Sofia Wanström reflects on the epistemic injustice experienced by people with endometriosis related pain
I thought of all the years I’ve heard that it was nothing to worry about. That menstrual pain was not dangerous. But it was. It had been dangerous the whole time. (Johanna Frid, Nora eller brinn Oslo brinn)
Endometriosis is a chronic disease characterised by endometrial tissue outside the uterus (Giudice 2010). Symptoms include pelvic, back and stomach pain, pain during sex, and heavy bleeding. The disease affects approximately 6–10% of people born with a uterus (ibid), but as the disease is largely invisible, receiving a diagnosis can be difficult.
In most cases, laparoscopic surgery—a procedure that uses small incisions and a camera to perform operations inside the abdomen or pelvis—is required to confirm the diagnosis. However, in order to be referred for an exam, the person suffering must first recognise their pain as symptomatic of a disease, and subsequently have these symptoms and pain acknowledged by a medical professional—as menstrual and gynaecological pain, it is often dismissed as a natural part of being a woman (Cleghorn, 2021).
Medical bias against women/people with a uterus and the conditions affecting them has deep historical roots that continue to influence healthcare today. For much of history, ailments affecting women were assumed to be caused by the womb, which was also seen as the source of emotional instability. The notion of women’s “excessive emotions” has, throughout history, been used to dismiss their pain as psychological or hormonal, implying their emotions strongly influence their bodies (Cleghorn, 2021). Even today, women’s abdominal pain is sometimes attributed to psychosomatic causes or emotional distress by healthcare providers.
The notion of women’s pain as either natural or imaginary not only shape individual interactions with healthcare providers but also influence broader medical knowledge, where research on conditions like endometriosis has been historically underfunded and overlooked.
The idea of menstrual pain as normal can prevent people recognising symptoms of endometriosis as signifying a disease. In an interview I conducted for Pain Unseen—a digital exhibition about endometriosisat Stockholm Museum of Women’s History—a respondent told me:
Well, I’d had pain ever since I got my period, basically. So, it wasn't like anything new. But for me, it was just normal. I hadn’t even questioned whether it wasn’t normal. Because well, my mom had learned that it’s just kind of part of it to have pain. I just remember one principal at school once told me, "Hey, it’s not normal to be in that much pain". Because I was sitting there crying because it hurt so much. And I said, "Yeah, well, it’s just my period". You know. I hadn’t thought that it could be something else.
Noticeable is how even severe pains can be interpreted as normal, due to the normalisation of menstrual pains and a lack of knowledge about other possible causes. This woman received her diagnosis only after having emergency surgery for endometriosis. Studies suggest that women suffering from endometriosis might perceive themselves as “unlucky” rather than ill; women who are aware of their mothers suffering similar symptoms often especially delay seeking medical help (Ballard et al. 2006).
Of course, to a certain extent it can be normal to feel pain during your period. But there is a difference between “normal” and “abnormal” pain and it is crucial that this distinction becomes more widely understood. Children should be informed about abnormal pain, as endometriosis is not a “woman’s disease” but can start in childhood and affect anyone with a uterus.
Besides thinking its normal, people suffering from endometriosis are often told as much from the people around them, including medical professionals. Another woman recounts:
I heard a lot from people around me that I was being hysterical, that this is just how it is to be a woman, that I should just toughen up, that this was normal and natural and a part of life. And the first time I went to the ER for my abdominal pain, I was 20 years old and crawling to the emergency room, and they said: “You have a urinary tract infection, stop making such a fuss!”
This quote underlines how pain is something you are expected to be able to cope with and addressing it can be perceived as weak. This perception can make people reluctant to disclose suffering from pain (Ballard et al., 2006).
“Hysteria” has also historically been a popular diagnosis for women suffering from symptoms of endometriosis (Nezhat et al. 2012). The above quote highlights a view prevalent today, that women are prone to exaggerate or imagine their pain, making them less credible reporters of their own pain (Wiggleton-Little, 2024). As an example of epistemic injustice (Fricker, 2007), the dismissal of women’s pains as “emotional” or “hysteric” contributes to delayed diagnoses and inadequate treatment (Mickiewicz, 2025).
Inadequate treatment is not only the result of gender bias in healthcare, but also a general lack of knowledge about endometriosis among medical professionals. The respondent who received emergency surgery for her endometriosis recalls her doctor asking, after the procedure, what endometriosis was and what she should do going forward. They told her that she should seek help from a health care provider only if it became a recurring problem. She had to Google the disease, whilst her neighbour, who also suffers from endometriosis, told her to seek care immediately.
Others seeking care from for symptoms of endometriosis tell of a long process with multiple doctors before finding one who recognises the symptoms and/or takes them seriously. In Finland, it currently takes an average of seven years to receive an endometriosis diagnosis (Engström, 2018).
A respondent from Finland received a diagnosis after 11 years only after visiting a private health care provider, who was specialised in the area. Receiving care is thus also a financial concern, as private health care is significantly more expensive. Even after receiving a diagnosis, an interviewee notes that the treatment of endometriosis is not subsidised in Finland, unlike other chronic illnesses.
Considering the difficulty of having one’s pain recognised, it is unsurprising that the respondents for Pain Unseen hoped for an increase in the knowledge and understanding of endometriosis. This includes acknowledging the pain, and also the extent to which it can affect the person’s life.
Maybe just the understanding that… it’s not just a little bit of pain, but that it can really, really, really hurt and it can seriously affect your ability to act, in the worst cases, very drastically. And just that it’s not normal. It’s not just a little pain during your period. It’s quite a lot of other things too.
Again, the respondent challenges the notion of the pain as inconsequential or normal, emphasising its pervasiveness and wide-ranging impact on their life. Other respondents similarly mention how the pain of endometriosis could render them incapable of going anywhere or doing anything, leading some drop out of school or withdraw from social gatherings—eventually resulting in social exclusion. Physical activity and stress can make the pain worse, meaning that people’s lives can more or less be defined by the management of their symptoms. Long-term pain can also a toll on psychological wellbeing, with consequences such as anxiety and depression (Rasp et al. 2024; Culley et al. 2013). Symptoms of endometriosis generally occur at a time in life when multiple life-trajectory decisions are made, such as making a career choice, forming stable relationships, or starting a family. The impact that the disease may have on a person’s life course should not be ignored.
It is often claimed that women are allowed to show emotions, whereas men are not. However, as shown here, this perceived allowance does not mean that such expressions are respected. On the contrary, the association between women and emotions is often used to dismiss their complaints altogether. When perceived as overly emotional and prone to exaggeration, women are frequently deemed uncredible reporters of their own pain.
We must improve society’s understanding of endometriosis and what constitutes “normal menstruation”, as well as challenge harmful cultural narratives describing pain as normal for women, something they over-exaggerate or something they should be able to deal with as part of their gendered experience.
This text has been written as part of the EU-project #ENDOs, which educates and supports adults facing chronic illnesses, with a particular focus on endometriosis.
To learn more about the platform, you can watch a short video here. The project is 100% GDPR compliant and the platform retains no personal information.
The project is co-funded by the Erasmus+ Education and Training Programme. Views and opinions expressed are however those of the author(s) only and do not necessarily reflect those of the European Union or the European Education and Culture Executive Agency (EACEA). Neither the European Union nor EACEA can be held responsible for them.
About the author
Sofia Wanström is a postdoctoral researcher at Åbo Akademi University in Finland. Her research centers on women’s personal narratives, currently focusing on experiences of singleness, following a PhD on stories of sexual violence.
References
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