Endometriosis – is often referred to as a silent disease or a hidden epidemic, and yet it affects more than 128,000 women in NZ. 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’.
What is Endometriosis?
The endometrium is the tissue that lines the uterus. Each month or menstrual cycle this tissue builds up and then, if no pregnancy occurs, it is shed causing normal bleeding experienced as a period.
Endometriosis is when fragments of endometrial like tissue grow in places outside the uterus. These growths or implants or lesions, known as endometriosis, are usually found in the pelvic region on places such as the pelvic lining (peritoneum), ovaries, bowel and pouch of Douglas (cul de sac).
Endometriosis New Zealand
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 through to being diagnosed; misdiagnosis is still commonplace; and treatment is often inadequate. Even today, the disease is still poorly understood and cause is still unknown, and yet endometriosis is estimated to cost more than NZ$523 million each year in lost workplace productivity through absenteeism.
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, interactive, 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 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 its new website primarily developed for teens with endometriosis, but is easy for everybody to access. It has the latest on symptoms, diet 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.
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.