endo violence: [co]defining endometriosis related injustices [publication will be available on our website in March 2025]
endo violence: definition
Endo violence refers to the systemic, structural, and interpersonal forms of harm, oppression, and neglect experienced by individuals with endometriosis. Rooted in medical misogyny, ableism, racism, colonialism, and socio-economic injustice, endo violence manifests through misdiagnosis, medical gaslighting, inadequate healthcare access, gendered health disparities, and the widespread dismissal of endometriosis as a legitimate and debilitating condition.
Endo violence extends beyond the medical field, encompassing the social, economic, digital, and environmental injustices that shape the lived experiences of those affected. It includes the historical pathologisation of individuals with uteruses, reproductive coercion, the economic burden of costly treatments, workplace discrimination, and the censorship or silencing of endometriosis narratives in digital and public spaces.
As a concept, endo violence is both a theoretical framework and a community-led practice of resistance and advocacy, grounded in intersectional and feminist analyses. It seeks to expose and challenge the mechanisms of harm that sustain endometriosis-related injustices while fostering solidarity, collective action, and systemic change.
it takes a community:
My endo survival story is strongly intertwined with endometriosis online communities. I would not be here if it wasn’t for the support of the community, especially the Endo Violence Community.
Digital communities helped me stay hopeful through some of the darkest health-related moments of my life—especially after my second laparoscopic surgery in 2016, when my health significantly deteriorated. This is also when I decided to set up my @hy_stera Instagram account and experiment with art to document my hopelessness, fear, and pain. Evidence shows that online support groups and social media platforms play a crucial role for people with endometriosis, offering therapeutic affordances such as connection, exploration, narration, and self-presentation (Shoebotham & Coulson, 2016; Bologna et al., 2024).
At first, my suffering was strategically disconnected from my professional social media, where I carefully curated the able-bodied version of myself. Being an openly disabled and “hysterical” artist was never something I planned for—but it happened anyway. After sharing artworks publicly and taking part in exhibitions, in 2022, I was approached by Helen Sange—the founder and owner of Obenrum Untenrum / Inclusive Gynaecology and Sexual Medicine in Berlin. Helen invited me to have an exhibition at her newly opened gallery in Berlin. This is when and why the concept of ‘endo violence’ was officially born.
In preparation for the exhibition, I reached out to the online community with the question: What does ‘endo violence’ mean to you? I received about a dozen responses, which were later displayed in the gallery. Below is an example of one of these powerful ‘endo violence’ truths:
I think of a long history of patient dismissal and patient blaming, one stretching back 2000–3000 years. I think of barbaric treatments like transvaginal leeching, bondage, vivisection, experimental drugs. I think of overdoses, suicides, the loss of ability and life. I think of the systemic erasure and gaslighting of millions of people—people in pain.
— Eileen (they/she)
This exhibition served me as a first opportunity to interact with people’s understanding and experiences of endo violence. Although many of the visitors talked to me how the notion resonated with them, there was one person whose opinion stuck with me. A British woman walked into the gallery and ask me the following questions: “Do you know what the word violence mean [as a non-English native speaker]? It feels a bit over the top and perhaps you should change it to something more subtle?”. I keep thinking about her suggestions and still wonder if the word violence is, in fact too violent?
Following the exhibition, I began working on a research project focusing on ‘endo violence’ temporalities and digital [in]visibilities at the University of Leeds. Working alongside the INCLUDE+ Team as a Research Fellow, I was able to feel safe, understood, and supported enough to commit more time to critically investigating what ‘endo violence’ might mean in theoretical terms. None of this work would be possible without the support and guidance of Professor Helen Thornham and Rosie Wilkinson.
As a Research Fellow, I published the first edition of the ‘endo violence’ magazyn. This was later followed by an open call for the second edition, which led to the creation of the ‘Endo Violence’ Collective in 2023. Led by Allison Rich—an organiser and artist who translates interdisciplinary ideas into film (such as Not Normal)—the role of the collective has been instrumental in getting this publication written.
Many people have read through the text and added their input (their contributions are listed on the front and throughout this text). However, the impact of the Endo Violence Collective goes far beyond theoretical contributions. The ongoing support, collective care, and emotional/invisible labour involved in co-creating a broader understanding of endo violence is invaluable.
