“No typical person”: Menopause registry to address hidden condition

A new menopause and perimenopause registry aims to address the lack of knowledge about the biological changes affecting millions of Australians.

Associate Professor Erin Morton from Flinders University created the registry to collect community data on the impact of menopause and perimenopause in the community, the range of symptoms and people’s experiences, including treatment.

Menopause and perimenopause remain a “fairly hidden” conditions, Morton says.

As well as collecting information, the registry called VITAL – available here and launching in time for World Menopause Day on 18 October – aims to identify priority areas for research and improve practical outcomes.

Menopause occurs when no further eggs are released from a person’s ovaries (defined as occurring on the day 12 months after the last period), Morton explains.

Perimenopause is the phase leading up to this point, often starting at 40 – 59 years old, and lasting about 4 years (on average) before menopause kicks in. 

Morton says there can be a wide range of perimenopause symptoms related to declining estrogen. These can include erratic periods, hot flushes, mental health issues, difficulty sleeping, changes in hair and skin. 

Many aspects are unpredictable. “There really is no typical person when it comes to something as wide-ranging as perimenopause,” she says.

She says three-quarters of those experiencing perimenopause will have symptoms. “Of those, a third will have symptoms so severe that it actually significantly impairs their life,” Morton says. Many are undiagnosed or misdiagnosed and go untreated. 

Perhaps unusually, the researchers are also inviting participants to provide feedback on the survey questions.

Morton says that’s important, because it is a growing area of research they want to make sure the survey isn’t limited or biased by the currently available knowledge.

“This can affect everybody born with ovaries. So, we want to keep our minds open,” she says.

Everyone with an experience of perimenopause or menopause is invited to join the registry, particularly those aged 40 to 59 most likely to be affected.

But Morton adds, “I’m also interested in husbands, work place colleagues, in daughters or sons. We want opinions from everyone. Because it affects half the population.”

The registry only has 2 mandatory questions, so its up to people to decide how much information they want to give, she says.

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