Validating women’s pain

Endometriosis affects around 190 million women and people assigned female at birth worldwide. In Australia, more than 11 per cent of women, girls and people assigned female at birth suffer from this chronic condition. Symptoms include pain, cramping, bloating, bladder and bowel problems, mood changes and fatigue. It's a whole-of-body condition that can severely impact almost every aspect of a person’s life.

Unfortunately, there are serious shortcomings in healthcare that are offered to people with endometriosis. Diagnosis is often delayed, taking doctors an average of 6.4 years to recognise symptoms as endometriosis. An invasive surgical procedure called laparoscopy is the only way to obtain a definitive diagnosis. While laparoscopy is covered by Medicare, it is classified as a low-priority elective surgery, which results in long wait times and later diagnosis. Indeed, 65 per cent of endometriosis-related hospitalisations in Australia are either self-funded or funded by private health insurance. The costs of hospitalisations and treatments can run into the thousands, especially for migrant and refugee people on temporary visas, who are excluded from Medicare coverage.

Despite having a similar rate of prevalance, Aborginal and Torres Strait Island women and women of colour are less likely to be diagnosed, meaning they have less access to timely treatment and are more likely to suffer severe chronic symptoms. There are several factors driving disparate sexual and reproductive health outcomes for migrant and refugee women and women of colour. Women’s accounts of pain are more likely to be dismissed by health professionals, due to the normalisation and trivialisation of women’s pain as “period pain”. Such dismissal has misogynistic roots in the centuries-old belief that the uterus was a nomadic entity wandering around women’s bodies causing ‘hysteria’ and ‘distress’. While such beliefs are rare today, gendered stereotypes still shape our experiences of healthcare. Doctors are more likely to take men seriously when they are in pain, and to prescribe men painkillers; while they are more likely to interpret women’s symptoms as psychosomatic, and to refer them to therapy. Health professionals are even less likely to believe and validate the pain of women of colour, due to the racist and colonial fallacy that people of colour have intrinsically higher pain thresholds.

Such normalisation of the pain of women and people assigned female at birth means that research on endometriosis has not been funded or prioritised to the same extent as other chronic conditions. In 2018 for instance, Australian government funding was the equivalent of $10 funding per person with endometriosis, and $200 per person with diabetes, a disease which has a similar impact on quality of life and affects about the same number of women. The Federal Government’s recent investment into 20 specialised endometriosis and pelvic pain clinics is a great start to addressing the inequity. Our next steps are to make sure these clinics are accessible and meet the needs of people from migrant and refugee communities.

When research has been conducted, data has mainly come from women with European heritage. This one-size-fits-all approach to clinical guidelines fails to account for different risk factors for disease, different diets, and the fact that women from go through major reproductive events at slightly different ages.

As we raise awareness for Endometriosis Awareness Month, let's also remember to amplify the voices of migrant and refugee women, women of colour, and Aboriginal and Torres Strait Islander women who often face additional barriers to accessing care for this condition. It's time for us to take action and demand equitable and accessible healthcare for all.

First published in edition #119 of The WRAP on 31st March 2023.