Endometriosis – is often referred to as a silent disease or a hidden epidemic. The words “hidden” and “silent” are aptly, though unfortunately, used because just like our foremothers, symptoms relating to menstrual dysfunction or those which involve the bowel, sexuality, fertility and general malaise are frequently things women have learnt to ‘put up with’.

Endometriosis New Zealand (ENZ) is assertive in its approach to change attitudes and has developed programmes directly addressing the unacceptable statistics relating to endometriosis. For instance, it still takes 8+ years from first presentation to a doctor to be diagnosed, misdiagnosis is still commonplace and treatments are often inadequate. Even today, the disease is still poorly understood and cause is still unknown.

On the bright side, endometriosis can be well treated and managed. We are fortunate in New Zealand to have gynaecologists working privately and in some DHBs who specialise in endometriosis. Early management of symptoms and diagnosis is the key to ensuring that quality of life and fertility are not compromised. ENZ has developed the ‘ME’ (Menstrual health and Endometriosis) programme in schools which is a unique and highly credible programme with some outstanding results. The programme is currently offered to schools in Canterbury, Nelson and Marlborough, and it is a major focus to roll the programme out nationally.

ENZ is an organisation with a 23 year history. It is a registered charitable trust formed to provide education, information and support services for girls and women with endometriosis, their partners families and friends. ENZ fosters research and works with doctors and gynaecologists in NZ and around the world to bring about change for those with the disease and those treating it. The organisation relies on grants and donations to provide services. ENZ offers a free phone helpline, patient information packs, programmes in some DHBs, and is lobbying hard for increased awareness and improved services for women and girls with the condition.

ENZ has recently launched its new website primarily developed for teens with endometriosis, but is easy for everybody to access. It has the latest on symptoms and treatment options. It gives self-help advice and management options for those experiencing a compromised lifestyle.

If you, your young teenager or someone in your family, school or workplace has endometriosis or is experiencing symptoms, then get help. You are not alone. Contact ENZ for more information.

Useful Websites

www.endometriosisnz.org.nz

ENZ website focussed upon young women and girls.

www.nzendo.co.nz

Corporate website of the New Zealand Endometriosis Foundation Inc., otherwise known as Endometriosis New Zealand.

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This information was compiled by the Kiwi Families team.

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