Box 2.

Tips that GPs could consider when caring for women with possible endometriosis, developed with women with lived experience of endometriosis

  1. Recognise that women may have experienced painful symptoms for months or years before they make an appointment.

  2. Listen to the whole account of the woman’s experiences, including considering patterns of symptoms across more than one system (pelvis, bowels, bladder, fatigue, and so on), and that these might be dominant. Recognise that symptoms can be constant or cyclical.

  3. Ask women to compile or use symptom accounts or diaries to help spot symptom patterns and monitor changes, including in response to interventions.

  4. Support and continuity of care from GPs helps women. Arranging follow-up appointments can demonstrate your interest in helping.

  5. Do not make assumptions about women’s concerns or priorities (including about sexuality and reproductive intentions both now and in the future); ask them.

  6. Do not assume that distress is driving pain: it can be the other way round.

  7. It is good to respond to women’s concerns if they raise endometriosis. GPs should introduce the word and possibility if women do not.

  8. Trials of treatment require clear communication to be effective. GPs need to explain their thinking and ensure there is a robust shared follow-up plan including a clear timescale for review. To not do this risks women feeling ‘fobbed off’ and not coming back.

  9. Offer information and resources about endometriosis, even if this is only a possibility, as this can help women advocate for themselves.

  10. Keep an ‘open door’ and hold an ongoing advocacy role in primary care to help women navigate their care journeys, with recognition that endometriosis can be difficult to diagnose.