An art-science experiment — use with caution

Endo Violence Mapping

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 — it extends beyond the medical field to encompass social, cultural, economic, digital, and environmental injustices.

▶About this project

Created by HYSTERA / @hystera.endo (Dr Alicja Pawluczuk), a disabled and neurodivergent person living with endometriosis.

Informed by the book Endo Violence: [Co]Defining Endometriosis Related Injustices (2025), authored by Alicja Pawluczuk/HYSTERA with the Endo Violence Community. Edited by Allison Rich, co-founder of the Endo Violence Collective and filmmaker of Not Normal (watch the documentary ↗).

This platform was built with AI tools — please always verify claims and consult original sources.

This is an open-source artivism project intended to support advocacy, education, and collective knowledge-building. All research, studies, and external sources cited remain the intellectual property of their respective authors — I claim no copyright over referenced works. You are welcome to adapt, remix, and share this resource for non-commercial purposes.

Contact: a.pawluczuk@leeds.ac.uk or DM on Instagram

Type of violenceEvidence (on select)Data point (on select)

Select a type to open it · its evidence fans out · select again to close

Scroll to contribute ↓

What is Endo Violence?

Endo violence refers to the systemic, structural, and interpersonal forms of harm, oppression, and neglect experienced by individuals with endometriosis.

Endo Violence artwork - a surreal pink anatomical sculpture representing the different forms of violence experienced by those with endometriosis, labeled with Medical Violence, Reproductive Violence, Digital & Algorithmic Violence, Environmental Violence, Racial & Ethnic Violence, and Relational Violence

Art · Mixed Media · Produced by HYSTERA

Rooted in medical misogyny, ableism, racism, colonialism, and socio-economic injustice, it manifests through:

Misdiagnosis and medical gaslighting
Inadequate healthcare access
Gendered and racial health disparities
Widespread dismissal of endometriosis as legitimate or debilitating

It extends beyond the medical field to encompass social, cultural, economic, digital, and environmental injustices. It is, in the framework's own words, both a theoretical lens and a community-led practice of resistance and advocacy — grounded in intersectional and feminist analyses.

Endo violence is structural, epistemic, interpersonal, affective, digital and environmental — a layered, shifting and intersectional terrain, not a flat clinical model.— Endo Violence (2025)

At its root

Structural
embedded in systems
Epistemic
who gets to know and be known
Interpersonal
family, work, intimacy
Affective
grief, rage, numbness, shame
Digital
moderated, surveilled, performed, erased
Environmental
extractive economies, contaminated lands

Endo Violence: [co]defining endometriosis related injustices - Book cover by Alicja Pawluczuk PhD / HYSTERA with the Endo Violence Community

Click to visit endoviolence.com

Why the word "violence"?

The word is not chosen lightly. It is chosen because it is precise. Violence, in this framework, is the patterned production of harm through structural neglect, institutional silence, and cultural dismissal — what is done, but also what is withheld: care, rest, diagnosis, dignity.

Endo Violence — “On naming / why we use the word violence”

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 (2025)

Nonviolence is not simply a passive practice or a moral ideal. It is an ethical obligation arising from the understanding that we are fundamentally dependent on one another.— Judith Butler (2021), cited in the framework

Resource Mapping & Mutual Aid

Community Tools

Draft — contextualise in your own workDownload printout

The purpose of this map is to help you discover the invisible networks and actors that might support you — and to identify the gaps between services or missing resources. For this example, we use UK-based resources, but the framework is designed to be adapted for any location. Select a violence type to reveal connected resources.

By mapping what exists and what is missing, we can help each other, build new networks, and advocate for better services.

Edited by Allison Rich, co-founder of the Endo Violence Collective and filmmaker of Not Normal.

Note: Examples shown are UK-focused. Adapt the questions to map resources in your own region.

Select a violence type to reveal connected resources

A living, collective project

Contextualise it in your community

Endo violence lives in systems, not just in individual bodies — so understanding it, and doing something about it, happens together. This framework was co-defined with people living with endometriosis, and it is meant to keep growing. You are warmly invited to bring it into your own context.

Contextualise it where you are

Talk to the book, then sit with how the framework lands in your own life and community. The point is not more data — it is meaning, named in your own words and your own place.

