Loïc Bourdeau discusses the #ENDOs project and the deployment of narrative tools to challenge the normalisation of endometriosis pain, empower those living with the disease, and educate health practitioners.
Photo credit: Gokul P. Dev. Reproduced with permission.
When Sofia Wanström first wrote about endometriosis for The Polyphony, the central question was stark: what happens when severe menstrual pain is dismissed as “normal”? That article, “It’s not normal to be in pain,” showed how endometriosis sits at the intersection of gender bias, epistemic injustice, and chronic illness, and how people in pain are routinely disbelieved by those charged with caring for them (Wanström 2025). These patterns are not isolated clinical errors but part of a wider cultural tendency to trivialise menstrual pain and to treat those who insist otherwise as unreliable witnesses.
This new piece picks up those threads from inside the #ENDOs project, a European Erasmus+ initiative focused on supporting adults living with chronic illness, and specifically endometriosis. As artistic contributions to this project were discussed in the previous piece, I focus now on our narrative pathway, grounded in narrative medicine. Narrative medicine, in Rita Charon’s now-classic definition, trains clinicians and others “to acknowledge, absorb, interpret, and act on the stories and plights of others” so that care can be more attentive, respectful, and just (Charon 2001, 1897). Here, our aim is to treat stories as a form of knowledge and to build practical resources, such as an emotional dictionary. I then discuss our report-translation app, developed by our digital health partners: Endostand. Overall, #ENDOs seeks to make it harder to ignore endometriosis and easier to act on what people with endometriosis already know.
From statistics to stories
Clinically, endometriosis is now widely recognised as a chronic, inflammatory disease: tissue similar to the uterine lining grows outside the uterus, causing pain, fatigue, fertility problems and a host of other symptoms (Giudice 2010). Yet across countries, it still takes an average of 7–10 years to receive a diagnosis, with multiple studies documenting the social and psychological fallout of those delays (see Culley et al. 2013; Missmer et al. 2021, 2022). People re-organise their education, work, relationships and fertility decisions around unpredictable flare-ups, while being told that their pain is “normal,” “in their head,” or a test of “womanly” endurance.
Feminist and disability scholarship has called this a form of structural and epistemic injustice, where people with endometriosis are treated as unreliable witnesses of their own bodies (Jones 2016; Lindeman 2023). The #ENDOs consortium – artists, clinicians, digital health specialists, narrative-medicine practitioners and patient advocates from Finland, France, Ireland, Italy and Sweden – was set up to address these injustices not just by producing more data, but by changing how that data is generated and used. Our work package “Tell the Story” is the narrative arm of this project. It has three main strands: a literature review and the identification of the genre of “endo-literature,” a multilingual narrative-collection pathway using the Digital Narrative Medicine Lab (DNM) platform created by our Italian partners, and the creation of an emotional dictionary.
Our first task was thus to design narrative prompts for the platform. We began with a scientific review that cut across clinical and humanities research. On the medical side, we looked at work on quality of life, life-course disruption and delayed diagnosis (e.g., Gao et al. 2006). On the humanities side, we drew on feminist disability studies and qualitative research highlighting diagnostic delay, disbelief, and the cumulative impact of being told that “nothing is wrong” (see Jones 2016; Fernley 2021). Instead of finalising questions in a closed meeting, we tested them at the Endometriosis (R)Evolution conference in Graz, Austria, in May 2024. Researchers, clinicians, artists and advocates, many of them living with endometriosis, spent a workshop ranking, rewriting and adding prompts. We started with a list of over twenty prompts and, through this process, selected eight themes that participants deemed most relevant: diagnosis, bodily sensations, relationships, medical encounters, pain management, food, visibility/invisibility, and hope and the future.
While designing this narrative pathway, the team also talked about who would not be in the room. An online platform is convenient for those with stable internet, time, and enough emotional bandwidth to revisit trauma. Participants told us that many Endos – people living with endometriosis – are exhausted by years of medical appointments and advocacy. After a decade of being ignored, why would you share your story yet again with people you do not know, in a project that may or may not change anything? That question became part of the design brief. We kept the prompts short, allowed people to answer as much or as little as they wished, and foregrounded anonymity, consent and the right to walk away.
