Endometriosis is a common condition in which tissue similar to the lining of the uterus grows outside of the uterus. That tissue doesn’t shed, as in the case of periods, but because it still responds to the hormones that trigger bleeding and shedding, it often bleeds and swells and can lead to lesions, cysts, nodules and scar tissue that cause severe cramping, bleeding and pain. People with endometriosis can experience a range of symptoms including abdominal bloating, nausea, fatigue and sometimes infertility. The condition is most closely associated with severe, life-impacting pain.
Endometriosis affects an estimated 1 in 10 women and non-binary people – as many as 200 million people worldwide.
However, until recently, there was very little critical, social science or feminist literature on the condition. Indeed, much like a number of other chronic pain conditions that are overwhelmingly experienced by women and people assigned female at birth, the medical literature on the condition has also, until recently, been unacceptably scarce. Also, in many parts of the world, including Australia, there is a 6-12 year delay to diagnosis.
One reason for these various areas of neglect is the widespread social belief that menstrual pain is considered normal, natural and something to endure. Historically and today, women have struggled to have their accounts of pain taken seriously. As GLaD research lead Associate Professor Kate Seear argues in her groundbreaking sociological study of the condition, The Makings of a Modern Epidemic: Endometriosis, Gender and Politics, endometriosis is just one example of this tendency. Across the historical archive of modern medical and gynaecological conditions, women’s pain has often been dismissed or trivialised. In examples from the late nineteenth century, menstrual pain was associated with either ‘delicate girls of feeble condition’, women who lead an inactive life, or overworked servants; another text ascribes menstrual pain to women ‘of a nervous temperament’, women who were unmarried and / or had not borne children.
Endometriosis developed in the shadow of these discourses about women’s pain. When research on the condition did begin to emerge during the twentieth century, the condition was routinely said to be something specific to sensitive or weak women and those who had pursued an ‘unnatural’ life path, including education and work. As Kate’s book chronicles, endometriosis came to be seen as a ‘career women’s disease’ and its associated complaints of menstrual and pelvic pain have – and continue to be – trivialised, even into the twenty-first century.
However, as Kate argued in a Monash Health Humanities talk delivered recently, when we begin to question deeply entrenched views about women’s credibility as complainants, there is more to this picture that we might consider. Kate was moved by the story of a New Zealand woman named Azarlea who was denied pain medication when she presented at an emergency department in Wellington unable to cope with crippling pain from endometriosis. In Azarlea’s case, rather than take her pain seriously, her treating doctor called her a ‘drug seeker’ and said he’d made a note in the hospital’s digital records that she should not be allowed any future prescriptions for opioid painkillers. Alongside her own recent – and lifelong – experiences with endometriotic pain, Kate began reflecting afresh on the treatment of women with the condition, and related conditions, and the treatment of people who use, have used, or are suspected of using, illicit drugs.
As social research suggests, people who use drugs are among the most heavily stigmatised populations in the world. Among the discrimination they may face, a common issue is the denial of pain medication, including in emergency settings. In this respect, as Kate’s recent talk pointed out, people with endometriosis and people who use drugs have something in common: they are both at risk of harmful, stigmatising assumptions about their healthcare needs, and their credibility as claims-makers is often in question. In this sense, both people with endometriosis and people who use drugs are subject to a judgemental framework in which, as Kate observed,
there are genuine pain patients, on the one hand, who are deserving of care, and non-genuine ‘drug seekers’ or addicts.
Combining her earlier research on endometriosis with more recent work on the experiences of people who use drugs, including stigma and discrimination, Kate’s talk explored this binary logic of ‘deserving’ and ‘undeserving’ pain patients, its historical genealogies, its social logic of comparison, and suggested ways forward in which we may work to overcome it.
You can watch and listen to Kate’s Monash paper in full here.