Making the invisible, visible: co-creating novel approaches to endometriosis pain communication

Endometriosis is a debilitating gynaecological condition in which tissue similar to the uterine lining is found outside the uterus. It affects one in ten women from puberty to menopause in the UK equating to around 17,000 people in Manchester city, and around 70,000 in Greater Manchester. Symptoms include painful periods, chronic pelvic pain, bowel and bladder problems, and difficulty getting pregnant. The average diagnosis takes 8 years and there are often multiple misdiagnoses during this time. Two key issues relating to pain have been identified as contributing to delayed/misdiagnosis: (1) perceived deficiencies in communication to effectively describe pain symptoms in early consultations and (2) perceptions of pain normalisation and dismissal from healthcare professionals. Our previous work has identified that people with endometriosis tend to use vivid imagery and metaphor to communication their pain, such as feelings of 'being stabbed by a thousand tiny men' and 'like barbed wire wrapped around my womb', which can be useful in making sense of the experience. However, our work has also identified that people with endometriosis do not always feel confident or have the physical resources to support them in having effective conversations about their pain. This project brings together health psychology, linguistics, and art and design to engage members of the public living with endometriosis in the co-creation of novel approaches to communicating pain, collated into a pain communication toolkit. This toolkit can be used to overcome the identified barriers to effective pain communication and to support conversations that can contribute to enhanced communication and understanding of endometriosis, along with reduced diagnosis delay.

This project will involve collaborations between Manchester Metropolitan University's Department of Psychology and School of Art, Arts for Recovery in the Community (ARC), Endometriosis UK, The Language of Endometriosis, Helen Mather (artist and educator with lived experience of endometriosis), and Manchester & Salford Pain Centre. Members of the public with endometriosis will participate in workshops hosted at the Arc Centre where they will co-create visual artefacts representative of their endometriosis pain which can be collated into a pain communication toolkit that also integrates health psychology theory and behavioural science to encourage effective communication behaviours. The draft toolkit will then be shared with the original workshop participants along with healthcare professionals from Manchester & Salford Pain Centre in further workshops at the Arc Centre to support the development of a broader understanding of how the resource can support two-way communication in a doctor-patient scenario. This will result in a co-created dissemination plan to ensure the toolkit will reach the groups that those with endometriosis feel need to use it and who can make a difference to their experiences. Feedback collated will be integrated into a final version of the pain communication toolkit.

At the conclusion of the project, original workshop participants, along with their friends and family members, will be invited to a launch event, where the final pain communication toolkit will be shared. This launch event will also mark the start of a 6-week exhibition of the physical artefacts at the Arc Centre, which any member of the public may visit to learn more about endometriosis. A dedicated webpage will document the life of the project, and a short film will document the process of developing the toolkit. The toolkit will then undergo further evaluation work and will be shared with anyone with an interest in endometriosis pain communication.