Around 2018, she attended a school talk on endometriosis awareness, where she learned about the different symptoms – and realised she ticked every box.
Endometriosis is a chronic, incurable disease where tissue similar to the uterine lining grows outside the uterus, with symptoms including pelvic, period and back pain, abnormal bleeding, and bowel issues. It can also affect fertility.
“I was like, ‘That’s what I have, surely’,” Funnel recalls.
“Previously, I’d been to Middlemore [Hospital] so many times with intense pain, and they’d just given me pain relief. One time it was so bad, I was in agony, that we actually called an ambulance.”
On that occasion, thinking she had appendicitis, doctors decided to operate and found that wasn’t the case.
“They discharged me, still in agony.”
That’s when Funnel decided to see a private gynaecologist.
“The second I told him all about it, he was like, ‘I think you do have it [endo]’.”
As it turned out, there was something wrong with her appendix after all. As well as her bowel, it had been “completely twisted and ruptured” by endometriosis lesions, a laparoscopy showed.
Since her initial surgery in 2019, the 22-year-old has undergone multiple operations – she estimates one a year – to remove recurring endometrial tissue, and has tried different medications to manage the pain, including the contraceptive pill and Zoladex, an injection often used to treat prostate and breast cancer.
“That had really bad side effects – I had hot flushes for about six months after I came off it, so I didn’t really want to go back onto that.”
Grace Funnel, pictured with her boyfriend Riley Pullar. Photo / Supplied
Since February this year, Funnel has been taking Ryeqo, which is now registered to treat endometriosis in New Zealand.
Ryeqo – relugolix combination therapy – works by reducing oestrogen, the hormone responsible for endometriosis symptoms, and adding back in oestradiol and norethisterone acetate to help balance hormones.
“I had surgery in August. So whether it’s helping or whether it’s the surgery that’s helped, it’s a bit hard to know at the moment,” Funnel says.
“I guess time will tell.”
However, she’s grateful to have access to a non-invasive form of pain management that hasn’t triggered any side effects in her case.
The medication is available through private prescription and is not yet funded in New Zealand. The current price is a bit “crazy”, she admits, at around $350 a month on a prescription.
Funnel has asked if her insurance would cover that cost, and has been told no – because it’s seen as a form of contraception.
“So it’s a bit tricky, but if it stops me from having a surgery nearly every year, then it’s worth it,” she says.
For others who may be able to relate to her experience, she wants to encourage them not to give up.
“Keep trying to find a doctor that’s going to listen and help you and keep fighting for answers, because I got told all the time that it was all in my head and there was nothing wrong.”
Auckland gynaecologist and fertility specialist Professor Neil Johnson says it’s a “positive step in the right direction” to have Ryeqo registered for endometriosis in New Zealand.
Professor Neil Johnson is a gynaecologist and fertility specialist and past president of the World Endometriosis Society.
Since 2023, it’s been available to treat uterine fibroids, but it’s been nine years since a new medication has been approved specifically for endometriosis here.
“It’s annoying and frustrating that we don’t get access to the breadth of treatments that one can get elsewhere, Australia being the classic example,” Johnson tells the Herald.
As medical director of Flinders Fertility in South Australia, past board member of Endometriosis New Zealand, and past president of the World Endometriosis Society, Johnson says, “I’m acutely aware of the disparity in availability and funding of treatments for endometriosis.
“It seems to me that we are the poor cousins of Australasia when it comes to drug availability and drug funding.”
The next step, he says, is to see Ryeqo funded by Pharmac.
“It would be absolutely fantastic. It would be wonderful to see policymakers now having a different view on women’s health.”
He estimates 90% of his patients are put off by the price.
“I think for every 10 women that I talk to about this, maybe only one will actually take it because of the expense.”
For those who can afford it, “it’s a small price to pay if you get your quality of life back”, he says.
“It’s clearly been shown to be an effective medical treatment option for suppressing endometriosis-related pain, for improving quality of life around that, and not just suppressing periods … it suppresses non-menstrual pelvic pain. It suppresses dyspareunia, which is pain with sex, and it reduces the amount of [pain] medication that one has to take.”
Because it is a combination therapy, it “sets the oestrogen level at the sweet spot”, he explains.
“If you were to take relugolix alone, it would cause complete hormonal suppression and induce menopause … although it causes that suppression, the amount of add-back hormone isn’t sufficient to attenuate the treatment effect, but it is enough to prevent women from getting significant side effects.”
In a randomised trial, women on the placebo had a similar side effect profile to the women on Ryeqo, he says.
“I think that tells us that it’s not a big cause of adverse low oestrogen effects or significant side effects. We’ve got two-year data that’s very reassuring with regards to bone density and tolerance and absence of side effects, as well as maintained effectiveness.”
He says Ryeqo could be something women could take long-term to help preserve their fertility, by preventing endometriosis progression.
CEO of Endometriosis New Zealand Tanya Cooke said in a statement, “New Zealanders living with endometriosis have long faced a limited range of treatment options.
“To provide truly effective care, we must ensure equitable access to the full spectrum of evidence-based therapies.
“The availability of new treatment options is really positive for the more than 120,000 New Zealand women, girls and those assigned female at birth navigating this condition.”
Endometriosis New Zealand spokesperson Dr Michael Wynn-Williams previously warned that the current guidelines for treating the condition in Aotearoa are outdated.
New guidelines developed by the Royal Australian and New Zealand College of Obstetricians and Gynaecologists (RANZCOG) are being introduced in Australia.
“RANZCOG’s new guideline reflects the latest evidence and provides clear recommendations for early diagnosis, as well as first-line hormonal treatment to be run in parallel with diagnostic investigations,” Wynn-Williams told RNZ at the time.
“These are crucial to reducing the delays in diagnosis and treatment that too many patients still experience.”
Bethany Reitsma is a lifestyle writer who has been with the NZ Herald since 2019. She specialises in all things health and wellbeing and is passionate about telling Kiwis’ real-life stories.