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What NICE’s 2026 fertility update means for people with endometriosis

An expert Q&A with the Clue Science Team

Endometriosis now has its own fertility pathway—but will patients feel the difference?

In 2026, the UK’s National Institute for Health and Care Excellence (NICE) introduced a major change to its fertility guidelines: endometriosis is no longer treated as “unexplained infertility” and now has its own dedicated clinical pathway. 

The change reflects growing recognition that endometriosis affects fertility in distinct ways—and should be managed accordingly. But how much will this actually improve care?

We spoke to Eve Lepage, MSN, RN, to break down what’s changed, what it means in practice, and where the challenges remain.

Key takeaways: 

  • Endometriosis now has its own place within the fertility pathways, recognizing that it requires a distinct approach rather than being grouped under “unexplained infertility”

  • Staging labels like "mild" and "severe" have been removed from fertility decision-making, as they don’t reliably predict reproductive outcomes

  • The treatment pathway is more structured, moving from expectant management (up to two years) to surgery or assisted reproductive technologies like IUI and IVF

  • Access remains a major barrier, as the impact of these changes is limited by long diagnostic delays (averaging 9+ years) and regional differences in IVF funding and availability

1. Why is the 2026 NICE update significant for endometriosis patients?

The 2026 NICE update is significant because it formally recognizes something patients and clinicians have known for a long time—that endometriosis isn’t “unexplained.”

Previously, people with endometriosis could be grouped under “unexplained infertility,” which didn’t reflect the complexity of the condition. Now, NICE has given endometriosis its own place within the fertility pathway, which signals that it requires a more tailored approach. 

This shift is important not just clinically but also in terms of validation. It acknowledges that the condition itself is a meaningful factor in fertility, rather than something incidental. 

2. What does the new structured pathway look like for patients?

The updated guidance introduces a more structured pathway, but with flexibility built in. It generally moves from expectant management (trying to conceive without medical intervention) to considering surgery, and then to assisted reproductive technologies like IUI or IVF if needed.

What’s different is that NICE emphasises individualised decision-making. Factors like age, ovarian reserve, symptoms, and how long someone has been trying to conceive are all meant to guide next steps.

Another important change is the move away from using terms like “mild” or “severe” endometriosis in fertility decisions. Those labels don’t reliably predict fertility outcomes, so the focus is shifting toward a more holistic understanding of the person’s situation.

3. How does this update improve fertility care for people with endometriosis?

In theory, it creates a more connected pathway—from diagnosis to fertility care.

NICE had already updated its endometriosis guideline in recent years to support earlier imaging and referral. Now, with the fertility update, there’s a clearer link between identifying the condition and making decisions about trying to conceive.

This should help support earlier conversations about reproductive goals and reduce the chances that people feel like they’re navigating fertility without a clear plan

4. Will these new guidelines make a difference in practice?

That’s where things get more complicated.

The pathway itself is more thoughtful and more patient-centered, but it depends on people being diagnosed early enough for those options to be meaningful. 

In reality, endometriosis is still often diagnosed late, often years after symptoms begin.

Access to specialist imaging, referrals, and surgery can also vary a lot. So while the guideline improves the framework, the real impact will depend on whether people can actually access care at the right time. 

5. Are there any concerns or limitations?

Yes, a few. One is the recommendation to consider expectant management for up to two years. That may be appropriate for some, but for others, especially those who are older or have more complex diseases, it could mean losing valuable time. 

There are also practical constraints. Surgery and fertility treatments like IVF are included as options, but access isn’t equal. Wait times, regional differences, and funding limitations can all affect what people are actually able to pursue.

So while the guideline presents choices, those choices may not always feel available in practice. 

6. What does the update ultimately mean for people with endometriosis trying to conceive?

Overall, it reflects a more nuanced understanding of endometriosis-related infertility. It’s a step forward in terms of recognising patients' experience and supporting more individualised care. But it also highlights a gap between what guidelines recommend and what healthcare systems can realistically deliver.  

For patients, that means the experience may still vary quite a bit depending on where they live and how quickly they can access care. 

7. What is the biggest remaining challenge when it comes to people with endometriosis trying to navigate fertility?

In a way, NICE has improved the map—but the journey hasn’t changed much yet. 

Delays in diagnosis, long wait times, and uneven access to care are still major barriers. And those factors can shape someone’s fertility experience just as much as the guideline itself.

So this update is an important step, but it’s not the final one. 

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