Updated guidance on the diagnosis and management of endometriosis, a condition that affects approximately 1.5 million women of reproductive age in the UK, has been published by NICE.

Recent reports from both the National Confidential Enquiry into Patient Outcome and Death (NCEPOD) and Endometriosis UK have highlighted problems with the diagnosis of endometriosis.

According to Endometriosis UK, the average length of time to diagnosis is 8-10 years. A delay in diagnosis is a significant issue, NCEPOD points out, as it can lead to prolonged suffering, ill health, and risks to fertility.

The update aims to help address these issues by:

• Recommending specialist ultrasound as an alternative to MRI for investigating suspected endometriosis in secondary care
• Recommending early transvaginal ultrasound in all people with suspected endometriosis, even if the pelvic or abdominal examination is normal
• Making firmer and clearer recommendations regarding referral
• Providing greater clarity regarding the pathway of care for women with suspected endometriosis.

Professor Jonathan Benger, chief medical officer, said: “This guideline will help to close the symptom to diagnosis gap and ensure more timely treatment. We recognise that capacity in endometriosis clinics remains an issue, and that waiting times to be seen in secondary care can sometimes be lengthy.

“However, NICE also recognises the serious problems which people with suspected endometriosis face in accessing the care they need and the consequences of delayed diagnosis and treatment. This update aims to help tackle these problems by clarifying what high quality care for women with suspected endometriosis should be.

“It is also sometimes the case that women are not always informed when endometriosis is suspected and do not have the pathway of care explained to them. This guideline should help ensure women with suspected endometriosis are informed about what to expect, and that appropriate information is provided throughout their care journey.”

Endometriosis is a chronic long-term condition that develops when cells normally found in the womb are present elsewhere in the body such as the bladder or bowel. It can have a significant physical, sexual, psychological and social impact.