{"id":76371,"date":"2025-10-13T20:16:08","date_gmt":"2025-10-13T20:16:08","guid":{"rendered":"https:\/\/www.newsbeep.com\/nz\/76371\/"},"modified":"2025-10-13T20:16:08","modified_gmt":"2025-10-13T20:16:08","slug":"endometriosis-breakthrough-what-a-new-treatment-could-mean-for-kiwis-living-with-the-disease","status":"publish","type":"post","link":"https:\/\/www.newsbeep.com\/nz\/76371\/","title":{"rendered":"Endometriosis breakthrough: What a new treatment could mean for Kiwis living with the disease"},"content":{"rendered":"

Around 2018, she attended a school talk on endometriosis<\/a> awareness, where she learned about the different symptoms \u2013 and realised she ticked every box.<\/p>\n

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.<\/p>\n

\u201cI was like, \u2018That\u2019s what I have, surely\u2019,\u201d Funnel recalls.<\/p>\n

\u201cPreviously, I\u2019d been to Middlemore [Hospital] so many times with intense pain, and they\u2019d just given me pain relief. One time it was so bad, I was in agony, that we actually called an ambulance.\u201d<\/p>\n

On that occasion, thinking she had appendicitis, doctors decided to operate and found that wasn\u2019t the case.<\/p>\n

\u201cThey discharged me, still in agony.\u201d<\/p>\n

That\u2019s when Funnel decided to see a private gynaecologist.<\/p>\n

\u201cThe second I told him all about it, he was like, \u2018I think you do have it [endo]\u2019.\u201d<\/p>\n

As it turned out, there was something wrong with her appendix after all. As well as her bowel, it had been \u201ccompletely twisted and ruptured\u201d by endometriosis lesions, a laparoscopy showed. <\/p>\n

Since her initial surgery in 2019, the 22-year-old has undergone multiple operations \u2013 she estimates one a year \u2013 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. <\/p>\n

\u201cThat had really bad side effects \u2013 I had hot flushes for about six months after I came off it, so I didn\u2019t really want to go back onto that.\u201d<\/p>\n

\" Grace Funnel, pictured with her boyfriend Riley Pullar. Photo \/ Supplied<\/p>\n

Since February this year, Funnel has been taking Ryeqo, which is now registered to treat endometriosis in New Zealand.<\/p>\n

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.<\/p>\n

\u201cI had surgery in August. So whether it\u2019s helping or whether it\u2019s the surgery that\u2019s helped, it\u2019s a bit hard to know at the moment,\u201d Funnel says.<\/p>\n

\u201cI guess time will tell.\u201d<\/p>\n

However, she\u2019s grateful to have access to a non-invasive form of pain management that hasn\u2019t triggered any side effects in her case.<\/p>\n

The medication is available through private prescription and is not yet funded in New Zealand. The current price is a bit \u201ccrazy\u201d, she admits, at around $350 a month on a prescription.<\/p>\n

Funnel has asked if her insurance would cover that cost, and has been told no \u2013 because it\u2019s seen as a form of contraception.<\/p>\n

\u201cSo it\u2019s a bit tricky, but if it stops me from having a surgery nearly every year, then it\u2019s worth it,\u201d she says.<\/p>\n

For others who may be able to relate to her experience, she wants to encourage them not to give up.<\/p>\n

\u201cKeep trying to find a doctor that\u2019s 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.\u201d<\/p>\n

Auckland gynaecologist and fertility specialist Professor Neil Johnson says it\u2019s a \u201cpositive step in the right direction\u201d to have Ryeqo registered for endometriosis in New Zealand.<\/p>\n

\" Professor Neil Johnson is a gynaecologist and fertility specialist and past president of the World Endometriosis Society. <\/p>\n

Since 2023, it\u2019s been available to treat uterine fibroids, but it\u2019s been nine years since a new medication has been approved specifically for endometriosis here.<\/p>\n

