The updated fertility guideline includes a brand-new section specifically for those with endometriosis who are struggling to conceive. This is a direct result of feedback received during public consultation, recognising for the first time that the condition requires its own tailored approach to fertility care, separate from other causes of infertility.
This year's Endometriosis Action Month theme is: 'Endometriosis doesn't wait', a message that resonates directly with today's guideline. While the updated guideline cannot address diagnosis delays alone, it sends a clear signal that once endometriosis is diagnosed, patients should no longer face additional barriers when trying to start a family.
The dedicated endometriosis section was added to the final guideline after NICE's independent committee carefully considered feedback from patients, patient groups, clinicians and professional bodies.
Endometriosis UK and others told NICE during consultation that endometriosis was being grouped with unexplained infertility, despite it being a diagnosed condition. The committee agreed this was inappropriate and that endometriosis requires a distinct fertility pathway.
Respondents also told NICE that terms such as "mild" and "severe" endometriosis were clinically ambiguous and did not reflect the complexity of the condition or its impact on fertility. The committee agreed and these terms have been removed from the final guideline.
Under the new recommendations, clinicians will discuss a range of options, with patients with endometriosis who are trying to conceive, taking into account individual factors including how long they have been trying to conceive, the severity of their symptoms, their age, their ovarian reserve, and any male fertility factors.
The guideline sets out a clear treatment pathway. Where appropriate, expectant management (time to try to conceive naturally), may be offered, or surgical treatment to address endometriosis, in line with NICE's existing endometriosis guideline (NG73). If neither approach is suitable or successful after 2 years, fertility treatment options including intrauterine insemination (IUI) or IVF will be discussed.
The new guidance supports the ambitions set out in the NHS 10-Year Health Plan, which commits to shifting care closer to home and empowering patients and professionals to make the best choices about treatment. Setting out a clear, personalised pathway in the guideline for endometriosis, helps ensure fertility services are better tailored to individual need, reducing variation in care and supporting equitable access across England.
"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," commented Eric Power, interim director of the Centre for Guidelines at NICE
Eric continued: "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.
"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."
Lucy Common, nursing adviser at NICE, said: "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.
"The committee’s recommendations 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."
Public Health Minister Sharon Hodgson added: "Every woman with endometriosis deserves fertility care that recognises the complexity of her condition. This landmark guidance will ensure women can access a clear, personalised pathway to fertility care that leads to clearer conversations with clinicians and fewer barriers.
"We're committed to giving every woman the support she deserves, and this guidance is a significant step towards ending the inconsistency that has let down too many, for too long."
