A new study, led by Sheffield Hallam University, examined how women discuss and challenge their interactions with healthcare providers related to heavy menstrual bleeding within online forums.
The findings identified two recurring ways of talking about and making sense of healthcare experiences. Firstly, that medical decision-making prioritises fertility over women’s wellbeing, and secondly, that women’s accounts of suffering are normalised, minimised or reframed as emotional.
The research also highlights the importance of these online forums where users who suffer from heavy menstrual bleeding can share stories, frustrations, and help advocate for each other, to position themselves as credible knowers of their own bodies.
Dr Emily Young, who led the study from Sheffield Hallam University, said: “Heavy menstrual bleeding is a common and debilitating condition, yet women frequently report inadequate treatment including dismissal, delays and mistrust when seeking care.
“These experiences are not simply anomalies; I would argue that they reflect a much longer history within medicine, including early gynaecological thinking that positioned women as ‘hysterical’ and the female body as unreliable. What we see in these accounts is that, even today, women describe their future fertility being prioritised over their current quality of life.
“There is a dual epistemic injustice here: women describe not being heard or believed when they speak about their own bodies, while at the same time the evidence base needed to understand and treat heavy menstrual bleeding remains limited. Women’s experiential knowledge has to be taken seriously.”
In online discussions, women describe a perceived focus on fertility at the cost of quality of life. Many describe having pain and experiences of heavy menstrual bleeding dismissed in favour of a focus on preserving fertility.
In some cases, women discuss their experiences of asking for a hysterectomy and feeling infantilised when healthcare professionals have told them they are “too young” or “will change their mind” about wanting children.
Discussions also reflect how the pain and disruption caused by heavy menstrual bleeding is routinely disbelieved, trivialised or pathologized as personal weakness.
Many of the forum users say they are met with minimisation of their symptoms, being told “it’s normal” or to “take the pill” and feel they are disbelieved and dismissed.
Some described how being repeatedly ignored and having their symptoms minimised led to severe physical and emotional consequences from delayed diagnosis and needing emergency treatment.
Across all discussions, users were validating each other's experiences, sharing in frustrations and anger, and advocating for each other. The online forums are a space where women with heavy menstrual bleeding can build solidarity, reclaim the discourse and resist medical dismissal.
These key discourses that recur across online discussions highlight a need to move away from fertility-centred clinical decision making and to recognise experiential knowledge as clinically meaningful.
Dr Young said: “The title of the paper comes from one of the women in the study, but ‘Gilead was meant to be a fiction’ captures something much bigger about where we still are. There are uncomfortable parallels in the way women’s autonomy and knowledge of their own bodies can be treated within healthcare.”
The full paper, “Gilead Was Meant to Be Fiction”: Medical Dismissal and Reproductive Governance in Online Discussions of Medical Interactions in Heavy Menstrual Bleeding by Dr Emily Young and Dr Heather Kirk is available online.
