Endo Violence Collective

In 2025 we published a book about and violence by and edited by thanks to the support of .violence.collective and expert reviewers

Our work is free to access and created without funding (see: economic endo violence 🕊️). These images are models from a crip time zine work in progress. We are here because of this community and deeply grateful

What does burn out mean in the context of endometriosis?

Guten Morgen, ✨️

Have you booked your space at our Endo Violence Think-in yet?

Tomorrow we open Breaking the Silence, an exhibition curated by .

And in just 2 days, we gather for the Endo Violence Think-In and a series of workshops.We are honoured to be joined by powerful voices asking:

How can their work help us co-create endo violence-free futures?

🟡 Anika König, co-founder of In*visible:

“In our research, we’ve identified four key issues shaping the sexual experiences of people with endometriosis: pain, shame, gendered expectations, and medical neglect. We invite participants to take these as a starting point for rethinking sexuality in the context of endometriosis.”

🟣 Alekszandra Rokvity, Endo Violence Collective:

“Medical gaslighting is one of the staples of the endometriosis experience and a key source of endometriosis-related violence. How and why does it happen? What role does it play in narrating endo experiences? And what do we mean when we say it’s an act of violence?”

🔵 Rachael Jablo, Endo Violence Collective:

“The work I’m showing in Breaking the Silence explores shame and gendered language in endo and other health conditions. At the Think-In, we’ll discuss how to be loudly, hysterically, chronically ill—defying the toxic positivity thrown at us.”

📚 Don’t forget to check out our new publication endo violence: [co]defining endometriosis related injustices — free, open-access, and made to be shared.

📝 Register now for the Think-In & workshops via www.endoviolence.com

Hello , our Endo Violence adventure started here in 2023 [or was it 2022?] & now we're back to spread some news about our ongoing work & this Endo Violence Think-IN session.

This seminar is organised as part of .academy .tinbox Breaking the Silence Exhibition curated by . Throughout the exhibition you'll be able to experience some incredible from our collective members such as
,
, and .

We will be posting more about both events soon.

👑 it's International Labour Day 👑

Today, we honour a different kind of labour—the quiet, relentless, and often invisible work of those advocating against endo violence.

This is not symbolic appreciation. This is a political recognition of the unpaid, unresourced, and often uncredited labour of artists, activists, researchers, and cultural workers navigating chronic illness, medical neglect, and systemic misogyny—all while trying to hold space for others.

We’re not talking about resilience as performance. We’re talking about strategic survival within hostile systems.
The work of holding grief while moderating Instagram comments.

Of building archives from pain.
Of writing theory between surgeries.
Of showing up, not for recognition, but because we know silence is violence too.

This is labour shaped by hyper[in]visibility. We are simultaneously too visible (flagged, shadowbanned, dismissed as “too emotional”) and not visible enough to be included in research funding, institutional partnerships, or policymaking spaces.

But this is not victimhood.

We are not passive recipients of care—we are architects of new frameworks.
We are not “overly emotional”—we are responding to structural neglect with the emotional clarity it demands.
We are not broken—we are adapting inside systems that were never meant to support us.
We are not disorganised—we are working within conditions of dynamic disability, digital violence, and deep epistemic erasure.
We are not waiting to be saved—we are building endo violence free futures.

This is what transformative justice asks of us:
To resist punishment and productivity narratives.
To centre care over cure.
To see our collective work not just as survival, but as knowledge production, healing practice, and strategic disruption.

On this International Labour Day, we invite you to reflect with us:

💡 What forms of labour in endo advocacy have you done that no one saw—but that mattered?

💡 How do you define value when the work isn’t paid, published, or praised?

💡Where do you feel your labour is most invisibilised—and by whom?

As part of we're sharing bits of our Endo Violence Publication (authored by dr Alicja Pawluczuk with support of endo violence community. The full publication will be available on our website in the coming weeks - we're embracing crip time.

TEXT:

"Frequently stuck in a cognitive dissonance formed by conflicting narratives such as “your pain is not real,” “your pain is normal,” and “aren’t you better yet?” Many of us are framed as passive subjects whose embodied experience of endometriosis is invalid by default.

