Endometriosis: is the patriarchy winning?

It’s December 24th. Laura just canceled her attendance at the Christmas party. It’s day 28 of her cycle and she still has to go shopping for dinner.

Laura doesn’t live in a hot district, but has her very own crisis zone inside of her: her uterus. Or rather her whole body. Laura was diagnosed with endometriosis and every menstruation is like a wildfire that sweeps through her body. However, wildfires usually pass quickly, but endometriosis is a different story.

Laura has had many moments like this. And she is not the only one. Endometriosis is a disease that affects around one in ten menstruating people and yet is often considered invisible in medicine. In Luxembourg, there are currently no statistics on it, neither on the number of diagnoses nor on those affected. As a result, many cases remain undetected and the actual extent of the disease remains in the dark. The World Health Organization estimates that around 190 million people are affected worldwide. Although endometriosis is one of the most common gynecological diseases, it is often neglected in medical research and health policy.

“That’s not as high as the number of cancer patients,” says Pit to Laura on her first day at work. But the reason why this number is so low, even though so many are apparently affected, is precisely the problem. The low official figure is not due to the fact that endometriosis is rare, but because it often goes unrecognized. 

Endometriosis is a chronic condition in which the tissue that resembles the lining of the uterus grows outside the uterus. Endometriosis has been around forever, it is the diagnosis that causes problems. Symptoms often manifest themselves very differently, writes sante.lu in a published research article, “sometimes pain dominates, in other cases it leads to involuntary childlessness, impairment of other organ systems (e.g. kidneys, intestines) or it slowly and progressively damages internal organs without even being noticed.”

The reasons for these delayed diagnoses include a lack of research, a lack of awareness in the healthcare system, misdiagnosis and the normalization of pain in menstruating people. It often takes many years before endometriosis is identified. But why is a disease that almost exclusively affects FLINTA so little researched and diagnosed?

It is not only a lack of knowledge, but also deliberate ignorance. Reproductive health, including menstruation, pregnancy, childbirth and menopause, has long been dismissed as a “women’s issue” and not considered a serious medical field. As a result, research in this area has been underfunded and lacking in resources. Even today, menstrual pain is often dismissed as “normal”, even though it can indicate serious conditions such as endometriosis. Many affected people report that their symptoms are dismissed as “psychosomatic”, which is due to deeply rooted gender stereotypes.

FLINTA people have no place in the patriarchy. Whether in drug tests or studies, the norm, as usual in patriarchy, is the white cis man. He is considered the “standard”, while all other genders and identities are considered deviations or exceptions. This means that drugs, diagnoses and treatment methods are primarily tested and developed on him, systematically excluding FLINTA people. Systematic exclusion from society means that the needs, experiences and perspectives of people are ignored or marginalized in important areas such as medicine, business and politics. This systematic exclusion is reflected in a lack of data, which is why the term gender data gap is used.

In her book “Invisible Women: Exposing Data Bias in a World Designed for Men”, author Caroline Criado Perez gives countless examples of discrimination and its effects. Some things are annoying, others are life-threatening, such as heart attacks or car accidents. For example, most crash test dummies are modeled after the male anatomy, and cars are built accordingly. Women are 47% more likely to be seriously injured in an accident than men, and 71% more likely to be moderately injured. A woman is 17% more likely to die in a car accident than a man.

As a result, many medical findings and treatment methods are primarily tailored to the cis-male body. For example, dosages of drugs that have been tested on cis men may be unsuitable or even dangerous for FLINTA people. In the case of endometriosis, a disease that only affects people with uteruses, this has very specific consequences. Here is a list of failed steps in the diagnosis process:

• • people affected by the illness are not believed when they go to doctors;
  • because there is too little research, a wrong diagnosis is made at first;
  • patients are treated incorrectly for years;
  • They have to go from doctor to doctor and from country to country to find out what the diagnosis is

The intermediate stages such as despair, hopelessness and anger are omitted here. Unfortunately, endometriosis patients are often unable to skip these stages. Despite advances in diagnostics, it still takes an average of 7-10 years before endometriosis is even diagnosed, according to the Endometriosis Association Germany. It is not simply a fault in the system, but the result of a system that does not include FLINTA. It is therefore not surprising that those affected are systematically not believed and misdiagnoses arise. 

Long waiting times for specialist appointments, a lack of specialized centers and a lack of interdisciplinary cooperation between gynaecologists, pain therapists and psychologists are further major problems.

Patriarchal structures do not operate in isolation, but intersect with other forms of discrimination such as racism, classism and transphobia. Especially for POC (people of color), FLINTA people, people from low-income backgrounds and trans people, this means even longer diagnosis times, poorer medical care and a higher risk of not being taken seriously.

“It’s getting better and better with feminism and all that,” says Pit, after Laura has given him the list of failed steps. Yes, feminist achievements are important, but they are not enough if political processes are working against them at the same time. Because of petitions against sex education in schools, activists and politicians need to become more vocal to secure feminist causes in politics too.

Here, as a balance, is a more positive list that Laura believes would help her and others:

• • Endometriosis should be recognized as a chronic disease in the work context and thus allow more flexibility in everyday working life.
  • (More) specialists in her country to improve diagnostics and reduce waiting times;
  • Cost coverage for various treatments and therapies.
  • Counselling centres and self-help groups for those affected.
  • Education and de-tabooing in schools, the media and the public.

Although endometriosis is officially recognized as a disease in Luxembourg, this recognition is not yet sufficiently reflected in practice. It is crucial that politicians prioritize the disease in order to improve research, care and social awareness.

“It sounds like the government needs to make a national action plan against endometriosis.” Pit is absolutely right. Laura could access and be reimbursed for helpful therapies. Psychological support alongside treatment therapy would also improve her mental health. With these policy steps, people who are just starting to have symptoms and think their pain is normal would be helped even more. It would help young people to feel considered if such issues were taught about in school, talked about without shame and experiences shared. Recognizing it as a serious disease alongside cancer or diabetes is not just a sentence on a piece of paper, it is a recognition of the reality for one in 10 people with uterus. Australia and France have already developed national strategies to better treat endometriosis. It has become clear that better care is not just a health concern, but a political issue that requires political solutions.

Awareness of endometriosis has increased in recent years. Initiatives such as “Endometriosis Awareness Month” in March helps raise awareness of the disease.

Feminist movements have already achieved a lot for FLINTA, e.g. the destigmatization of contraceptives, the legalization of abortion in many countries and the recognition of gender-based violence as a health problem. These achievements show that collective struggles are effective. Laura may not be in a position to deal with society’s crises right now, but as feminists, as Pit is now, we are fighting together, step by step, against patriarchy; without fists.