What Endos told us
Once the pathway was launched in Ireland, France and Italy, contributors were invited to join via social media, patient groups and associations. We have analysed a varying number of submissions depending on each country. Across languages, Endos describe endometriosis as both invisible and profoundly disabling. One French contributor calls it “très répandue, banalisée, genrée, frustrante, compliquée à gérer, variée” [very widespread, trivialised, gendered, frustrating, complicated to manage, varied], and insists that “ce n’est pas parce qu’on ne la voit pas qu’elle n’existe pas” [just because you can’t see it doesn’t mean it doesn’t exist]. Another writes: “Je vis avec des couteaux qui dansent dans mon ventre, mes jambes, mon dos et ma tête” [I live with knives dancing in my stomach, my legs, my back and my head]. Italian contributors similarly evoke long histories of severe, dismissed pain: “Fin dall’età di 17 anni soffrivo di forti dolori mestruali, ma solo a 43 anni … ho sentito per la prima volta la parola endometriosi” [From the age of 17 I suffered from severe menstrual pains, but only at 43 … did I hear the word endometriosis for the first time]. An Irish participant summarises notes: “it hurts to sit, stand, or walk. It hurts to exist.”
Photo credit: Gokul P. Dev. Reproduced with permission.
Testimonies also detail the work of living with endometriosis. Food, rest and warmth become forms of self-care: “Ce qui m’aide à calmer mes douleurs, c’est principalement d’éviter les aliments inflammatoires” [What helps me calm my pain is mainly avoiding inflammatory foods]; “La terapia ormonale … quando abbino alla cura un’alimentazione equilibrata, mi sento ancora meglio, sia fisicamente che psicologicamente” [Hormonal therapy … when I combine it with a balanced diet, I feel even better, physically and psychologically]. Support is framed as relational and educational: social media help to “parler de la maladie sans que ce soit tabou … de manière pédagogue” [talk about the disease without it being taboo … in a pedagogical way], while trusted clinicians and relatives “rassurent et m’aident à tenir” [reassure me and help me hold on]. Across French, Italian and English, the contours are strikingly similar: endometriosis is an invisible, whole-body, life-reordering condition. In terms of formal considerations, similarities prevail, but it is worth noting that French accounts emphasise banalisation and the mental load, Italian testimonies dwell on years of extreme pain and delayed diagnosis, while Irish narratives tend toward stark statements of total exhaustion.
Reading endometriosis in French
In parallel, I mapped what can be categorised as a specific genre of endometriosis literature: memoirs and first-person narratives in French written largely by media personalities, journalists, or otherwise well-positioned women with the cultural and financial resources to publish, sometimes through mainstream houses, sometimes via small presses or self-publication. These include Gaëlle Cornec’s Précieuse. Histoire d’un enfant rêvé (2017), Rose Sorel’s Je suis cette fille sur dix (2019), Anne Steiger’s Une araignée dans le ventre. Mon combat contre l’endométriose (2018), Laëtitia Milot’s Le bébé, c’est pour quand? (2017) and Enora Malagré’s Un cri du ventre (2019).
Despite their differences, these texts share recognisable patterns. They often open not with first symptoms but with a crisis: collapsing on a film set, waking up from emergency surgery, or reaching an unprecedented level of debilitating pain. Everyday pain is retrospective: something endured in silence and only later understood as pathology. Narratively, interruption becomes the organising principle: work, sex, friendship and fertility plans are repeatedly derailed by symptoms that others have dismissed for years. The metaphors are striking: spiders colonising the abdomen, lava burning through the gut, a uterus that is “disgusting,” and therefore so is the self. At the same time, many of these accounts are framed through fertility: the fear of infertility, the grind of IVF, the social violence of being a woman “out of the frame” because she has no child.
