Background This research highlights the role of natural, cultural and structural gaps which shape sickness experiences and social stigma of women with manifestations of female genital schistosomiasis (FGS), a neglected gynaecological condition resulting after untreated infection with urogenital schistosomiasis. We focus on using women’s shared experiences without them emerging as victims, but as voices for change, all activists and collaborators in the quest of their human rights, good health, and representation. Women take ownership and present their own interpretations capturing expressive, and symbolic aspects as persons living with a neglected tropical disease.

Method Focusing on ethnography and specific case studies of women manifesting symptoms of FGS within endemic rural fishing communities in Cameroon, we present illness experiences of women affected by FGS, drawing from a narrative method, and information on health service provision around FGS, to show the role of women and their histories in research on health, a frequently neglected angle.

Results Our results show how gendered power dynamics in decision making, and gendered experiences such as the need to manage menstrual health; as well as structural gaps, combine to bring an FGS mental health toll. Sub-fertility brings a heavy psychosocial toll from external blame and rejection, exacerbating the burden affected women experience of internalized stigma and the mental challenge of not being able to fulfill cultural standards, leading to exclusion.

Conclusion Gender-analysis is used to highlight missing gaps, and context embedded understanding which could be used to address neglected tropical diseases and their related psychosocial burden. With context-specific experiences portraying co-morbidity with mental ill-health and FGS as a neglected tropical disease, there is a need to prioritize women’s voices and mental-health management at policy level through a person-centred approach.

Funding: “Projet Lutte Contre Les Maladies Tropicales Négligées en Afrique Centrale” (MTN) [grant numbers BMZ-Nr 2015.69.227, BMZ 2016.68.797].