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Perspectives, experiences and challenges with suspected endometriosis in Primary Care

  • 1 April 2018 to 31 January 2019
  • Project No: 403
  • Funding round: FR 15

Lisa Hinton, Abigail McNiven, Helen Salisbury, Sharon Dixon

Endometriosis is a menstrual condition which affects around 1.6 million women in the UK. It is associated with painful periods, heavy menstrual bleeding, and pain during sex, and it can be a factor in infertility. Endometriosis mainly affects girls and women of reproductive age, from puberty through to menopause. There is no cure for endometriosis, but there are some treatments which can help manage symptoms. Having a diagnosis offers a label which can help women understand more about their situation, seek emotional support and manage their health.

Primary care is a crucial setting through which women seek medical support and advice for suspected endometriosis. However, there is often a long wait before endometriosis is suspected or women are referred to specialists for more advanced support. This can also mean a delay in women’s symptoms being treated or them having access to the range of treatment options currently available.

A clearer understanding about what happens in primary care when women consult with endometriosis-like symptoms will provide a platform from which to start to address these delays and improve care for women. What are the perspectives and experiences of doctors and practice nurses when they see women with possible endometriosis? What are the challenges and uncertainties they face in these consultations? What do they do, say and advise to their patients with possible endometriosis? Does their practice in primary care follow medical guidance, such as the NICE guidelines (currently in update for publication in September 2017)? Our study will use clinical scenarios in qualitative telephone interviews with health professionals in primary care to explore these questions and build a fuller picture of the challenges involved. The findings will be published and used to develop further research proposals to develop information and support resources on endometriosis.

Amount awarded: £50,206