There were many times when I was ready to give up writing this text (or my art, for that matter)—but each time, the collective provided me with a safe space to share my vulnerabilities, heal, get inspired, and return to writing. Then there is the never-ending learning from how the collective operates and how it interacts with the wider community. I’m aware that so much invisible and unpaid labour goes into endometriosis activism, and balancing meaningful engagement without self-exploitation feels almost impossible.
For now, I choose to see this work as a collective experiment in space- and meaning-making, one that is not bound by specific impact outcomes. As the process continues to be messy and unpredictable, I see this publication as one of the defining steps in the Endo Violence Collective’s mission and its practices of community-building and artivism.
The process of working on ‘endo violence’ has been one of revisiting stories, lived experiences, and histories—piecing together fragments of personal, collective, and academic knowledge into a bigger picture. Each testimony, each artwork, each moment of frustration or grief adds another piece to the puzzle. And although this puzzle is never quite complete, each step forward is a refusal to let endo violence remain invisible, unspoken, and unchallenged.
a note from Allison Rich
In 2023, I had the privilege of connecting with Hystera, the author of this book, when she invited me to contribute to ‘endo violence’ Magazyn. Exploring her social media, I was struck by the power and visibility of her artwork. It sparked a curiosity within me – how did this incredible artist find the time and resources to create a magazyn? And how did she connect with talented artists creating work about endo? As the second edition of the magazyn took shape, Hystera extended an invitation for all contributors to become co-creators. Recognizing the immense effort required to produce such a publication, I embraced a collaborative approach and jumped into the nitty gritty.
The collective creative work showcased in the magazyn is vital for amplifying the voices of those affected by endometriosis. It serves as a powerful counter-narrative to the systemic forces that seek to suppress and silence individuals with endometriosis. This issue extends far beyond those directly experiencing endometriosis; it is a stark illustration of the pervasive medical misogyny that perpetuates a global culture of ‘endo violence’ and extends across gendered medicine, incurable illness, and dynamic disability.
After supporting the release of the magazyn, Hystera asked me to “stay on” to continue our collaboration. Upon completion, distribution of the magazyn became a challenge.
Together, we explored traditional media outreach strategies, such as press releases, and experimented with approaches to community building like international doodle parties. We began to articulate and validate experiences that had often been felt in isolation. We established a social media presence, and it was remarkable to witness the rapid growth of our online community which engaged institutions and individuals far beyond the digital endometriosis space. We also encountered resistance. A single post addressing the censorship of endometriosis art resulted in an immediate, sustained decline in engagement. Despite these challenges, we remained undeterred. I wrote about a term that I think can accompany ‘endo violence’, endo grief. Endometriosis is chronic loss.
I utilised strategies like hashtag ant trails and digital scavenger hunts to uncover creative works addressing medical misogyny from around the world, spanning from Iran to Mexico. Writers, artists, and creators from diverse backgrounds are challenging traditional boundaries and building regional movements to raise awareness about endometriosis, even amidst the exhaustion and burnout that often accompany such advocacy. We released a third magazyn in hopes of expanding coalitions and I created a network of volunteer editors but the tensions of labour pushed past unfunded capacity. We held a panel at the University of Graz’s Endometriosis Revolution organised by Alekszandra Rokvity and featuring a keynote by the collective’s Rachael Jablo.
We are committed to fostering a niche within the cultural landscape as a means of empowerment and healing. While this work should not fall solely on the shoulders of those affected by endometriosis, and while it should not be relegated to invisible or unfunded labour, we recognize the historical reality that movements often struggle to sustain momentum without volunteers. We cannot achieve a visibility movement alone. We need institutional support to catalyse our efforts and integrate them into broader equity initiatives. The Collective is larger than Hystera or I…and it includes contributions from amazing co-creators like University of Leeds and artists featured in issue 2 like Angie Mashford Scott. Together, we are challenging dominant narratives that perpetuate medical misogyny and silence.
A year has passed since Hystera and I established the ‘endo violence’ Collective. In that time, it feels as though we have constructed a life raft, capable of carrying the experiences of those with endometriosis into the realm of visibility. Perhaps the integration of creative work into mass media is the key to fostering collective awareness and understanding. The challenges ahead are immense, with countless medical emergencies and capitalist systems that devalue our lives. The possibilities are equally immense for creative collaborations that weave endometriosis into culture.
The collective is evolving and adapting as we transcend individual limitations. The ‘endo violence’ Collective is a necessary and powerful response to the critical work initiated by Hystera – the work of naming and challenging the multifaceted and ever-evolving nature of ‘endo violence’.
Endo Violence Collective 