These accounts have raised awareness, but they also centre a very specific classed and heteronormative experience in which motherhood is the primary lens for understanding endometriosis (Edwards 2016; Downing 2019). By contrast, our narrative-medicine platform made room for more diverse stories that foreground work, sexuality, social life or mental health alongside, or instead of, fertility, and that explicitly recognise that not everyone wants children, as one contributor noted.
The Emotional Dictionary
The work conducted, and the collected stories in particular, underpin our forthcoming Emotional Dictionary of Endometriosis. The dictionary, inspired by Words Matter: An Emotional Dictionary – A Guide to the Key Words in Oncology (Antonelli and Micheletti 2023), is not a symptom list but a tool for reflection. Each entry combines short testimony, a plain-language definition, and commentary on how the term operates in medical and social contexts. Topics include “Pain,” “Fatigue,” “Mental Load,” “Support,” and “Care.” For people living with endometriosis, the entries name experiences that are often dismissed or fragmented in clinical talk, and can be used before or after appointments to clarify what they want to say and how they want to say it. For clinicians, the dictionary functions as a mirror: it shows how apparently neutral words (“chronic,” “benign,” “normal”) can land as fear, dismissal or relief, and offers alternative ways of framing uncertainty and long-term management. Like its oncological predecessor, it is meant as a shared vocabulary between technical language and lived experience, a resource for teaching, supervision and everyday practice as much as for patients themselves. The dictionary exists because people chose to speak, trusting that their words could help reshape how endometriosis is understood and addressed.
Endostand: translating reports, not feelings
Alongside these narrative tools, our collaboration with digital-health partners (Maynooth University’s Innovation Value Institute; Momentum, Ireland; and Vulgaroo, France) produced Endostand, an AI-supported platform that translates medical reports on endometriosis into clear, non-technical language. It is not a diagnostic device; it simply helps users understand the documents they already have: ultrasound results, surgical notes, specialist letters. Users upload a report and the system generates an accessible summary, explaining technical terms and abbreviations. The goal is simple: reduce the confusion and anxiety that accompany medical jargon and foster more equal conversations with clinicians.
Forthcoming training sessions for patients and professionals underline that Endostand is “a communication aid, not a doctor.” Participants compare original and simplified reports and discuss how language shapes emotion: which words feel cold, which explanations offer relief. A uterus described as “unremarkable” or “hostile” is not neutral; such phrasing affects how people experience their bodies. Both Endostand and the Emotional Dictionary insist that language is never just descriptive; it is formative. How we name pain determines how seriously it is taken. If you live with endometriosis or work with people who do, you can download Endostand via the #ENDOs platform and share your experience through this short survey.
Why method matters
Together, the literature review, story collection, Emotional Dictionary and Endostand tool model a way of doing medical humanities that is participatory and accountable. Stories are not embellishment; they are evidence. Novels and testimonies critique the systems that produce illness and neglect. Digital tools are not neutral; they encode assumptions about whose knowledge counts. None of this replaces the need for structural change in healthcare. Endometriosis will not become less painful because we coined a better metaphor. But if pain continues to be normalised, and clinicians still lack time or language to discuss uncertainty, the best clinical guidelines in the world will not be enough. Endometriosis will remain invisible as long as its stories are treated as optional extras. Our task is to keep insisting that they are central to knowledge, to care, and to justice.
About the author
Loïc Bourdeau is Lecturer in French Studies and Medical Humanities at Maynooth University and contributes to Work Package 3 “Tell the Story” of the #ENDOs project, with Avril Tynan (University of Turku, Finland) and Caterina Sciariada (DNM Lab, Italy). Find us on Instagram: endos_project.
The project is 100% GDPR compliant and the platform retains no personal information. It 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.
Acknowledgements
The photographs accompanying this piece are of an exhibition by Nadia Russell Kissoon. The exhibition was the product of Russell Kissoon’s ENDOSOROR artist residency in Kerala, India, supported by the French Institute and the Nouvelle-Aquitaine Region (Débat d’idées programme). Photographs of the exhibition were taken at the Alliance Française in Trivandrum.
References
Antonelli, Giuseppe, and Giacomo Micheletti. 2023. Words Matter: An Emotional Dictionary – A Guide to the Key Words in Oncology. Takeda Italia.
