On 18 August 2026, the Government finally said out loud
what 120,000 New Zealanders have known for years: an
eight-to-twelve-year wait is a failure of
belief.
Health Minister Simeon Brown and Women’s
Minister Nicola Grigg announced that Health NZ will adapt
the RANZCOG Australian Living Evidence Guideline for use in
New Zealand. The shift will allow GPs to make a clinical
diagnosis based on symptoms, family history and examination,
rather than requiring laparoscopic surgery to confirm it.
For up to 60% of women, low-impact hormonal medication is
effective, and surgery will no longer be the only route to
diagnosis. The guideline is expected to launch in
mid-2027.
It is revolutionary. But a guideline on
paper is not a system.
The announcement followed
sustained pressure from advocates. Endometriosis New Zealand
has been calling the 2020 guideline outdated and urging
adoption of the RANZCOG guideline, “the gold standard”
already implemented across Australia. Endo Warriors Aotearoa
presented a petition to Parliament calling for an
independent review of Aotearoa’s guidelines. The petition
received 5,921 signatures and has now been transferred to
the Health Committee, where it will be formally considered
by MPs.
Their demands are specific: recognise
endometriosis as a chronic, whole-body condition; clear
diagnostic timelines; youth-focused menstrual education;
equal recognition of non-hormonal options like pelvic
physio; publicly funded multidisciplinary care, culturally
safe care and national tracking of delays.
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But behind
these demands are real people. People whose lives have been
shaped and sometimes shattered, by a system that refuses to
believe them.
The Status Quo: A System That Fails to
Believe
For Endo Warriors Aotearoa founder Yessenia
Sandoval, the campaign is deeply personal. She was diagnosed
at 20 following her first miscarriage, after two decades of
chronic pain. Her health journey has included multiple
surgeries, infertility, nine pregnancy losses, eight
miscarriages and an ectopic pregnancy and a hysterectomy in
2019 that led to sepsis and months of
hospitalisation.
“Endometriosis did not just give me
painful periods. It affected my health, my relationships, my
pregnancies, my ability to work and the way I saw myself,”
Sandoval says. “I have experienced nine pregnancy losses. I
have lived through surgeries, hospital stays and more than
20 years of chronic pain. Eventually, my health meant I
could no longer work full time.”
Sandoval founded Endo
Warriors Aotearoa in 2020 to create the information,
practical support, advocacy and community connection she
wishes had been available. “Yet much of what I was
experiencing remained invisible,” she says. Through
initiatives like the Now You See Me photographic exhibition,
Endo Warriors is making those invisible realities visible,
challenging the dismissal, disbelief and isolation that so
many with endometriosis still face.
Sandoval’s story
is not an outlier. It follows a similar trajectory to
countless others. One teenager, diagnosed with an ovarian
cyst in Year 9 and put on the pill, found herself in ED
regularly by age 15 with bloating, nausea, dizziness, and
pain when urinating. She describes working late nights,
becoming depressed, and developing an eating disorder while
healthcare access in her town remained limited. Yet she
began studying automotive engineering, declaring, “I’m the
only girl in the whole school, fighting endometriosis every
day. I have endometriosis, but it doesn’t control
me.”
Others are not so fortunate. Another woman
recalls a male doctor dismissing her pain as “just a bad
period,” telling her to “get over it, take painkillers, and
stop being a wuss.” It took a female doctor in training to
finally say her pain was not normal. A specialist told her
she was too young and suggested the pill, then pregnancy at
16. Surgery later found stage 3 endometriosis. When the pain
returned, she was told it was in her head, until she
discovered the Mirena inserted was too big and causing the
pain.
Venus, 22, describes lying on her bathroom floor
“sweating, shaking, dry-heaving, feeling light-headed, all
because of the excruciating pain my uterus was putting me
through.” An ultrasound could not see endometriosis but
found polycystic ovaries. Six months after an IUD, her pain
returned. Her message is stark: “You don’t need an
‘official’ diagnosis to start treating your
endometriosis.”
Sarah, 39, was finally diagnosed after
a journey more than 20 years long. Her periods had been
heavy and painful since her teens, but an early ultrasound
showed nothing, so “that was the end of any investigation.”
In her late 20s, migraines meant she should never have been
on the pill, yet every doctor offered only more pills, an
IUD, or an implant. By 2022, she experienced constant
bloating, gut issues, and back and leg pain. She was told
she had “exhausted her options” and was depressed. Only
elevated CA125 led to a gynaecologist who listened for five
minutes: “It sounds like endometriosis.” Laparoscopy
confirmed it. “After more than 20 years, someone finally
said it,” Sarah writes. “I’m relieved, but also deeply angry
that it took decades to be heard.”
Tyla’s story shows
what belief changes. Admitted at 16 vomiting and curled in a
ball, she was told it was constipation and sent home. At 19,
a cyst twisted her fallopian tube, and she was offered a
hysterectomy, which she declined. Years later, a surgeon who
listened found endometriosis everywhere: uterus, bowels,
fallopian tubes, ovaries. Now 26 with a daughter, Tyla says,
“Oxford Women’s Health changed my life, and I’m thankful for
spaces like this where our stories can finally be
heard.”
