[co]defining endometriosis-related injustices
This is an art and research project, not a medical resource. It was created in crip time — with care, slowness, and the particular logic of a neurodivergent mind working through pain and complexity. Parts of it were made with AI as a collaborative tool. Please bring generosity to any gaps, inconsistencies, or rough edges you encounter. All of it was made with love, rigour, and the belief that this work matters.
This framework names what medicine has refused to see. Nine types of violence — medical, epistemic, reproductive, economic, digital, political, environmental, racial, psychological, and relational — mapped, named, and defined by the Endo Violence Community.
Co-authored by Dr. Alicja Pawluczuk / HYSTERA and co-edited by Allison Rich, Director of the Endo Violence Collective — alongside an international community of survivors, researchers, artists, and advocates. Not a clinical model. A living terrain.
Endo violence was never meant to be a book. It began as an exhibition, became a zine, a collective, an academic article — and something larger still.
Disabled, neurodivergent endo violence survivor and Research Fellow at the University of Leeds (INCLUDE+ Network). Artist, researcher, and co-founder of the Endo Violence Collective. Initiated the framework in 2022 following the first endo violence exhibition in Berlin.
Director of the Endo Violence Collective, based in Miami, Florida. Filmmaker, advocate, and co-founder of the collective. Co-edited this book, led the community review process, and co-created the collective's infrastructure of care. Her film Not Normal brought her into collaboration with HYSTERA in 2023.
The framework emerged from lived experience, research, artivism, and years of navigating what happens when medicine refuses to believe you. It was co-created with an international community of researchers, artists, activists, and survivors.
This work follows collective authorship principles — the community is not an advisor, but a co-author. As Alicja writes: "I see Allison as the person who actually created the collective and the online endo violence community. Allison's care, dedication, patience, and the ability to hold space for others."
This interactive space combines an explorable terrain of the nine violence types, a living topography map, and a remix space where your voice extends the framework. It is open access, freely available, and designed to be remixed.
The word is not chosen lightly. It is chosen because it is precise.
Before writing about endometriosis as a political issue, there was a foundational question to sit with: what do we mean by violence? Not as an abstract question — as an urgent one. If we want to name something as endo violence, we must be clear about what kind of harm we are speaking about, and why that naming matters.
Violence, in this framework, is defined as the patterned production of harm through structural neglect, institutional silence, and cultural dismissal. It includes what is done — coercion, stereotyping, epistemic erasure — but also what is withheld: care, rest, diagnosis, dignity. It is not limited to visible or interpersonal acts. It is a structure, a system, a way of organising who matters and who is left out.
This matters because harm sustained through indifference, ignorance, and ideological positioning is still harm. Medical neglect is violence. Being disbelieved is violence. Waiting eight years for a diagnosis because of gender bias is violence. The word holds the weight that softer language cannot.
Endo violence is not meant to become a static framework for scoring degrees of injustice. It is a lens — one that names patterns, makes them legible, and opens space for collective resistance.
Transformative justice does not seek punishment — it seeks to understand and dismantle the conditions that produce harm. Applied here, it means asking not only what happened to individuals with endometriosis, but what systems, structures, and silences made that harm possible and persistent.
Endo violence as a concept resists the individualisation of suffering. It refuses the idea that harm is a personal failure or medical misfortune. Instead, it locates injustice structurally — in funding decisions, research priorities, clinical training, workplace policy, and the political economy of care.
Naming violence is the first step toward imagining its absence. Drawing on Judith Butler's work, nonviolence here is not passive — it is a form of resistance, a mode of world-building. It asks how we relate to one another, how care circulates (or fails to), and how systems uphold certain lives while abandoning others.
By dissecting what violence means, we make space to imagine what nonviolence could look like — not as an abstract ideal, but as a relational, collective, feminist practice.
click any node to expand — key statistics and sources from the book
These are not clinical categories — they are shifting, overlapping terrains of harm. Select any type to explore its definition and mechanisms.
Not a framework to diagnose others or a concept to commodify — a shared language of resistance, reflection, and repair. Here is how to apply it where you are.
Use endo violence to affirm your truth. When you feel gaslit, unseen, or dismissed, return to this language as a form of self-defence and solidarity. Let it be the balm for the guilt of not doing enough, the grief of lost years, the fury of being dismissed.
Resist the urge to tidy this up. Use it to disrupt what counts as knowledge. To centre the lived, the emotional, the contradictory. Healing justice in research means co-creating with, not studying from. Be transparent about power, credit community labour.
If reading this makes you uncomfortable — stay with that. Let it move you into action. Ask better questions: who benefits from the current system? Who gets heard, and who doesn't? Use endo violence to shift from treating symptoms to addressing structural neglect.
Let endo violence expand your frame. Chronic illness is a justice issue. It touches housing, labour, migration, environmental justice, and more. Make your movements accessible — not just theoretically, but practically. We're not always loud, but we're here.
Healing justice calls for structural accountability, not saviourism. Let endo violence humanise the data. Which nine types are already embedded in current policy failures? Where are the funding gaps that sustain epistemic and economic violence?
To support someone with endometriosis, start by unlearning what you think care should look like. Healing justice means listening without fixing, holding space without judgement. You don't need the right words — you need to keep showing up.
Endo violence looks different depending on where you are. Healthcare systems vary. Legal protections vary. Cultural norms around menstruation and pain vary. Here are prompts to help you locate the framework in your own context.
Select the types of endo violence most present in your context. This creates a visual map you can use in presentations, workshops, or advocacy. Click to toggle.
Your selection is personal and contextual — it does not rank or score endo violence types.
This reflection form helps you apply the endo violence framework to your specific context — whether for research, advocacy, clinical practice, or personal reflection. Fill it in, then use the print button to save or share.
Grounded in healing justice: go at your own pace. Skip what doesn't apply. Return when you're ready.
This framework is an invitation, not a conclusion. Select a type and use it as a starting point — to reflect on your own experience, research, or practice. What does this name for you? What does it miss?
← select a violence type to begin
Ask anything about the framework, the theory, or the community behind it. Grounded in the book's own language and ethics.
This companion draws on the full text of the book to help you explore what endo violence means for your context, understand the theory, or find words for experiences that have gone unnamed.
It will not diagnose, prescribe, or pathologise. It speaks in the language of the framework.
endo violence: living framework · interactive edition · 2025
University of Leeds · INCLUDE+ Network