Women with pelvic pain say some hospitals are declining GP referrals.
The President of the World Endometriosis Society says New Zealand is lagging behind other countries when it comes to its investment in endometriosis.
It comes as Newshub has received many messages from women who say they have had their GP referrals declined by hospitals around New Zealand.
"The bar seems to be very high for women to be able to be even seen by the District Health Boards. Women are actually being refused referral, appropriate referral to the DHBs," says Professor Neil Johnson, president of the World Endometriosis Society.
Endometriosis is a painful inflammatory condition that occurs when tissue similar to the lining of the uterus is found in places outside of the uterus. It's a progressive and chronic condition which means it's long-lasting and gradually gets worse. It can affect women of all ages including teenagers.
It affects roughly 10 percent of Kiwi women with symptoms including period pain, pelvic pain and sub-fertility or infertility.
Canterbury District Health Board has confirmed that some patients with pelvic pain are having their GP referrals declined.
A spokesperson said: "Demand for our services is above our current capacity to see patients. Despite current limitations, we believe we provide a high level of service to women with endometriosis."
Counties Manukau Health says "some women do not meet the threshold to be seen or for treatment".
Waitemata DHB says nearly all women referred to Waitemata's Gynaecology Service for assessment are seen.
Hutt Valley DHB believes "patients receive the same level of care in the public health system as they would in private care".
CEO of Endometriosis New Zealand Deborah Bush has campaigned for women with the condition for over three decades.
She believes endometriosis is a "health crisis" in New Zealand.
"I say health crisis because 130,000 females in this country have endometriosis. We need to stop thinking about endometriosis as a women's issue. It affects the bottom line of productivity and absenteeism in this country. What I'm seeing now is much more the impact on mental health and mental wellbeing," she says.
"A decline letter for somebody who is unable to work, or unable to go to school, whose life is totally compromised, who faces possible fertility issues, whose relationship is breaking up.
"You get a decline letter because you're probably not serious enough and we're putting you back to the care of your GP. GPs in all fairness have probably exhausted everything that they have been able to do."
Professor Johnson says the Government "absolutely" needs to put more money into endometriosis as the investment has been "suboptimal".
"New Zealand used to lead the world in endometriosis advocacy. Now we've been overtaken by Australia whose government has made a significant investment. So far Labour hasn't got this right, the Government needs to move with it," he says.
A study in Australia found endometriosis could be costing the country as high as $9.7 billion each year.
After acknowledging that the condition causes a substantial health burden, in 2018 the Australian Federal Government created a 'National Action Plan for Endometriosis' and committed more than $14 million towards research, improving diagnosis and treatment options as well as increasing awareness of the condition among GPs.
In summarising the plan, Health Minister Greg Hunt said he listened to stories of women who had suffered in silence for so long.
"I issued an apology on behalf of the Australian parliament and medical system for the historic failures that sufferers of endometriosis endured."
He described the 'National Action Plan for Endometriosis' as a "first-ever national approach to combat this insidious condition".
Dr Michael Wynn-Williams is an expert advanced laparoscopic gynaecologist. He's recently returned home to New Zealand after two decades working overseas - many of which were in Australia.
He believes New Zealand needs to follow Australia by also developing an action plan for endometriosis.
"I think New Zealand needs a strategic action plan for endometriosis and that involves funding for research, public awareness, education, comprehensive patient guidelines and development of centres of excellence that meet the often complex needs of all women in New Zealand - whether they're city-based or in the far rural reaches," he says.
Dr Michael Wynn-Williams says the treatment of the disease can be postcode dependent.
"There are centres in New Zealand that won't see women with pelvic pain at the moment unless there's a finding of endometriosis because they're under-funded and under-resourced," he says.
"We also need further research on the incidence and the effects that endometriosis have on the lives of Maori and Pasifika women in New Zealand as currently there's minimal data."
He says the condition is costing women billions.
"If we extrapolate the Australian data and applied it to New Zealand, it's costing women who suffer with endometriosis an estimated total of $2b a year in lost productivity and personal healthcare costs and that's not even including the cost to our public health system and taxpayer," says Dr Wynn-Williams.
Professor Johnson says the Government needs to act on the issue.
"I would love to see this Government under Jacinda Ardern, who enjoys appropriately such a high measure of respect internationally, really prioritise endometriosis," he says.
"There are few medical conditions that significantly disrupt the lives of 10 percent of females in this country and it just makes no sense to ignore it."