endo violence and digital [in]nvisibility: the censorship of endometriosis narratives online

INCLUDE+ Network
7 min readMar 1, 2024

Affecting 1 in 10 people assigned female at birth (and an unmeasured number of transgender and gender-diverse individuals), illuminated a broader societal neglect termed “endo violence”.

Endo violence encompasses systemic injustices, manifesting as health, social, economic, and digital disparities. As we have learnt in recent months, a significant aspect of endo violence is the digital invisibility of endometriosis stories, exacerbated by censorship and shadow banning on social media.

art by HYSTERA (dr Alicja Pawluczuk)

My research within the INCLUDE+ Network delves into the intersection of endometriosis-related violence and digital inequalities. The project aims to shed light on how digital practices, such as shadow banning, affect the visibility of endometriosis narratives, impacting the broader discourse on menstrual health, chronic illness, and [invisible] disability. Also, at Endo Violence Collective (co-founded by Allison Rich), we argue that policing of endometriosis content perpetuates silence and marginalisation of this disease.

[digitally] unequal: how shadow banning reinforces existing forms of marginalisation

Shadow banning, a form of digital censorship where content is hidden from wider audiences without notification, disproportionately silences discussions around female health, including endometriosis. Such practices not only restrict the dissemination of information but also reinforce stigma around menstrual health.

Shadow banning, a subtle form of censorship employed by social media platforms, operates by making a user’s content invisible or less visible to others without the user’s knowledge. This can significantly silence and marginalise voices, especially those from already marginalised communities. The process isn’t merely about the immediate invisibility of certain posts or topics; it extends to how content moderation algorithms unevenly flag and filter content, exacerbating existing gender inequalities and other forms of social disparity.

The impact of shadow banning is not just about the direct suppression of language and content. It also concerns the way these moderation practices disproportionately affect certain groups over others, often those discussing topics related to gender, health, and rights.

For instance, discussions around conditions like endometriosis, which are crucial for raising awareness and support, are hindered when algorithms mistakenly or deliberately flag them as sensitive or inappropriate. This uneven application of content moderation policies can silence essential conversations, violently pushing them into the shadows of online discourse.

Let’s not forget about the accumulation of these moderation actions over time, coupled with the pre-existing classifications of sub-genres of content that platforms deem controversial or not advertiser-friendly, further entrenches these voices into marginalisation. This ongoing cycle not only diminishes the visibility of important health and gender-related content but also reinforces a digital hierarchy where certain narratives are privileged over others. Ysabel Gerrard and Helen Thornham describes such digital power control systems as sexist social media assemblages that mirror longer-standing anxieties around the out-of-control female body.

censoring endometriosis content: what do we know so far?

Instances of censorship have been reported over the years, as we can learn from Jenna Farmer’s 2021 article. Advocates and social media users shared that their content related to endometriosis was being edited, removed, or resulted in account blocks.

This included posts sharing personal experiences, fundraising efforts, and informative content about the condition under vague community guidelines. Similar issues were also reported by Endometriosis UK back in 2021.

As we’re entering endometriosis awareness month in 2024, artists like Iness Rychlik and Georgie Wileman, have also faced shadow banning and content removal. Rychlik’s self-portrait photography and Wileman’s work on the realities of living with endometriosis were censored.

“In my case, it happened that merely 10 minutes after posting photos of my post-surgery wounds, I received a notification that the content had been removed. Not for being too graphic, but for sexual solicitation. It’s as if a naked woman in art is always seeking sexual attention. My post was reinstated, but my account remains shadowbanned to this day.

Of course, there is no transparency regarding which works are in question, but I suspect it’s because of nudity, likely related to endometriosis. Plus, my works on the diminishment of women have been censored for years. I suspect someone reports me because they dislike my views” — said Iness Rychlik

Similar issues were experienced by the Project 514 415 community, whose content has been wiped off different Meta platforms.

Certain members of the team involved with Project 514 415 had been stopped from doing anything their accounts until a specific link was removed from their profile BIO and across their Meta platforms. They agreed to remove to have access again, while they disputed with Meta. This has been a 2 week battle with Meta contacting with promises of it being looked into. The website in question is their project website, and a few of the team members linktr.ee accounts. All with the focus of either sharing the lived experiences of endometriosis, advocacy or support for the endometriosis community. The reach to get outsiders in society to see the REAL happenings within the community is being withheld. The new spam update Meta has done has caused an added influx of discrimination to many organizations and business that are based in womens health and endometriosis.

