What Are the NICE Guidelines for Endometriosis and How Can They help?

An overview of the NICE guidelines and how they were designed to help women get diagnosed with endometriosis. 

What is NICE?

The National Institute for Health and Care Excellence (NICE) provides evidence-based guidance and advice to improve health and social care. NICE guidelines are recommendations for healthcare in England, and decisions on how they apply in Wales, Scotland and Northern Ireland are made by their own Governments. 

What do they say about endometriosis?

In September 2017, NICE issued new guidelines on endometriosis which cover management and diagnosis of the condition. It aims to raise awareness of symptoms and to provide healthcare professionals with clear advice on what action to take when patients first present in healthcare settings. It also explains the range of treatments available and recognises the varied care needs of patients. 

NICE says endometriosis costs the UK economy £8.2bn annually. The condition affects 1.5 million women, and is one of the most common gynaecological conditions in the UK, and yet the current average waiting time for diagnosis is seven to eight years. In this time, women can live with crippling pain and severely reduced quality of life. Experts say that the long wait is the same all over the western world. 

What can NICE do about delayed diagnosis?

Professor Mark Baker, director of the centre for guidelines at NICE, told The Guardian that “delayed diagnosis is a significant problem for many women with endometriosis leading them to years of unnecessary distress and suffering”. These delays can also make treatment more difficult, and NICE says there should be managed networks for endometriosis care in the community, including GPs, practise and school nurses and sexual health services, all of whom should know the symptoms to look out for. They say that women should be referred to an endometriosis specialist if they have confirmed, deep-seated disease. 

Put simply, NICE aims to speed up the diagnostic process and help healthcare professionals to detect endometriosis early by recognising the symptoms like chronic pelvic pain, severe period pain, pain during sex, urination or bowel movements – as well as infertility. The presence of one or more of these symptoms is enough to suspect the condition and NICE wants to close the symptom-to-diagnosis gap and ensure more timely treatment. A welcome approach and relief to many patients.

Why is it important that NICE address endometriosis in this way?

There is emphasis on the fact that endometriosis is a long-term condition that can have a significant physical, sexual, psychological and social affect on the lives of sufferers and can require ongoing treatment and care. The guideline informs that initial treatment options (standard pain medication, hormonal therapy, contraceptive pills) can help manage symptoms and relieve pain, but that in most cases specialised laparoscopic surgery is necessary. After all, it is the only conclusive way to diagnose the condition. It is extremely important for doctors and patients to know that during diagnosis, endometriosis should not be ruled out even when a pelvic examination or scans such as MRI or ultrasound come back clear. The endometriosis may not be apparent or could manifest itself in other areas of the body, causing added confusion and delay in diagnosis.

Thank you, NICE!

The fundamental message from NICE is that the NHS needs to listen hard to women with chronic pelvic and period pain and look out for the symptoms of endometriosis. It is not a ‘one side fits all’ condition, and the treatment and care needs of patients – physical, emotional, hormonal and surgical – can vary from case to case.

In the case of people of menstrual age presenting with pelvic pain, symptoms are regularly dismissed as ‘normal’ and ‘just part of having a period’. Younger patients have particular difficulty in convincing people they are experiencing anything other than a ‘bad period’ – even with proof of life impairment such as time of school and educational suffering. Add this to the unacceptably long average waiting time for diagnosis, and it’s no surprise to hear that this disease can have devastating effects on the mental and emotional well-being of patients in pain.

The NICE guidelines make it clear that any symptoms that routinely interfere with your day to day activities are not normal and should not be ignored or dismissed by health care professionals. Something we must remind our doctors more often.

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