Endometriosis and Feminism

Overview

Endometriosis is a medical condition that affects individuals with the internal reproductive systems of a uterus and ovaries. It is a condition where tissue similar to the endometrium, the tissue lining the uterus or womb, grows outside the uterus instead of inside it. Symptoms may include chronic pelvic pain and infertility, and it has been shown to have major adverse effects on both the physical and mental health of those with the condition. Endometriosis is often diagnosed very late, if diagnosed at all, despite individuals living with pain and other symptoms for many years, and it has no conclusively identified cause or cure. It has become portrayed as a symbol for the lack of research surrounding the physical health of people with internal reproductive systems, and patients are actively fighting for greater acknowledgment and research into this condition.

Individuals with ovaries and a uterus in healthcare

Gender gap

Although endometriosis can be experienced by individuals of any gender with an internal reproductive system and vagina, this type of anatomy and thus endometriosis has come to be associated with the female gender identity, due to the discrimination and erasure of non-cisgender identities in Western medicine. Due to gender discrimination in society, scholars have found that disease and illness in women is under-researched, under-diagnosed, and under-treated. This gender discrimination and gap in healthcare research has thus resulted in negative consequences and inequality in healthcare for all individuals who have the internal reproductive functions of ovaries and a uterus, regardless of whether they identify as female or not.

Lack of research

A main flaw in the women’s health research is that most medical research has been conducted on bodies that have a penis, i.e. what the Western medical tradition has defined as ‘men’. In a patriarchal society, the male population is deemed default, and physical health aspects of men are assumed to either apply to women just the same, or they are labelled as deviant. Women’s voices on health have also been suppressed, as many women report facing skepticism and dismissal of their concerns when visiting a physician, devaluing the female experience. When the male physical health findings are deemed the standard, it ignores that some of the same diseases can show different symptoms in women and in men, where solely a knowledge of male symptoms puts women’s lives at risk. For example, heart attacks appear as chest pain and pressure in men, whereas extreme fatigue may be the primary symptom in women, leading many cardiac arrests in females to be ignored when not identified correctly. Due to the lack of research into female health, doctors have expressed that it becomes somewhat of a guessing game when prescribing medication to women, as side effects or correct doses are usually not reported for females.

All in their head

When women manifest physical symptoms that physicians do not recognize it is not uncommonly attributed to psychological factors, or as being ‘all in their head’, implying the physical effects they are experiencing are non-existent or exaggerated. This puts women’s health at a greater risk, and are usually forced to visit multiple doctors before receiving a diagnosis, having serious conditions like heart failure of tumours misidentified and brushed off as something else. This societal bias against women lead to adverse health effects for all individuals with ovaries and a uterus, whether they be female or not, due to the lack of research and validation of the experiences and anatomy of this type of body.

The role of endometriosis

Diagnosis

Endometriosis is reported to affect about 6-10 percent of the general female population, yet it is still largely undiagnosed in people, and those who finally receive a diagnosis will do so after an average of eight doctors and ten years. The pain is often trivialized as being part of the normal menstrual cycle and menstrual cramps , and it is not uncommon for those suffering to see a multitude of physicians before receiving a diagnosis . The prolonged period it takes to be diagnosed also contributes to the duration and severity of pain experienced by individuals with the condition. Those suffering from this severe pain are often told they are exaggerating, and that it is all in their head, that their pain is probably not as severe as they say it is, which leads many individuals to not even know that they actually have an illness, believing that this may be normal.

Research

Shannon Cohn calls endometriosis “the most common devastating disease on the planet, that most people have never heard of”. Endometriosis is not widely known about among the regular population, and even within the medical community the condition is dismissed as “female problems” or the information on it is outdated. The existing research on endometriosis is inconclusive of what the causes are or what the cure is, so even if a patient finally receives a diagnosis, it is not necessarily true that the condition can be treated or alleviated. Endometriosis has thus in a way become symbolic of the research deficiencies and inequality surrounding women and other menstruating individuals, and their relationship with the healthcare system. Endometriosis is a feminist issue, as much of the nature of research, diagnosis and treatment, or lack thereof, is characterized by gender inequality and highlights a misogynistic healthcare system and society, where the female experience is dismissed .

Feminism and action

Feminist discourse surrounding the disease thus stresses the importance of further research into endometriosis, while simultaneously showcasing the disease as an example of systemic inequality for all individuals, regardless of gender, who have ovaries and/or menstruate. Feminists bring attention to the power inequalities between doctor and patient, and how this reinforces societal gender discrimination.

Action taken

When the doctors fail, many of those suffering from endometriosis utilize platforms such as social media accounts and blogs to share their story, to spread awareness to those suffering without diagnosis, as well as to the rest of society. People with endometriosis gather in support groups, online forums, and self-help organizations, to support each other, but also to develop the field of knowledge surrounding the disease by learning from their shared experiences. These individuals thus form an ‘epistemological community’, a group who shares a body of knowledge and practices for developing knowledge, establishing themselves as experts on their own disease, and can offer suggestions and developments on treatments to each other based on experience . Activists have continued to highlight healthcare disparities as active gender discrimination, putting large portions of the population at risk, and have put pressure on politicians as well as the healthcare industry to address this issue. In 2016, the American National Institution of Health began requiring all applications for research funding to include the possible variable of sex in animal and human studies. This was a big step in the direction of increased healthcare equality, but there is yet more work is required to achieve it.