\u201cIt\u2019s annoying and frustrating that we don\u2019t get access to the breadth of treatments that one can get elsewhere, Australia being the classic example,\u201d Johnson tells the Herald.<\/p>\n

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, \u201cI\u2019m acutely aware of the disparity in availability and funding of treatments for endometriosis.<\/p>\n

\u201cIt seems to me that we are the poor cousins of Australasia when it comes to drug availability and drug funding.\u201d<\/p>\n

The next step, he says, is to see Ryeqo funded by Pharmac.<\/p>\n

\u201cIt would be absolutely fantastic. It would be wonderful to see policymakers now having a different view on women\u2019s health.\u201d<\/p>\n

He estimates 90% of his patients are put off by the price.<\/p>\n

\u201cI think for every 10 women that I talk to about this, maybe only one will actually take it because of the expense.\u201d<\/p>\n

For those who can afford it, \u201cit\u2019s a small price to pay if you get your quality of life back\u201d, he says.<\/p>\n

\u201cIt\u2019s 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.\u201d<\/p>\n

Because it is a combination therapy, it \u201csets the oestrogen level at the sweet spot\u201d, he explains. <\/p>\n

\u201cIf 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\u2019t sufficient to attenuate the treatment effect, but it is enough to prevent women from getting significant side effects.\u201d<\/p>\n

In a randomised trial, women on the placebo had a similar side effect profile to the women on Ryeqo, he says.<\/p>\n

\u201cI think that tells us that it\u2019s not a big cause of adverse low oestrogen effects or significant side effects. We\u2019ve got two-year data that\u2019s very reassuring with regards to bone density and tolerance and absence of side effects, as well as maintained effectiveness.\u201d<\/p>\n

He says Ryeqo could be something women could take long-term to help preserve their fertility, by preventing endometriosis progression.<\/p>\n

CEO of Endometriosis New Zealand Tanya Cooke said in a statement, \u201cNew Zealanders living with endometriosis have long faced a limited range of treatment options.<\/p>\n

\u201cTo provide truly effective care, we must ensure equitable access to the full spectrum of evidence-based therapies.<\/p>\n

\u201cThe 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.\u201d<\/p>\n

Endometriosis New Zealand spokesperson Dr Michael Wynn-Williams previously warned that the current guidelines for treating the condition in Aotearoa are outdated<\/a>.<\/p>\n

New guidelines developed by the Royal Australian and New Zealand College of Obstetricians and Gynaecologists (RANZCOG) are being introduced in Australia.<\/p>\n

\u201cRANZCOG\u2019s 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,\u201d Wynn-Williams told RNZ at the time. <\/p>\n

\u201cThese are crucial to reducing the delays in diagnosis and treatment that too many patients still experience.\u201d<\/p>\n

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\u2019 real-life stories.<\/p>\n","protected":false},"excerpt":{"rendered":"Around 2018, she attended a school talk on endometriosis awareness, where she learned about the different symptoms \u2013…\n","protected":false},"author":2,"featured_media":76372,"comment_status":"","ping_status":"","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[5],"tags":[59575,85,1558,33737,138,1239,124,7191,6435,59573,1888,2082,807,4188,29391,117,111,139,37968,69,15265,59574,1361,223,2766,6923,102,1530,80],"class_list":["post-76371","post","type-post","status-publish","format-standard","has-post-thumbnail","category-business","tag-59575","tag-australia","tag-been","tag-breakthrough","tag-business","tag-condition","tag-could","tag-disease","tag-does","tag-endometriosis","tag-first","tag-for","tag-kiwis","tag-living","tag-mean","tag-new","tag-new-zealand","tag-newzealand","tag-nine","tag-nz","tag-registered","tag-specifically","tag-that","tag-the","tag-treatment","tag-what","tag-with","tag-years","tag-zealand"],"_links":{"self":[{"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/posts\/76371","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/comments?post=76371"}],"version-history":[{"count":0,"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/posts\/76371\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/media\/76372"}],"wp:attachment":[{"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/media?parent=76371"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/categories?post=76371"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/tags?post=76371"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}