International Endometriosis Awareness Month this March will be a time to celebrate the achievements Endometriosis NZ has made in improving the health outcomes for the one in 10 New Zealand girls and women with endometriosis, and address endometriosis as a continuing major health crisis.
Endometriosis NZ (ENZ) CEO Deborah Bush says they will attend an all party parliamentary meeting in March to talk about the new clinical pathway it has been working on with its medical colleagues and the Ministry of Health since 2015.
“We will explain the trauma, anguish, and insidious nature of this horrible disease that affects more than 120,000 New Zealanders,” she says.
“ The clinical pathway must change as there is still an unacceptable diagnostic delay of eight years on average from when girls and women first present with symptoms.”
She says those with symptoms are presenting multiple times to their GP and often their story and their symptoms are not being heard, or not taken seriously.
“It’s often dismissed as ‘just period pain’ but for those who experience the significant and distressing symptoms, it can mean time off school or work, not being able to participate in regular activities, and even more than that, not being able to do normal everyday human things like going to the toilet pain free.”
Endometriosis NZ will hand over a poignant letter to Jacinda Ardern and others with an interest in women’s health to explain the enormity of endometriosis and the impact it has on individuals, the health burden, the human and social costs, and the cost to the country.
The letter will include important facts like 27% of school students in New Zealand are having absences most months due to significant menstrual disturbance.
Endometriosis Awareness Month will include high tea fundraisers across New Zealand for any group of friends or colleagues to register and participate in raising awareness of endometriosis and funds for Endometriosis NZ to provide its services.
ENZ CEO Deborah Bush, left, was a key speaker at last year’s European Congress on Endometriosis, pictured here with, from left, Professor Neil Johnson – president of the World Endometriosis Society (WES), Professor Ivo Brossens – Belgium, and Lone Hummelshoj – chief executive of WES. And Top team: Endometriosis New Zealand staff, from left, Tayla Gray, Heather Pearson, and CEO Deborah Bush.
Following on from its 2018 social media campaign, Endometriosis NZ will also be launching a new influencer, Jean, now in her mid-eighties, who has lived a life with endometriosis.
“Jean will be an integral part of our education programmes,” Deborah says. Endometriosis NZ’s me™ (menstrual health and endometriosis) programme has been running in New Zealand schools for 21 years.
It was recently adopted by the World Endometriosis Society as the education preference for the world and in 2018 was included by the Australian Government in its National Action Plan.
“The programme is funding reliant and therefore only some regions of New Zealand currently have access. This must change given the high incidence of the disease in youth. We have a lot to celebrate, but a monumental kaupapa ahead.”
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