Ali Richards is a 37-year-old mum of one.
She had symptoms of endometriosis for 17 years, but constantly felt like she was neglected by the New Zealand health system.
“I used to just get fobbed off, get prescribed codeine and paracetamol and told 'oh don't worry, it's just your period',” she said.
After not knowing what was wrong with her, she was finally diagnosed with the disease in 2017.
She's had three surgeries since, even then, she says she's not been taken seriously.
“One doctor actually googled it, he had no idea what it was, and he goes 'well it doesn’t really sound that bad, you just need to take your pills, go home and rest'.”
The inflammatory disease affects 1 in 10 women in New Zealand, around 130,000, and can cause infertility and extreme pelvic pain.
The CEO of Endometriosis New Zealand, Deborah Bush, says it’s been a dreadful disease for girls and women for centuries.
“They're holding the sides of the toilet and sweating to even move their bowels, when they can’t actually go to school - that follows on for their career,” Bush said.
A set of guidelines was launched in March, aiming to improve the diagnosis and management of the disease.
“What has happened with Covid, is that it’s been completely side-lined.”
An email from one of the country’s DHBs obtained by 1 NEWS says the disease isn’t considered a priority, and there’s little enthusiasm amongst clinicians to adopt the guidelines.
“I don't know the answer to why there is no enthusiasm, why it isn’t a health priority.
I would have thought, you see, that 130,000 people mattered.”
Leading gynaecologist Mike Bush says he’s frustrated with the lack of support and funding, for a disease that affects 10 per cent of the country’s female population.
“New Zealand has always found it very hard to think of this as something worth putting money into.”
The Ministry of Health says DHBs are encouraged to familiarise themselves with the guidance and incorporate it into care.
But those in the sector are asking for more.
“We want help with getting these guidelines seen by all clinicians that are relevant, so that they take them on board and start to prioritise management of endometriosis,” endometriosis specialist Mike East said.
“If you can have an early diagnosis and implement early management, you may prevent progression and prevent the point of ever needing surgery.”
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