NICE issues fertility guidance for people with endometriosis

NICE has updated fertility guidance with a new endometriosis section for people struggling to conceive.

This follows 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.

Emma Cox, chief executive of Endometriosis UK, said: “This year’s Endometriosis Action Month theme is ‘Endometriosis Doesn’t Wait’ and our new State of Endometriosis Care report shows just how urgently change is needed.

“With average diagnosis times now standing at 9 years and 4 months, and 11 years for those from ethnically diverse communities, many have already waited far too long by the time they reach fertility services.

Today’s guidance marks a step change in the fertility support that anyone with endometriosis should receive.

“For years, those with endometriosis have told us they felt invisible within the fertility system, grouped with unexplained infertility despite having a diagnosed condition.

“We welcome NICE’s decision to listen to patient voices during consultation, to create a dedicated pathway, and to remove misleading labels like ‘mild’ and ‘severe’ endometriosis.”

“Endometriosis doesn’t wait. And now, at last, neither will the guidance.”

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 those 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, which is a measure of remaining egg supply, and any male fertility factors.

The guideline sets out a treatment pathway. Where appropriate, expectant management, meaning 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), where sperm is placed directly into the womb, 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.

Eric Power, interim director of the Centre for Guidelines at NICE, said: “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.”

Public health minister Sharon Hodgson said: “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 today’s guidance is a significant step towards ending the inconsistency that has let down too many, for too long.”