Such a linear and extractive view of chronic illness and disability has been contested by crip scholars (e.g., Kafer, 2021; Samuels & Freeman, 2021) and disability scholars (e.g., Hogan, 2019; Marks, 1997). Samuels and Freeman (2021) critique the medical view that “conceives disability and illness in linear temporal terms, such as prognosis, remission, recurrence, chronic, and/or terminal” (2021:245).

Leaving no space for a socio-economic understanding of disability, the medical model focuses on curing or mitigating the disability to fit into an able-bodied society (Hogan, 2019; Marks, 1997). The idea of overcoming one’s disability is also reflected in some contemporary narratives of "fixing endometriosis" (e.g., by changing your mindset).

Such emphasis on individual responsibility for one’s disability perpetuates a violent cycle of shaming, blaming, and pathologising female bodies for simply not trying hard enough.

Personally, I’ve dedicated years of my life to trying to fix myself using different supplements and diets. Each attempt to cure myself would begin with high hopes and motivation, but often lead to disappointment, self-doubt, and hopelessness. With each failure to reach my desirable healthy and fit self, I’d question my ability to function as a human being altogether.

[remaining text in the comments]

Hey, Endo Violence folx, it's here. I'll be taking over this account from the one and only for a bit. I'm also the person behind the never-ending endo violence text...

In the coming days, I'll be taking some time to share bits of the text as well as the thinking process behind it. I'm overwhelmed with the positive feedbacks so far, but the fear of getting this publication wrong [whatever that means] is something I cannot shake off - probably because of my background in academia and the tyranny of academic writing.

Anyway, as part as the behind the scenes thinking process, I'm publishing this analysis made using Google's new tool - it's surreal and serves as a perfect procrastination tool.

gynecology as a weapon: the violent foundations of gender health inequalities book excerpt from “endo violence:
[co]defining endometriosis related injustices”

written by dr Alicja Pawluczuk

a free book that will be released on crip time
with support & contributions from the .violence.collective community

Our Endo Violence publication is intended for a diverse audience, including those living with endometriosis, healthcare professionals, researchers, advocates, and policymakers. It aims to provide a framework for understanding the systemic injustices associated with endometriosis and to foster dialogue on addressing these issues.

🔹 For individuals with endometriosis & their supporters – This text offers insights into the challenges of navigating a complex medical condition, validating lived experiences, and providing tools for advocacy and self-education.

🔹 For allies & caregivers – Whether you are a partner, friend, family member, or employer, this publication offers guidance on how to better support individuals with endometriosis by understanding the medical, social, and economic barriers they face.

🔹 For activists & advocates – Those working in health justice, disability rights, and gender equality may find useful perspectives on how endometriosis fits within broader social and political discussions, helping to inform policy and advocacy efforts.

🔹 For researchers & academics – This publication contributes to interdisciplinary conversations on gender, healthcare disparities, medical bias, and digital activism, encouraging further study and critical analysis.

🔹 For healthcare professionals & policymakers – By providing insight into the lived realities of those with endometriosis, this text challenges existing healthcare structures and highlights areas for improvement in diagnosis, treatment, and patient care.

🔹 For those studying gender health disparities – Endometriosis is one example of a broader issue: the neglect of conditions that disproportionately affect women and gender-diverse individuals. This publication connects endometriosis to systemic health inequalities and the need for an intersectional approach to healthcare.

We, the Endo Violence Collective, are thrilled to announce the upcoming publication of "**Endo Violence: [Co]defining Endometriosis Related Injustices**" by Dr. Alicja Pawluczuk / HYSTERA , launching during .

This is how we want to begin—slowly, intentionally, and collectively engaging in conversation Throughout this month, HYSTERA will be sharing chapters from the publication, which will be available for download on our website. The full publication will be released at the end of the month. However, because we are operating on crip time, we are unable to provide you with specific dates—this process unfolds at the pace of our bodies and our realities.

we begin by publishing our first post later today: endo violence: [co]defining endometriosis related injustices :
who is it for?

Endometriosis time feels like…

My love language is


💓 Endo violence free
💕 Endo solidarity