At 31, Kirsty had just been pregnant – but she suddenly faced a ‘brutal’ reality

Kirsty Costa has one word for how it feels to be in your early 30s, trying to start a family, and suddenly being diagnosed with the beginning of menopause nearly 20 years before most women expect it.

“It’s ‘lonely’,” says the Melbourne teacher. Just as her friends were in the first-time baby shower zone, she was reckoning with the possibility her fertile window was closing.

Kirsty Costa was 31 and had just lost a pregnancy when she was told she had gone into early menopause, a condition with which more young women are being diagnosed.Credit: Justin McManus

Costa and her husband were thrilled to be expecting their first baby when she was aged 31, only to lose the pregnancy due to medical complications. Months later, Costa’s periods had still not returned and she was feeling strangely hot.

“It got to the three-month mark and I went to see the GP, and said, ‘[My body] doesn’t feel right’, and was told it was just grief, anxiety and ‘leftover pregnancy hormones’,” says Costa, who is now in her 40s.

“It took me four GPs to get to the point where they agreed to give me a blood test [for hormone levels], and it took me another three months to get to see a specialist.”

When she did, the specialist entered with the results and announced, “Well, it’s definitely early menopause.”

‘I remember collapsing under the washing line with a basket full of washing, and just being devastated.’

Kirsty Costa

“My GPs had been placating me, saying it was just pregnancy hormones; that was a real shock for my husband and I,” Costa says. “I wasn’t mentally prepared to hear that diagnosis, and it was a pretty brutal way to hear it when we’d just been pregnant.”

Soon after, as the couple planned to start IVF, Costa called her fertility specialist’s office hoping to hear results from an AMH ovarian reserve test, which tests for cells from developing egg sacs (follicles).

When a clinic administrator found the results and informed Costa, she was blindsided: “She said, ‘Oh yeah, I’ve got them here. You don’t have any eggs.’

“I remember collapsing under the washing line with a basket full of washing, and just being devastated,” she says.

Practitioners are being given new guidelines for dealing with premature ovarian insufficiency. Credit: iStock

The distress of being in “medical limbo” for months to get symptoms investigated prompted Costa to advocate for the increasing number of women – sometimes as young as their 20s – diagnosed with premature ovarian insufficiency (POI).

Her diagnosis experience has now helped to inform new guidelines for practitioners.

Much remains unknown about why a now-estimated 12 per cent of women experience loss of their ovarian function under the age of 45, though some do so through cancer treatment or preventive surgery if they have genes predisposing them to ovarian cancer.

The condition is associated with infertility, psychological distress and increased risk of osteoporosis, cardiovascular disease, mortality, dementia and cognitive dysfunction – some of which can be mitigated with hormone therapy if treating doctors are aware of recommendations about this.

Dr Elena Tucker, of the ovarian development and disease team at the Murdoch Children’s Research Institute, said more than 100 different genes could influence ovarian function, most of which have not been studied.

This leaves about 75 per cent of women who experience POI with no answers as to what caused it.

“Part of it is the genetics are complicated: so many genes, processes and pathways are necessary for ovaries to work properly, it’s very broad,” says Tucker.

Recent advances in gene-sequencing technology have been incorporated into medical care of many disorders, but this is yet to happen with POI.

“I’m not sure why POI is languishing; I think it’s been underappreciated, the impact genetic testing can have on patients and families,” she said.

“I don’t think clinicians have realised that if you identify a cause, you help families by being able to predict what other conditions [may be linked with that gene] and offer surveillance and hopefully prevention for other conditions.”

Associate Professor Amanda Vincent, of Monash University’s Centre for Research Excellence in Women’s Health in Reproductive Life, co-chaired an international team of researchers who have written new guidelines to help identify and manage patients with POI.

During three years of research to prepare the guidelines, the group discovered premature ovarian insufficiency was far more common than had previously been understood.

On Tuesday, their recommendations will be published in three medical journals.

“The good news is that if you take hormone replacement therapy you’re replacing the oestrogen lost when the ovaries are not working, and if you do that until the age of usual menopause, it decreases the risk [of other health complications],” Vincent said.

“But many people, both doctors and women [patients], don’t think of POI when their periods stop, they think they’re too young for menopause. We know there’s often a delayed diagnosis because it’s not on their radar.”

Vincent said the team hoped the guidelines would improve the diagnostic journey for patients and help practitioners understand that hormone therapy needed to start promptly and continue for far longer than the standard five years.

“You’ve got someone who potentially needs hormone therapy for 25 years ... and these women often need higher doses because younger women naturally have more oestrogen in their bodies,” she said.

Kirsty Costa, who as well as her teaching work hosts Australia’s most popular nature podcast, Weekend Birder, said she eventually received hormone therapy – “after the five most challenging years of my life” – and it had dramatically improved her wellbeing.

She spoke in October at the World Congress on Menopause in Melbourne, alongside Vincent and Tucker.

Costa hopes the new guidelines will help other women make decisions, based on good information, and receive their diagnoses faster and in a gentler way, with good psychological support.

“I hope it will help with women advocating for themselves,” she says. “And being believed when they say things are not right.”

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