The problem with endometriosis research

It’s sexist.

Not all of it but a lot of it.

I’m conducting research into women’s experiences of endometriosis and doctors’ perceptions of these experiences for my PhD, and because of this I read a lot of papers published in medical journals. And I am so sick of the sexism—sometimes obvious, sometimes concealed—within many of these papers.

Yes, you read that title correctly.

The authors state the objective of this paper as being “to evaluate physical attractiveness in women with and without endometriosis.” They justify the ‘need’ for the study with a vague reference to the importance of establishing a general phenotype (physically observable traits) of women with endometriosis.

In case you’re wondering how to measure a woman’s attractiveness, according to the authors you have two doctors take her into a room alone and assess her body in terms of her weight, height, hip width and breast size, and her sexual history.

The authors are also careful to note that participants should not be informed of the specific study questions in order to “limit potential unintentional seductive behaviors” which could sway the raters’ judgement. Because you know women; they're always seducing somebody to get their way.

This paper was published in 2012. In the prestigious journal, Fertility and Sterility, no less. And the research somehow got ethics approval prior to this.

Understandably, this paper generated considerable controversy among researchers, clinicians and consumers. Organisations such as the Executive Committee of the Mental Health Professional Group of the American Society for Reproductive Medicine denounced the research prompting the authors to release a statement defending (and not apologising for) the research. 

Example 2 (concealed sexism): Health professionals experiences of providing care to women with potential or diagnosed endometriosis*

This paper is one of few to have directly consulted the perspectives of medical professionals, an important perspective to consider. The following quotation from the paper is in relation to the researchers (all medical doctors) asking GPs, gynaecologists and midwives about their experience of providing care to women with symptoms suggestive of endometriosis:

The HCPs [health care professionals] reflected that there could be various explanations to intensification of pain, such as former trauma, abuse or psychological disorders.”

This is consistent with several studies that have found women to report their doctors as suggesting their symptoms are due to trauma and/or supposed psychological disorders both before and after diagnosis of endometriosis.

For some people (i.e. both women and men), traumatic experiences, abuse and mental illness have a complex role in their experience of later illness. However, this complexity is rarely acknowledged or explored in the medical literature, as it was not done in this paper.

Further, throughout this paper women with potential or diagnosed endometriosis are described as “a challenging group”, a group who are “hard to satisfy”, and women who “for the most part” just need to be “calm[ed] down”. That doctors would describe women in this way is offensive but not surprising when considering the social context within which this research took place.

Historically, the institute of Medicine established itself as having all the answers about the human body and because of this doctors face considerable social pressure to always provide answers to patients. When answers are not available it can be difficult for doctors to acknowledge this in the face of such pressure. Add to this Medicine’s long history of hystericising women and their bodies and we’ve got women being denied quality health care in favour of psychogenic explanations

The authors of the paper in question do not acknowledge or explore the implications of this social context and in doing so provide a simplistic account of doctors’ experiences of providing care to women. As such, this research is unlikely to lead to improved care that meets women’s diverse needs, and it perpetuates harmful beliefs about women and their bodies.

And this right here is the problem.

Such research considers only one dimension of the complexity that is endometriosis. How can this progress our understanding of endometriosis and inform high quality care for the women who live with it? 

It can’t. At least not at the rate women need it to.

After decades of research and millions of dollars, women with endometriosis have (arguably) experienced little significant improvement in their experience of the disease and the health care they receive for it.

Let’s do better. Let’s be better. Women are entitled to research and health care that does not objectify them or perpetuate harmful beliefs about them and their bodies.


Kate xx

*This is not the title of the actual paper nor have I provided a link to it. I chose to exemplify this paper because it was the most recent example of concealed sexism to cross my desk; there are countless others like it. 

Image: Death to the Stock Photo