Endometriosis sufferers face significant diagnostic delays

By Larissa Howie, 1News Producer

Originally published on 1 News

28th March 2022

Story on Monday’s 6pm news. Watch the video below.

Suffering with endometriosis for 20 years, Jess Sandoval knows what it’s like to live with agonising pain.

“All of a sudden it feels like someone’s come at you and is stabbing knives into you, but you’ve still got to stand there and smile,” she told 1News.

She first started experiencing painful periods when she was 14. But, it wasn’t until a miscarriage in her early 20s when she finally received a formal diagnosis for endometriosis.

“If that hadn’t happened I probably would have gone years and years and years before anything was done and it was just by chance I got to see that doctor who had knowledge of this,” says the Wellington mum.

Sandoval was left unable to work due to her symptoms, and says her relationships have also suffered.

Endometriosis is a debilitating condition, where tissue from inside the womb grows in other places of the body causing intense pain. It affects one in 10 people born female.

New landmark research by the Medical Research Institute of New Zealand has revealed people suffering from the condition are facing major diagnostic delays.

Lead of the study Dr JordanTewhaiti-Smith says it takes on average, 8.7 years from onset of symptoms to be formally diagnosed.

“If you don’t have a diagnosis of endo you’re sort of in limbo and have to soldier on and keep suffering,” he says.

He believes part of the cause of delays is the “she’ll be right” attitude toward painful periods in New Zealand.

“There’s a culture of menstruation in our country that painful periods should just be a normal thing, and so people don’t complain.”

Founder of endometriosis New Zealand Deborah Bush says while the research shows a slight improvement on wait times in recent years, it is still not good enough.

“It’s up to the Government to acknowledge this as a serious public health issue and do something about it,” she says.

The Ministry of Health says it acknowledges the impact any length of diagnostic delay has on a sufferer’s quality of life, and is encouraging healthcare providers to use guidelines published in 2020 to improve early diagnosis.

However, Bush says there needs to be funding allocated to help ensure the guidelines are implemented by health professionals.

“We could be doing it much better by simply implementing the clinical pathway for the treatment and management of endometriosis launched in 2020.

“It serves no purpose sitting on a website, not being implemented.

We have edited this article with the correct definition of endometriosis, and we are aware the published article is incorrect.

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

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