A study of patient and clinician perspectives
Endometriosis is a menstrual disorder that is not well understood despite being very common. Around 10% of menstruating people have it, and experience chronic pain that can be debilitating, as well as other issues like infertility, bowel and urinary problems, fatigue, and mental health struggles. For those with endometriosis, tissue similar to that which lines the uterus forms in other parts of the abdomen; this tissue responds to hormonal changes and can bleed during the person's period. Time to diagnosis in the UK is 7 years on average, and there is currently no cure or reliable treatment options. Both patients and clinicians struggle with managing this condition. Research on endometriosis is underfunded, and public and medical awareness needs to be improved. But there are exciting steps in the right direction being taken at the University of Edinburgh and elsewhere, as period health becomes seen as crucial to gender equity, social flourishing, and cutting-edge research on disease.
This qualitative study aims to improve communication about endometriosis among clinicians, patients, researchers, and the public, which will hopefully improve the experience of people with endometriosis. Through interviews and fieldwork based in and around Edinburgh, it investigates how people experiencing endometriosis and people involved in its treatment understand the disorder and the challenges surrounding it, including possible environmental factors that may make it worse. We are especially recruiting patients. Results from the study will be shared not only in academic spaces focused on qualitative social science work, but with the medical community and the public. Indeed, the study aims to foster collaboration across disciplines and sectors.
Research is being led by Andrea Ford, a medical anthropologist. The project will be mentored by Martyn Pickersgill. It is funded by the Wellcome Trust grant that supports the Centre for Biomedicine, Self and Society, and sponsored by the University of Edinburgh and NHS Lothian. The East of Scotland Research Ethics Service has examined the proposal and has raised no objections from the point of view of research ethics.
We are currently recruiting participants! If you would like to take part in the study or request more information, you are warmly encouraged to contact Andrea at firstname.lastname@example.org. Your generosity in sharing your experience makes this research possible.