Endometriosis is a whole-body disease affecting one in nine people. Photo / Getty Images
Endometriosis is a whole-body disease affecting one in nine people. Photo / Getty Images
This month is Endometriosis Awareness month. It’s a condition endured by and is suspected to contribute to issues such as truancy, infertility, career inequality, whānau relationships and mental illness. Reporter Jaime Lyth talks to an expert about why more support is needed for those with the condition.
Endometriosis affects many women, girls and those assigned female at birth, but is still a largely “invisible illness” with significant diagnostic delays in Northland and across the country.
Northlanders suffering from endometriosis who are not deemed clinically urgent are waiting on average four months for a first appointment with a specialist (gynaecology), while wait times for non-urgent planned gynaecology surgery exceed a year.
Endometriosis is a common chronic long-term inflammatory condition affecting one in nine women, but it can occur in anyone who has a uterus, including transgender, nonbinary and intersex people.
Te Whatu Ora Obstetrics and Gynaecology consultant Dr Jennifer Blasingame said endometriosis is mainly managed in general practice and referrals to specialists or the hospital are made if there are “uncontrolled symptoms”.
“We are working hard to reduce waiting times for gynaecology specialist appointments and elective surgeries, but acknowledge that some women do wait longer than we would like,” Blasingame said.
Blasingame said delays in appointments may be due to a patient’s medical complications or transport issues.
Insight Endometriosis manager and educator Annette Evans said research showed on average those with endometriosis will visit five GPs over more than eight years before they are diagnosed.
“Despite being common, endometriosis can be very isolating, and so being able to chat with others can be very validating.”
Evans said most people with endometriosis are not getting diagnosed, which often comes down to not recognising the symptoms and delays in the health system.
“I do get phone calls [and Instagram messages] from Northlanders, a lot of younger people who would be reluctant to share their story.
“And they’re the ones that are typically being seen by doctors and so on but they are still not getting the care that they need.”
Evans said sometimes those in pain were told they were “making up stories to get out of class”.
“That’s pretty sad when students are scared to go to a sick bay because they’ll get a hard time.”
The disease could be impacting Northland’s school truancy rates, according to a landmark endometriosis study released last year. Around 27 per cent of New Zealand students report they sometimes or always miss school due to menstruation symptoms.
An Aotearoa New Zealand survey of the impact and diagnostic delay for endometriosis and chronic pelvic paingathered the experiences of 800 people with endometriosis and chronic pelvic pain, a first for New Zealand.
“A large number don’t even have a GP, so they’re never going to get diagnosed,” Evans said.
Evans noted the condition gets much less attention than other conditions despite the wide-ranging negative impacts on a person’s education, career, sex life, whānau relationships and mental health.
“But for New Zealand, there’s 180,000 women and girls [with endometrosis], which compared with dementia it’s 70,000, so it’s a massive problem,” she said.
Charities such as Insight Endometriosis offer webinars and in-person meetups to help people self-advocate and navigate the condition because of the lack of investment.
What is endometriosis?
The endometrium is the name of the tissue that lines the uterus (womb). Endometriosis is a condition where tissue similar to the lining of the uterus (womb) is found in places outside the uterus, such as on the ovaries or bladder.
Laparoscopic surgery, a keyhole surgery performed under general anaesthesia, is the only way to definitively diagnose endometriosis. The surgeon removes any endometriosis found during the surgery.
For people who are asymptomatic, difficulties getting pregnant may be the first sign of undiagnosed endometriosis.
Symptoms associated with endometriosis include, but are not limited to:
• Painful periods (The most common symptom)
• Bowel problems
• Pain during or after sexual intercourse
• Abnormal menstrual bleeding
• Pain between periods e.g. with ovulation or intermittently throughout the month
• Fatigue, tiredness and low energy
• Bladder troubles like pain or frequent urination
