, one in every 10 women, and each could tell a similar story.

A new survey from the University of Canterbury put the average delay between symptoms and treatment at nearly nine years.

Author Katie Ellis said many people didn’t understand the condition, despite its prevalence. “It occurs when tissue that resembles cells you would find in the uterus are found in other parts of the body,” she said.

“Between 10 and 15 percent of women, and people assigned female at birth, are expected to have endometriosis.”

Ellis said many doctors were hesitant to diagnose endometriosis, because the process was so invasive.

“It has all these debilitating symptoms, but the symptoms aren’t unique enough to endometriosis to hear ‘X, Y, and Z are occurring,’ and know 100 percent for sure that it’s endometriosis,” she said. “The only way any endometriosis patient can get diagnosed is by surgery.”

Though some cases could be detected by ultrasound, surgery remained the only way to rule it out completely. As a result, Hannah said she was repeatedly dismissed and redirected by the doctors she hoped would help her.

At one point, hospital staff even ignored proof of her endometriosis. “I was looking through my own notes from all of my hospital stays, and I found an ultrasound from 2018 that said ‘probable endometriosis,’ but it was never discussed with me,” said Hannah.

“Not from any specialist, not from any of my GPs, not from anyone.”

With a lack of female surgeons, Hannah struggled to find an empathetic doctor. “From my experience the male doctors I’ve seen have definitely been a lot less understanding,” she said.

On one occasion, Hannah was told she would “grow out of it.” At the time, she was 22 years old.

But Hannah said the issue stemmed from ignorance, not sexism. “I’m not sure I would call it sexism, but just a lack of understanding and empathy for women and what they’re going through,” she said.

Hannah first learned the term “endometriosis” five years ago, but doctors ignored her every time she suggested it. She said Endometriosis New Zealand, a national advocacy group, taught her she wasn’t alone.

Endometriosis New Zealand chief executive Tanya Cooke said it was one of the only forms of support available in this country, but it was struggling to stay afloat. “We don’t receive any government funding,” she said. “As you can imagine, we don’t have the resources to really tackle this issue.”

Cooke urged the government to fund research on other ways to diagnose endometriosis. “Fundamentally, we need the government to step up and invest in an endometriosis action plan,” she said.

Hannah said the decade-long ordeal had started to wear her down, both physically and mentally.

“It’s been really hard throughout the last decade to keep advocating for myself,” she said. “There were a couple years where I just accepted the pain and thought: maybe they’re right, maybe it’s all in my head, maybe I’m just making it up, maybe I’m just being dramatic. You really start to question yourself.”

“When my surgeon came around and said, ‘yep, we’ve found it,’ I just burst into tears.”

Hannah did not expect her pain to disappear, but she said attaching a name to the condition changed her life.

For thousands of other women, though, that relief was years away.

“I want to tell any women out there to always back themselves and listen to their bodies,” said Hannah. “I know it can get really hard and it might take a while, but keep on going.”

“You’ll get your diagnosis eventually.”

Disclaimer: Whilst Endometriosis New Zealand was consulted for this article and provided material that represents the organisations views. The final article is written by RNZ and does not necessarily reflect the opinions, language, and beliefs of Endometriosis New Zealand.

Strength through support - mā te tautoko, ka whai kaha, ka ora

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