Endometriosis: gender, science, religion and politics

As health professionals, endometriosis represents more than just a women’s health issue, but a need to reconsider a lot of what has been handed down to us

ENDOMETRIOSIS is more than just a women’s health issue; it highlights aspects of gender inequality, the need for scientific rigour in our thinking, and prompts us to consider how we as doctors are all products of the religious, political and historical frameworks we function within.

I would like to offer some reasoning behind our medical blindness with respect to women’s health issues in general and in particular endometriosis.

In my work on various expert advisory groups, the lack of research in primary care has surprised me, as this is where endometriosis often presents and where so much has been missed.

The perpetual lack of funding for primary care research has had an impact on this, hence the need for government to support primary care research and national reviews and to follow through with the recommendations made.

Endometriosis is the condition in which the presence of endometrial tissue exists in places where it is physiologically inappropriate, that is, outside of the uterus. It affects one in nine women during their reproductive years, and in up to 30% of these women, it is associated with primary or secondary infertility. It can present with a variety of symptoms, not all of which are related to the menstrual cycle, which can make it difficult to diagnose, resulting in delays of 7–12 years on average.

For affected individuals, this translates into many years of school and university days missed, reduced work capacity, painful sex with its incumbent impact on intimacy, relationships, fertility, multisystem disease when other organs outside of the uterus are involved, and a toll on mental health, to name a few.

As women comprise more than 50% of the adult population in this country, this poses a substantial burden to health systems and has far reaching effects on national productivity levels, which is one of the key reasons for mobilising Government to establish the National Endometriosis Action Plan (2018).

The Plan has set goals and objectives to address the impact poor levels of community awareness and delayed diagnosis have on individuals who live with this chronic disease. Some of the key projects emanating from the National Endometriosis Plan include the review of the Endometriosis Guidelines, along with the creation of the Risk Assessment Tool for Endometriosis (RATE) and the Endometriosis Online Learning Module for health professionals, which are government-funded projects developed jointly by the Royal Australian and New Zealand College of Obstetricians and Gynaecologists (RANZCOG) and the Jean Hailes Foundation. These and other online resources can be accessed from the RANZCOG and Jean Hailes websites.

Recommendations that have been made following the National Review of the Australian endometriosis guideline (2021), are to be implemented over the next 5 years, and as a member of the National Endometriosis Expert Advisory Group overseeing this process, it comes as a relief to know that nationally, we are finally working towards giving women and non-binary people with this chronic disease the chance of earlier diagnosis and intervention.

One wonders how a condition that has been documented since ancient times and is so common can be ignored by the health system for so many generations. Focus group discussions during the National Action Plan described a health professional tendency to not enquire about menstrual patterns, or the normalisation of menstrual pain and heavy menstrual bleeding.

Statements such as “some degree of pain during your period is to be expected”, “you’ll grow out of it when your system matures”, or “get pregnant and it’ll cure you” have gendered overtones which lack empathy and delay further enquiry and investigation, but were commonly reported by all cultural groups.

I expound on a theory for the long-standing neglect of endometriosis and women’s health issues in this podcast and suggest that the societal tendency to ignore, under-report and mismanage women’s symptoms, can be traced back to two main sources: the foundations of science and religion. The foundational principles that underpin these frameworks have been perpetuated by governmental systems which digested these ideologies without review.

From ancient Greek times, Aristotle has been regarded as the first real biologist, and despite his generosity and kindness towards his wife and family, he made the fundamental error of focusing on women’s biological ability to harbour a pregnancy and lactate, deemed that women were less capable of rational thought and were therefore not valued as equals of men.

As one of the forefathers of our scientific foundations, these tenets have been built upon over the generations, and the structures of thought about science have remained largely unchanged. Women and children are still classified as property of their male partner to this day in many cultures, and doctors, as part of the general population, have been enculturated to think that female menstrual pain, much like labour pain, is natural and to be expected.

Until recently, only religion could and did challenge scientific principles, as we learned from Galileo’s confrontation with the Roman Catholic Church.

The recent Roe v Wade over-ruling by the United States Supreme Court is another recent case of religious interference with science and politics. Exploration of the roles women play in Judaeo-Christian-Abrahamic religions reveals a dichotomy between Eve, the temptress, and the Virgin Mary, resulting in the madonna–whore dichotomy, which has contributed substantially to the patriarchy of entitlement and easy perpetuation of these attitudes. Women and men have been deeply enculturated and many think this way, even if we don’t subscribe to any religion.

If you consider that throughout the ages, science and religion have been dominated by men who do not possess female body parts, who do not menstruate nor give birth, it is not unreasonable to suggest that the foundations of science and religion have been rooted in ignorance of women’s issues. The trajectory for women’s health concerns has been further directed down the wrong path by referencing these conditions and processes as “private women’s business” by men and women over the ages. As these concepts have not been overhauled and as cultural attitudes have been handed down, they continue to have significant and far-reaching implications for women of today.

If we relate this commentary back to endometriosis, questions around patterns of menstruation, for example, are important for the clinician to ask about. However, ignorance and shame around menstruation have pervaded both our scientific and religious foundations, which have been passed down through the generations without re-examination of these beliefs.

In most cultures, menarche is not celebrated, and can even be classified as a taboo topic. For some cultures, the onset of menstruation has become the line between girlhood and potential motherhood, which means girls are taken out of school, and constitutes justification behind childhood marriage.

The National Endometriosis Plan focus groups reported that even doctors avoid asking details around menstrual patterns, or when details were given by their patients, they were dismissed as part of the normal spectrum.

The body of medical principles we have acquired over the ages has been created by our scientific forefathers and influences our practices daily. Only recently have we started to question these paradigms and re-examine common diseases such as ischaemic heart disease, through the gender lens. As doctors, we are products of our own environments and have been influenced by beliefs that are handed down, which makes our shortcomings as healers clearer to understand. However, the enormity of the cost to women and society is beyond measure when you ponder the broader impacts if these beliefs and shortcomings are not addressed (here, here and here).

The National Endometriosis Action Plan has been a landmark achievement for many reasons and the implementation of the recommendations over the ensuing 5 years by the National Endometriosis Expert Advisory Group, represents an ongoing commitment to undoing the intergenerational harm created by these systemic flaws that go way back in time.

The argument for government commitment to ongoing community health awareness campaigns, education and training of the profession, community support, and funding for multidisciplinary endometriosis management is self-evident, and as health professionals, endometriosis represents more than just a women’s health issue, but a need to reconsider a lot of what has been handed down to us.

Honorary Clinical Associate Professor Magdalena Simonis is a GP, and a member of the Australian Department of Health National Endometriosis Expert Advisory Group. She is a member of the Endometriosis Online Learning Steering Committee, co-lead on the Royal Australian College of General Practitioners’ (RACGP) Red Book women’s health chapter and a member of the RACGPs Expert Committee on Quality Care.

The statements or opinions expressed in this article reflect the views of the authors and do not necessarily represent the official policy of the AMA, the MJA or InSight+ unless so stated.

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