A messy substance: Mediating the stigma and lived experience of endometriosis through participatory design

Endometriosis is a chronic condition often surrounded by taboo, silence, and misunderstanding. Although diagnostic uncertainty and epistemic tensions shape endometriosis care, little is known about how design can address the communicative and relational gaps between patients and gynaecologists. This article investigates how participatory and speculative design can support communication between these groups. Using a Research through Design approach, three co-design workshops were conducted with six individuals with endometriosis and five doctors. Participants created analogue artefacts including empathy maps, body maps, clay representations, written narratives, speculative futures and collective posters that materialised embodied pain, emotional burden and clinical perspectives. The workshops revealed how experiential and clinical knowledge can meet through material and narrative mediation, enabling mutual empathy and discursive practices of care beyond conventional consultation settings. The artefacts acted as mediators that articulated aspects of endometriosis that are difficult to verbalise, while highlighting resonances and divergencies between patients and doctors.

participatory design, feminist design, endometriosis, taboo DOI https://doi.org/10.21606/drs.2026.2583 Citation Vaz-Pires, C., and Melo, R. (2026) A messy substance: Mediating the stigma and lived experience of endometriosis through participatory design, in Simeone, L., Gray, C. M., Verhoeven, A., de Götzen, A., Bakırlıoğlu, Y., Zohar, H., Stead, M., and Buwert, P. (eds.), DRS2026: Edinburgh, 8–12 June, Edinburgh, United Kingdom. https://doi.org/10.21606/drs.2026.2583 Creative Commons License This work is licensed under a Creative Commons Attribution-NonCommercial 4.0 International License Included in A messy substance: Mediating the stigma and lived experience of endometriosis through participatory design Endometriosis is a chronic condition often surrounded by taboo, silence, and misunderstanding. Although diagnostic uncertainty and epistemic tensions shape endometriosis care, little is known about how design can address the communicative and relational gaps between patients and gynaecologists. This article investigates how participatory and speculative design can support communication between these groups. Using a Research through Design approach, three co-design workshops were conducted with six individuals with endometriosis and five doctors. Participants created analogue artefacts including empathy maps, body maps, clay representations, written narratives, speculative futures and collective posters that materialised embodied pain, emotional burden and clinical perspectives. The workshops revealed how experiential and clinical knowledge can meet through material and narrative mediation, enabling mutual empathy and discursive practices of care beyond conventional consultation settings. The artefacts acted as mediators that articulated aspects of endometriosis that are difficult to verbalise, while highlighting resonances and divergencies between patients and doctors.