Niamh lost 14 kilos in two weeks as excruciating illness spread through her body but doctors dismissed her

Niamh Anaya discovered her body was host to one of the most painful conditions in the world by accident, and only after doctors misdiagnosed her with an eating disorder.

Months before she turned 18, Anaya started losing weight at a terrifying rate despite eating normally, and rushed to her GP for answers.

"Everything I was eating was just going straight through me and I lost an immense amount of weight. I lost 14 kilos over a two-week period," she tells 9Honey.

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Doctors initially dismissed her fears and one even said she had an eating disorder, though she showed no signs of anorexia or bulimia aside from rapid weight loss.

"I told them, 'I do not suffer from poor mental health, something's going on inside my belly'," Anaya says. Eventually someone listened and she was sent for emergency surgery.

It was only after cutting the teen open that doctors discovered the real problem; her large bowel was riddled with endometriosis.

The astronomically painful and life-long inflammatory condition occurs when tissue like uterine lining is found in other parts of the body, often on vital organs like the bowels. 

It affects one in nine Australians who menstruate and can cause painful periods, pelvic pain, pain during sex, excessive bleeding, fatigue, bloating, nausea and even infertility.

When Anaya woke up from emergency surgery, doctors told her she had Stage 2 endometriosis. She had never even heard of it.

"I had no idea what it was, the education and the lack of knowledge behind it was insane," she admits, adding that even medical staff seemed underinformed.

According to Ovira's Bloody Big Survey* of over 1,100 Australians who menstruate, there's not enough education on reproductive issues like endometriosis in Australia.

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A whopping 90 per cent of respondents felt their school didn't give them enough information about reproductive health, and Anaya agrees.

Not only did she feel woefully uneducated about endometriosis before her diagnosis, she was also disappointed by how many doctors seemed dismissive of the chronic illness.

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"It's not that they're giving poor information, they just think we're [patients] uneducated and don't know it themselves," she explains.

"I know we are supposed to look up to [doctors] because obviously they're a lot more educated than us, but I think in this disease especially they don't have enough education."

She's had bad experiences with dismissive doctors who she says don't believe her when she details her symptoms and experiences with the condition and she's not alone.

The Ovira survey found 60 per cent of people who menstruate did not find advice from a medical professional beneficial.

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Anaya went through eight gynaecologists before finding a more empathetic specialist she felt comfortable carrying out her operations. His wife also has the condition.

In the four years since her endometriosis was uncovered, Anaya has endured seven surgeries – four of them in 2021 alone – and 35 painful ovarian ruptures.

"I spent a year severely unwell, but through social media you would've had no idea when I was 18 that I was really in hospital 98 per cent of the time," she says.

"I went to the government for funding because I had to have six to eight weeks to recover off work and you can't get any [financial support] for that. Nothing."

One of the operations l landed her in ICU for three days having neurological treatment, then she had to undergo six months of chemo injections and lost an ovary.

There have been countless hospitalisations and in 2021 she took about 11 months off from her work in disability care to completely focus on her health.

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Endometriosis was a "massive life changer" and the time Anaya took out to learn how to manage the condition completely changed her perspective on life and health.

"Some women have it very mildly. Some women have it to the point where they can't even function through a day. Everyone's management looks completely different," Anaya says.

And that's what the treatment for endometriosis is; management.

With no cure for the condition, most women have to undergo regular surgeries to contain the spread inside their bodies, as well as medication and other methods to manage symptoms.

Many doctors prescribe hormonal contraceptives to reduce the severity of periods and other symptoms, but Anaya says it only masks the illness instead of treating it.

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She personally relies on natural painkillers, naturopathic remedies, mindfulness and meditation to manage her symptoms, though there are times when it's not enough.

"Sometimes I'll spend a week in bed. It's bad. It's hard for your mental health, it's hard for your physical health, especially when you're young. It's debilitating," she says.

Over half of survey respondents are unable to complete everyday tasks every time they get their period, though that number is believed to be higher among people with endometriosis.

The excruciating symptoms can make it almost impossible for patients to work, forcing them to take sick leave or face workplace stigma around the condition.

Anaya says she's lucky; she runs her own disability support business and can work around her endometriosis, which she's open about with staff and on social media.

"I'm also very loud and proud to talk about it... I don't think you have to hide away from it by any means," she says, though she understands that stigma keeps many women silent.

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She hopes to change that by sharing her story and encouraging other women to be open about their own experiences to change the narrative around endometriosis.

This condition is so much more than just a "painful period" and needs to be treated as such in the medical field, the workplace and wider society.

For that to happen, there needs to be better education from schools to the medical field, as well as more government support for patients and research.

Ovira's survey found 95 per cent of respondents believe not enough is being done to support women's menstrual health in Australia and it's time to do better.

"The simplest way [to help] is just actually understanding," Anaya says of how Aussies can support endometriosis sufferers on a personal level.

"What most people struggle with is feeling like they sound like they're always complaining and if you've got an understanding of it, then they don't feel as much of a burden."

March is also Endometriosis Awareness Month and Aussies can learn more here.

Ovira's Bloody Big Survey surveyed 1,169 Australians who currently menstruate. The sample includes people living in every state in Australia, and respondents were aged between 12 and 69. The survey was completed in February 2023.