Fertility pathway for women with endometriosis added to NICE guideline

Nurses will be able to discuss a dedicated and tailored fertility pathway with women diagnosed with endometriosis under new NICE guidance.

In what has been described as a ‘landmark’ move, NICE has today updated its fertility guideline to include a new section specifically on endometriosis.

It follows feedback from a public consultation carried out last year and recognises that the condition ‘requires its own tailored approach to fertility care, separate from other causes of infertility’.

The guidance means nurses and other healthcare professionals will be able to discuss a range of options with patients with endometriosis who are trying to conceive, considering individual factors such as how long they have been trying to conceive, the severity of their symptoms, their age, their ovarian reserve, and any male fertility factors.

Lucy Common, nursing adviser at NICE, said nurses often play a ‘vital role’ for patients with endometriosis and that the new guidance will allow them to provide ‘dedicated’ direction.

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‘Nurses are often the first point of contact for people concerned about their fertility, and they play a vital role in making sure patients feel heard, informed and supported at every step of what can be a deeply emotional journey,’ she said.

‘The committee’s recommendations to give nurses and other healthcare professionals a clearer, more personalised framework to have those conversations, particularly with those living with endometriosis, who have too often been left without a clear pathway to follow.

‘For the first time, nurses can point to dedicated, evidence-based guidance that truly reflects the complexity of the condition and the individual needs of the person in front of them.’

According to NICE, endometriosis occurs when tissue similar to the lining of the womb grows in other parts of the body and is one of the leading causes of fertility problems. Endometriosis is also understood to affect around 1.5 million people in the UK, it said.

NICE’s independent committee considered feedback from patients, clinicians and professional bodies between September and October last year before adding the dedicated endometriosis section.

It revealed that the illness was ‘being grouped with unexplained infertility despite it being a diagnosed condition’.

The committee concluded this was ‘inappropriate’ and that endometriosis requires a ‘distinct’ fertility pathway.

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Under the guideline, where appropriate, patients may be offered expectant management (time to try to conceive naturally) or surgical treatment to address endometriosis, in line with NICE’s existing endometriosis guidelines.

If neither approach is suitable or successful after two years, fertility treatment options including intrauterine insemination (IUI) or IVF will be discussed.

Eric Power, interim director of the Centre for Guidelines at NICE, said: ‘For too long, women with endometriosis who wanted to start a family have navigated a fertility system that did not fully recognise the distinct challenges their condition presents. This new guidance changes that.

‘We listened carefully to what patients, clinicians and patient groups told us during consultation.

‘They described how complex endometriosis is, how they felt existing labels were misleading, and that the condition needed its own pathway. The committee agreed and acted on that feedback.

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‘By creating a dedicated section for endometriosis, we are giving clinicians a clear, evidence-based framework to have better, more personalised conversations with their patients, ensuring that everyone, regardless of the cause of their fertility problems, has access to the right care at the right time.’

NICE said its recommendations on endometriosis in its fertility guideline should be read in conjunction with its guideline on endometriosis.

The guideline, which updates and replaces the NICE guidelines last published in 2013, also includes a small number of other updates confirmed following consultation, including stopping fertility clinics from offering unproven add-on treatments, and broadening access to NHS-funded fertility preservation beyond cancer patients.