Paper short abstract:

This paper aims to explore lived experiences of inaccessible or missing medical knowledge related to reproductive, sexual and hormonal conditions mainly affecting women. This, in relation to patients’ efforts to navigate, negotiate and give meaning to their illness and healthcare experiences.

Paper long abstract:

In 2020, a Swedish social media movement was initiated with the hashtag: #alltserfintut (Wigen, 2020). It translates to “everything looks fine” and represents a sentence heard from healthcare providers when seeking treatment for pregnancy or birth induced injuries. Through #alltserfintut, individuals share experiences of dismissal and not accessing care, express dissatisfaction, seek support, information and alternative ways to deal with their situation. Similar experiences and digital communities can be found regarding other conditions and illnesses related to reproductive, sexual and hormonal health, mainly affecting women. Oriented from and in relation to such contexts, this working paper analyses material collected through ethnographic in-depth interviews with individuals suffering from severe perineal trauma, endometriosis and vulvodynia.

When patients contact healthcare services they are seeking medical treatment, but they also seek knowledge in order to make sense of their experiences. This paper focuses on the latter aspect. The research participants express uncertainty coming from a lack of knowledge about their conditions, which makes it hard for them to understand and communicate what they are going through – both in terms of being denied a diagnosis, and in terms of a general lack of knowledge about these gendered medical issues. Here, I aim to explore lived experiences of inaccessible or missing medical knowledge, in relation to the patients’ efforts to navigate, negotiate and give meaning to their illness and healthcare experiences. This is analysed from a phenomenological perspective, and in relation to the concept epistemic injustice, and especially the aspect ‘hermeneutical injustice’ (Fricker, 2007).