Dr Kate Young is a Research Fellow at the Queensland University of Technology in Brisbane, Australia. She specialises in medical uncertainty within women’s and children’s healthcare. Kate is sometimes also a freelance writer and always a (bad) feminist.
Back in 2015 I had Kate reach out to me asking if I wanted some help in the Tsuno office- she was wanting to do something helpful for the cause and get away from her computer screen and PhD for a while. I had her doing something with boxes I believe, in less than ideal conditions, but she seemed positive about the experience nonetheless! During a chilly morning in a (very cold) warehouse I was renting at the time, she told me all about her research she'd just embarked on, and subsequently, because it was the first time I'd heard of Endometriosis, she told me about the disease that can impact 1 in 10 women around the world.
Recently, I called Kate to ask her opinion about what we should focus on for EndoMarch, and as I was chatting to her I realised we should feature her! So I asked her four questions to give a snippet of an insight into her wealth of knowledge on the topic of Endometriosis.
1. Can you give us a brief overview of your PhD research?
I worked with women who have endometriosis, and doctors (GPs and gynaecologists) who provide care to women with endometriosis, to understand their views and experiences of healthcare for the condition. In a nutshell, I found that women with endometriosis present a challenge to the current medical system—one that was founded by privileged men and has been based on men’s bodies. Women’s disease and symptoms, even after diagnosis, are often not understood by doctors. To address this challenge, medical education and societal beliefs about women and their bodies encourage doctors to attribute ‘fault’ within women and their bodies. It might be suggested, for example, that a woman’s symptoms are a product of her mind, echoing centuries of women being labelled ‘hysterical’.
To overcome such prejudice, the women I spoke to suggested that doctors work with women as partners in their care: listen to and believe women, understand and acknowledge medicine’s historical tendency to deny women their full humanity, and be honest with women about what they (the doctor) do not know or cannot do.
2. How did you get interested in and involved in this research?
I began my research career in maternity care with a group of sparky researchers, midwives and doctors. Our work revealed to me the many ways in which our society, healthcare system, and medical professionals deny women their full humanity. I knew I wanted to do a PhD as my next career step and figured endometriosis—a condition experienced by many that had little medical knowledge behind it—would be an interesting area to understand better how women are viewed within medicine. This was in 2013 when endometriosis was not generally very well known.
With the support and guidance of my two supervisors, I hatched a research plan and was fortunate to be funded by the National Health and Medical Research Council and Australian Rotary Health to complete it.
3. Can you share some of your top resources for Endometriosis with us?
- Pain & Prejudice by Gabrielle Jackson: This is a fantastic book that explains endometriosis and how we got into the current situation of low value care for many women. (I also talk about my research throughout it.)
- Endometriosis.org: This is the global site for endometriosis information and may be a useful starting place to understand what the condition is.
- SAFE: This is a team of gynaecologists who specialise in ultrasound for endometriosis. This website includes a clear description of what types of disease may be detected on ultrasound and lists trained providers across Australia.
- Consumer representative and support groups: There are several groups across Australia doing fantastic work to improve the experiences of women with endometriosis. Most have a comprehensive website, social media, and online closed groups. Special mention to QENDO who have a helpline and various programs that provide immediate support to women.
- Tonic & Tea: This is my blog where I write about all things women and health. You can also find all my academic papers and freelance writing here, should you wish to read more about my research.
4. What three things would you like to see change within endometriosis research/care/awareness?
- Better representation of diverse women’s experiences of endometriosis: In public awareness campaigns, on social media and within research, privileged white women are over-represented. Endometriosis does not discriminate by ‘race.’ Neither should research or socio-cultural representations.
- Better information about potential infertility: Endometriosis has long been spoken of by researchers and medical professionals as a sentence for infertility. This is not evidence-based. The best available data we have suggests that 10-15% of women with endometriosis experience infertility (and some of these women will likely have a baby with assistance and/or time); this is compared to 9% in the general population. Women need accurate information about endometriosis-associated infertility to inform their reproductive choices and care.
- Quality healthcare for all women that upholds their human rights: Telling women that pregnancy is a treatment for endometriosis (it’s not) is appalling. Dismissing women’s concerns and labelling them inherently difficult is unacceptable. While not all women receive such ‘care’, too many do. Such treatment denies women their full humanity—their right to access healthcare that fosters their full social and economic contributions to our society. We need to do better.