“There are two factors, with the patients themselves and healthcare. Endometriosis is a silent disease, so many people think it is normal to have a painful period that stops you from doing what you normally do,” says Dr. WynnWilliams [3]. Contributing factors that delay a diagnosis on behalf of the patient are patient-defined factors. These may include awareness and understanding of what reproductive diseases are, normalisation of abnormal symptoms, and genetic components. There are significant studies linking endometriosis with hereditary factors, making it easier for families to normalise the symptoms [6]. If your immediate family has endometriosis, you are 7-10 times more likely to be diagnosed [7]. This disease is incredibly common, and many women live their lives undiagnosed.

“Not talking about periods is a big reason, although this is improving and changing. For a long time this wasn’t talked about,” says Dr. Wynn-Williams [3]. There is still a long way to go with improving our attitudes towards periods and reproductive health, it’s conversations that need to happen with ourselves, our whanau, our friends, and our communities.

“How many other girls did you know who were sick? There was no one else like me. I felt like it was my fault for being sick,” says Meg. Many girls still don’t talk about periods, and when we do, the negative symptoms are normalised. Often, sympathy for the cramps we all experience is the first reaction you will receive when talking about periods. Women are often told they are just unlucky to have bad periods, and that this runs in the family. The monthly pain, sickness, and agony we experience is something we are just taught to deal with.

One factor contributing to the delay is access to primary healthcare — “We know that people really struggle to get access to the right healthcare — particularly Māori and Pasifika patients,” says Dr. Wynn-Williams [6]. Another significant issue is the difficulty of talking with healthcare providers, and women feeling like their own concerns are minimised by professionals.

“This is a silent disease. There is a stigma in talking about the symptoms, and people normalising the pain,” Dr. Wynn-Williams explains. [3]. Access to help is another major setback for this disease with limited beds, doctors, and diagnostic tools. Many hospitals, medical practices, and reproductive health services do not have access to laparoscopic surgeries — the only way to diagnose endometriosis formally.

“I was told I was too young. I always brought it up to my GP but she dismissed me. I looked it up myself when I was 13 and went to family planning telling them. They immediately told me I was a classic case,” says Meg [4]. How could a qualified doctor not take a patient with clear symptoms seriously? Meg’s story is also not an isolated incident, with one study finding 90% of their participants who did have endometriosis felt disbelieved or dismissed at least once a month by either family members or health professionals [7]. This figure was also accompanied with the finding that 75% of the almost 2,000 participants were misdiagnosed with another condition (physical or mental), before being correctly diagnosed with endometriosis [7].

Furthermore, access to contraception, diagnostic investigations (limited in the public system), and access to secondary care (hospitals) were exacerbated by Covid-19. There are a lot of factors related to the delay, making it a complex issue to tackle.