- reported Chelsea Hardesty (Ohio based, USA Lead for the Project 514 415 and the founder of Getting Better with Endo).

Image source: screenshots provided by Chelsea Hardesty

The escalation of censorship was evident when the hashtag ‘Stop Censoring Endo,’ created to protest the censorship of endometriosis content, was itself banned, and all posts utilising it appeared to be hidden. This stifled the conversation around endometriosis and underscored the issue of social media platforms censoring content related to endometriosis under inconsistently applied community standards.

Image source: screenshots of Georgie Wileman’s Instagram account.

My personal story of [digital] endo violence is related to the use of AI image-generated engines. After playing around with endometriosis tissue as an art material (and creating some cool project ideas), my content was later marked as “not meeting content moderation standards”. After establishing that endometriosis tissue is considered gore, I was only able to produce a series of cute-looking uteruses (please note that endometriosis can be found in all areas of the body).

My endometriosis Barbies are no longer accessible on my account as they now do not fit into content moderation standards.

These experiences of censorship demonstrate the ongoing struggle for visibility and understanding of endometriosis in digital spaces. The work of advocates and artists is crucial in challenging the stigma and silence surrounding the gender health gap and gender pain gap. As it stands, the digital censorship we encounter hinders awareness efforts, perpetuating the cycle of endo violence by rendering these experiences invisible.

[digital] endo violence in the making?

This aspect of digital erasure and violence against those discussing endometriosis on platforms like Instagram and Facebook highlights a critical area of concern within the broader discourse on content moderation.

Are, C., & Gerrard, Y. (2023). Violence and the feminist potential of content moderation. In The Routledge Companion to Gender, Media and Violence (pp. 473–482). Routledge

The work of Carolina Are and Ysabel Gerrard (2023) on digital violence and content moderation is essential to understanding the dynamics at play in endo violence. Their research into how social media platforms’ policies and practices disproportionately silence and marginalise communities is directly relevant to the experiences of those advocating for endometriosis awareness. The parallels between the cases studied by Are and Gerrard and the censorship faced by the endometriosis community underscore a shared struggle against digital erasure — which in my opinion, is yet another manifestation of endo violence.

Are and Gerrard’s insights into the feminist potentials of content moderation provide a valuable framework for rethinking how social media platforms could better support marginalised voices, including those affected by endometriosis. Their emphasis on a feminist approach to content moderation, which prioritises the needs and voices of those historically marginalised, offers a pathway towards more inclusive digital spaces where discussions on health and gender are not silenced but amplified. However, to make this happen, endometriosis content creators, activists, and artists (alongside other chronically ill individuals) need to be taken seriously offline and online — and not, as I argued elsewhere as digital hysterics.

The shadow banning and censorship of endometriosis content and actions against hashtags like ‘Stop Censoring Endo’ call for a re-evaluation of what seems like ableist content moderation policies by social media platforms.

There’s a critical need for these platforms to support, rather than hinder, the efforts of artists, activists, and communities in raising awareness about conditions like endometriosis. Recognising the importance of artistic expressions and advocacy is essential for fostering a more inclusive and understanding digital environment for health discussions.

The digital censorship and shadow banning of endometriosis content on social media platforms highlight a broader pattern of endo violence and show how bodies do not fit into the capitalism and algorithmically driven fetishisation of able bodies.

Our lived experiences of endo violence narrations highlight the need for social media platforms to reconsider their content moderation policies. Recognising and supporting the dissemination of information and awareness efforts about endometriosis is crucial for breaking the cycle of endo violence, ensuring those affected are seen, heard, and supported.

Has your endometriosis been censored online? I would love to hear from you as part of my research a.pawluczuk@leeds.ac.uk

References:

Are, C., & Gerrard, Y. (2023). Violence and the feminist potential of content moderation. In The Routledge Companion to Gende

Gerrard, Y., & Thornham, H. (2020). Content moderation: Social media’s sexist assemblages. New Media & Society, 22(7), 1266–1286.

Pawluczuk., A. (2023). What is Endo Violence? https://endoviolence.com/

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INCLUDE+ Network

Exploring how social and digital environments can be built, shaped and sustained to enable all people to thrive. Funded by EPSRC Equitable Digital Society.