Ballard, Karen, Karen Lowton, and Jeremy Wright. 2006. “What’s the Delay? A Qualitative Study of Women’s Experiences of Reaching a Diagnosis of Endometriosis.” Fertility and Sterility 86 (5): 1296–1301. https://doi.org/10.1016/j.fertnstert.2006.04.054.
Charon, Rita. 2001. “Narrative Medicine: A Model for Empathy, Reflection, Profession, and Trust.” JAMA 286 (15): 1897–1902. https://doi.org/10.1001/jama.286.15.1897.
Cornec, Gaëlle. 2017. Précieuse. Histoire d’un enfant rêvé. Marabout.
Culley, Lorraine, Caroline Law, Nicky Hudson, Elaine Denny, Helene Mitchell, Miriam Baumgarten, and Nicholas Raine-Fenning. 2013. “The Social and Psychological Impact of Endometriosis on Women’s Lives: A Critical Narrative Review.” Human Reproduction Update 19 (6): 625–39. https://doi.org/10.1093/humupd/dmt027.
Downing, Lisa. 2019. Selfish Women. Routledge.
Edwards, Natalie. 2016. Voicing Voluntary Childlessness: Narratives of Non-Mothering in French. Peter Lang.
Fernley, Nicole. 2021. “‘That One Doctor…’: Qualitative Thematic Analysis of 49 Women’s Written Accounts of Their Endometriosis Diagnosis.” Journal of Endometriosis and Pelvic Pain Disorders 13 (1): 40–52. https://doi.org/10.1177/2284026520984366.
Gao, Xin, Yu-Chen Yeh, Jackie Outley, James Simon, Marc Botteman, and James Spalding. 2006. “Health-Related Quality of Life Burden of Women with Endometriosis: A Literature Review.” Current Medical Research and Opinion 22 (9): 1787–97. https://doi.org/10.1185/030079906X121084.
Giudice, Linda C. 2010. “Endometriosis.” New England Journal of Medicine 362 (25): 2389–98. https://doi.org/10.1056/NEJMcp1000274.
Hadfield, Rosamund, Helen Mardon, Diana Barlow, and Stephen Kennedy. 1996. “Delay in the Diagnosis of Endometriosis: A Survey of Women from the USA and the UK.” Human Reproduction 11 (4): 878–80. https://doi.org/10.1093/oxfordjournals.humrep.a019270.
Jones, Cara. 2016. “The Pain of Endo Existence: Toward a Feminist Disability Studies Reading of Endometriosis.” Hypatia 31 (3): 554–71. https://doi.org/10.1111/hypa.12248.
Lindeman, Tracey. 2023. Bleed: Destroying Myths and Misogyny in Endometriosis Care. ECW Press.
Malagré, Enora. 2019. Un cri du ventre. Robert Laffont.
Milot, Laëtitia. 2017. Le bébé, c’est pour quand? Michel Lafon.
Missmer, Stacey A., Frank F. Tu, Sanjay K. Agarwal, Charles Chapron, Ahmed M. Soliman, Stephanie Chiuve, Samantha Eichner, et al. 2021. “Impact of Endometriosis on Life-Course Potential: A Narrative Review.” International Journal of General Medicine 14: 9–25. https://doi.org/10.2147/IJGM.S261139.
Moradi, Marzie, Michelle Parker, Andrea Sneddon, Veronica Lopez, and David Ellwood. 2014. “Impact of Endometriosis on Women’s Lives: A Qualitative Study.” BMC Women’s Health 14 (1): 123. https://doi.org/10.1186/1472-6874-14-123.
Sorel, Rose. 2019. Je suis cette fille sur dix. Éditions de l’Archipel.
Steiger, Anne. 2018. Une araignée dans le ventre. Mon combat contre l’endométriose. Flammarion.
Wanström, Sofia. 2025. “It’s Not Normal to Be in Pain.” The Polyphony, July 9, 2025. https://thepolyphony.org/2025/07/09/not-normal-in-pain.