Zen adds the mental health layer: “I had
brought it up with several doctors since I was 16, but as a
woman with diagnosed mental health conditions who advocated
for herself, I was constantly told it was ‘in my head.'”
Surgery at 31 finally removed it.
The Data: What the
Numbers Say, and What They Hide
These stories are not
exceptions. The data confirms they are the rule.
Endometriosis affects around 1 in 10 women and girls in New
Zealand, more than 120,000 people. The most robust New
Zealand data, from the University of Canterbury, shows the
wait is getting longer. A survey of 1,024 patients found an
average delay of 9.7 years, up from 8.7 years in 2022. For
Māori and Pasifika, it is even longer, 11.6 years for
Māori and 12.4 years for Pasifika. Two-thirds of Māori
participants felt treatment was not readily available to
them.
That is not progress. That is a decade of
education, career, relationships, and fertility stolen while
the system shrugs. The invisible costs are everywhere: sick
leave maxed out, NCEA exams missed, sex that hurts, bowels
that do not function, mental health eroded by years of
dismissal.
Why the New Guideline Matters, and Why It
Is Not Enough
The old model required invasive
surgery. The new RANZCOG model recommends non-invasive
imaging such as pelvic ultrasound as first-line, treatment
in parallel with investigation, and surgery only when
clinically indicated.
But the Royal New Zealand
College of General Practitioners warned that the guideline
“will only improve outcomes if it is backed by funding,
equitable access to services and education across the whole
health workforce.” Medical Director Dr Prabani Wood puts it
plainly: “GPs are already diagnosing and treating
endometriosis every day. What we do not have is easy, funded
access to the wider services these women need.”
“A
clinical diagnosis is only useful if the woman can then
access the imaging, the treatment and the support services
she needs. At the moment that depends far too much on where
she lives and what she can afford. That is an equity issue,
and a guideline on its own does not resolve it.”
The
Government’s own officials acknowledge this. Brown called
the change a step toward “earlier recognition, diagnosis,
and treatment.” Grigg acknowledged: “Too many women have
spent years saying something is wrong, only to be told their
pain is normal.” But she also stated that “guidelines alone
will not fix that,” noting that Health NZ is “exploring
additional pain management support.” Exploring is not
funding.
The Call to Action: What We Are
Demanding
The new guidelines mark a beginning, not an
ending. We have seen enough strategies, working groups, and
reports. We need specific, binding, funded actions that will
reshape lives.
A funded National Endometriosis Action
Plan with teeth. Measurable targets. Real accountability.
Australia launched its plan in 2018 and now has 33
endometriosis and pelvic pain clinics, publicly funded MRI
scans, and nationwide education campaigns. Aotearoa can
match that ambition. Our people have waited long
enough.
Equitable access to allied health services,
pelvic physiotherapy, pain management, multidisciplinary
care. Right now, access depends on postcode and privilege.
That is not healthcare. That is geography as
destiny.
Culturally safe care co-designed with Māori
and Pasifika communities. The data is unflinching: Māori
and Pasifika patients wait nearly 12 years on average,
longer than any other group. That is not an oversight. That
is systemic neglect. Solutions must rise from the
communities who bear the heaviest
burden.
Youth-focused menstrual education in schools.
So the next generation does not spend a decade mistaking
endometriosis for “bad periods.” So 12-year-olds are not
dismissed as too young. So they can name their pain before
it names them.
National tracking of diagnostic delays.
What gets measured gets managed. What gets ignored festers.
We need data to drive action and hold the system to
account.
The Government speaks of “exploring” support
and “developing” training. Exploration is not delivery.
Development is not implementation. A clinical diagnosis
unlocks nothing without imaging, treatment, and support.
Without those, a guideline is just words on paper.
We
are calling on the Government to exchange exploration for
action, announcement for implementation, and acknowledgement
for accountability. Because for 120,000 New Zealanders
living with endometriosis, the wait is not merely about
diagnosis. It is about whether this country is finally
prepared to believe
them.
References
Beehive.govt.nz. (2026,
August 18). Ending the decade-long wait for an endometriosis
diagnosis.
Ellis, K., & Wood, R. (2024). A decade
to wait: Update on the average delay to diagnosis for
endometriosis in Aotearoa New Zealand. Australian and New
Zealand Journal of Obstetrics and Gynaecology.
Ellis,
K., Tewhaiti-Smith, J., Munro, D., & Wood, R. (2024).
The perspectives of Māori and Pasifika mate kirikōpū
(endometriosis) patients in Aotearoa New Zealand. Societies,
14(4), 46.
Endo Warriors Aotearoa. (2025). EWA lived
experiences booklet 2025.
Endo Warriors Aotearoa.
(2026). Petition for change / Our
achievements.
Endometriosis New Zealand. (2025). Media
statement – Endometriosis NZ urges adoption of new
clinical guideline.
Royal New Zealand College of
General Practitioners. (2026, August 19). Endometriosis
guideline a welcome step, but GPs need funded pathways to
deliver better care for their
patients.
