Patient and public involvement and engagement

This project has been developed with patient and public involvement (PPI) guidance from teenagers and women with lived experience of dysmenorrhoea, including those with and without a diagnosis of endometriosis. Understanding how teenagers with menstrual difficulties can best be supported in primary care emerged as an important research and service need from our previous qualitative research with GPs which included reporting PPI feedback on this work from women with lived experience of endometriosis and menstrual pain.³² Questions included when to consider endometriosis, when to refer for investigations and whether symptom suppression with hormonal contraception represented adequate care.

The PPI advisers for this study include adolescents and young adults with lived experience of menstrual pain and adults with experience of pain in adolescence. They helped identify the questions which this study seeks to address, including the focus on presentation with symptoms, the interface between symptoms and possible diagnosis of endometriosis, knowing more about the possible long-term outcomes of adolescent dysmenorrhoea and whether treatment with hormonal contraception helps (or not).

They valued the approach of both moving prospectively from symptoms to diagnosis, alongside looking retrospectively from diagnosis to symptoms. They were interested in exploring the demographic stratification in project A, to consider whether there are any patterns that might suggest unmet needs.

Throughout this study, we will regularly meet with our PPI advisers, and seek their guidance and insights in helping us make sense of our findings, whether they suggest emerging questions, and consider how we can best share and use our results to improve knowledge and care.