Map what exists and what is missing

Use the community resource map to chart local and online support — anywhere in the world. Share back what you find so others nearby do not start from zero.

Host a small Clinix

Borrow the method: a room, some tea, zine-making, and people who believe each other. The printable guide walks you through it. No funding or permission needed.

Remix the open framework

The book is open-source for non-commercial use. Translate it, adapt the ten types to your context, add what is missing, and pass it on.

Guided by healing justice: this is not about blaming any individual clinician or organisation. It is about understanding how systems join up — and what becomes possible when communities come together.

How to use this resource

Ideas for different audiences

This framework and map can be used in many ways depending on your context and goals. Here are some starting points for different stakeholders.

People with endometriosis

Use the map to identify which types of violence you have experienced — it can help validate your experiences and find words for what you've been through
Share specific nodes with healthcare providers to explain the systemic nature of your struggles
Connect with others who have experienced similar forms of violence — you are not alone
Use the framework to advocate for yourself in medical appointments or workplace accommodations
Explore the research nodes to find peer-reviewed evidence that supports your lived experience

Allies, partners & employers

Explore the map to understand the breadth of challenges faced by people with endometriosis — it's not just period pain
Use the economic violence node to understand workplace impacts and create better accommodation policies
Share the resource with HR teams to improve menstrual and chronic illness leave policies
Learn about psychological violence to better support loved ones without toxic positivity
Understand relational violence patterns to examine your own interactions and improve support

Healthcare practitioners

Use the medical violence node to reflect on diagnostic delays and gaslighting patterns in your practice
Explore epistemic violence to understand how patient knowledge is often dismissed or devalued
Review the research linking pain dismissal to gender and racial biases in clinical settings
Integrate the framework into patient consultations to create more trauma-informed care
Use the map in training sessions to educate colleagues about systemic healthcare failures
Consider how reproductive violence manifests in fertility-focused care that ignores pain management

Researchers & academics

Use the map as a literature review starting point — each study node links to its DOI
Explore underresearched intersections between violence types (e.g., digital + racial, environmental + economic)
Cite the framework to position endometriosis within broader health justice and disability studies
Use the epistemic violence framework to examine knowledge production hierarchies in your field
Design research that centres patient experience rather than clinical outcomes alone
Collaborate with the Endo Violence Collective on community-based participatory research

Activists & campaigners

Use the political violence node to identify policy gaps and campaign targets
Share the map in awareness campaigns to show endometriosis as a systemic justice issue, not just a health condition
Connect your campaigns to broader movements — disability rights, gender equality, health justice
Use the digital violence node to advocate against platform censorship of menstrual health content
Organise community mapping workshops using this framework as a template
Advocate for research funding by highlighting the knowledge gaps shown in the map

Policymakers & institutions

Use the map to understand the multi-dimensional nature of endometriosis care gaps
Review economic violence data to understand the true cost of inadequate healthcare provision
Examine environmental violence connections to inform chemical regulation policies
Use the framework to develop comprehensive endometriosis strategies that address structural barriers
Consult with the Endo Violence Collective when developing health policies
Fund research into the intersections identified in the map, not just biomedical solutions

How to cite

Pawluczuk, A. (HYSTERA), with the Endo Violence Community (2025). Endo Violence: [Co]Defining Endometriosis Related Injustices. Available at: endoviolence.com (Accessed: June 12, 2026)

This is a living document. The framework continues to evolve through collective practice and feedback. When citing, please include your access date (as shown in the citation above).

This resource was created with the assistance of AI tools and on crip time — honouring the author's experience as a disabled and neurodivergent person living with endometriosis. While we strive for accuracy, please always verify sources and consult the original research linked throughout.

About Us

Meet the Endo Violence Collective

We are a community of people with endometriosis, researchers, artists, and activists working together to name, map, and challenge the systemic injustices faced by those living with this condition. Through art, research, and collective action, we aim to transform how endometriosis is understood, treated, and talked about.

Visit endoviolence.com

Zines & Publications

Magazyn Collection

A series of community-driven zines exploring endometriosis-related injustices, personal stories, and collective knowledge. Click to read online.