Endometriosis in NZ - are we doing enough?

While there are some theories about the cause of the disease, nobody really knows why it happens.

The only way to diagnose endometriosis is through a surgical procedure called a laparoscopy.

And although it can be removed, often it can just as easily come back.

EndometriosisNZ says the disease is estimated to affect 176 million girls and women worldwide during their reproductive years. This means that if you put everyone affected by endometriosis in one country, it would be the eighth largest country in the world.

 In New Zealand alone, statistics show that 120 thousand women – that’s roughly one in ten – are affected by endometriosis. However, this research is almost ten years old, in which time the New Zealand population has increased by almost 600 thousand.

The CEO of EndometriosisNZ, Deborah Bush, believes the figures could be much higher.

Bush says funding for the disease in New Zealand is a major concern.

She says a crucial area where funding is lacking is the clinical pathway for diagnosing endometriosis.

On average, it takes more than eight years for women with the disease to get a diagnosis.

EndometriosisNZ first approached the Ministry of Health in 1999 and has been working since to maintain a relationship with the government.

But Bush says it isn’t enough.

“There is an acceptance that we’re looking at a major public health issue, that the clinical pathways fall well short of meeting the needs of New Zealanders and yet there isn’t any ministry money.”

In 2016, a Minstry-led taskforce was formed to investigate diagnosis and management of endometriosis and pelvic pain. 

But Deborah Bush feels like progress is slow and the Ministry doesn’t care. 

“Even having some money there to help us go to the meetings, to help us do the work between the meetings would be most helpful.”

The Ministry of Health declined a request for an interview but, in a statement, Chief Medical Officer for the Ministry of Health Dr. Andrew Simpson acknowledged that diagnosis was a key issue.

"There is variation in the way this condition is diagnosed and treated around the country, and it is important that there is better consistency in the pathway for these patients."

32-year-old Kristyl Martin has had more 16 laparoscopies since she was 14, and says the lack of understanding amongst doctors is irresponsible.

It's a common misconception that pregnancy is a cure for endometriosis.

"I got told when I was 17 that I needed to have a child and that would be the only way to get rid of my endometriosis and I should get pregnant right now." 

Endometriosis New Zealand’s project co-ordinator, Heather Pearson suggests endometriosis should fall under mental health funding. 

“We have so many girls and women who contact us who are having real issues with mental health because of endometriosis.”

However Simpson says that mental health is in its own category.

“Mental health services are not provided on the basis of what has caused the mental health issue. If someone is struggling with mental health issues because of endometriosis, they would be eligible for mental health services”.

Deborah Bush says another crucial area in need of funding is education.

None of the women I interviewed said there was any education around endometriosis when they were at school, aside from 22-year-old Jess, who is on the waiting list for a diagnostic laparoscopy to find out if she has endometriosis. 

Jess started experiencing pain during her period from the age of 14, but didn’t know what endometriosis was until a presentation at her school called the 'ME' Programme - 'ME' standing for Menstrual Health and Endometriosis - an education programme in New Zealand schools.

But Deborah Bush says education about endometriosis goes beyond teaching in schools. 

“We take a multi-pronged focus to education.”

She says if they are in an area doing the school programme, they’ll also go to youth health clinics and try and meet with GPs. 

“Sometimes I think why go to a school and raise the profile of this with adolescents and then find that they’re meeting the same barriers in trying to access help if we haven’t also provided that to health professionals.”

Kristyl says the lack of education about endometriosis has impacted on her career. She feels like it makes her a liability.

“I’ve done a degree and I was top of my year… but my CV is horrible because I’ve had to take so much time off work and employers don’t understand it.”

Surgery to remove the uterus - a procedure called a hysterectomy - becomes one of the only possibilities to help with pain for many women.

Medical professionals don't usually recommend this if women still want to have children, but sometimes even that isn't an option.

For Sarah, it seemed like her only way out.

"I ended up having a hysterectomy when I was 20 and I couldn't have children after that."

And through it all, she still suffers from the effects of endometriosis today.

While Sarah is on the extreme end of the spectrum, 120 thousand kiwi women still suffer from the disease. 

EndometriosisNZ says if you experience pelvic pain, or think someone you know could be, don't brush it off as nothing.

It could affect you more than you realise.

*Names have been changed to protect the identity of people in the story.