Protecting Fertility in Endometriosis
A national campaign to reduce delay, strengthen fertility pathways and protect reproductive choice.
Endometriosis affects at least 1 in 10 women and those assigned female at birth in the UK. It is a chronic, inflammatory condition associated with infertility, complex surgery and, in some cases, increased pregnancy risk. Despite this, diagnosis still takes an average of 7–9 years.
Why this matters.
• Diagnostic delay remains 7–9 years
• Specialist referral may take an additional 1–3 years
• 30–50% of those affected may experience difficulty conceiving
• Increased risks include ectopic pregnancy and placental complications
• Fertility counselling is often delayed or absent
Our National Survey
In our survey of over 1,100 individuals living with endometriosis:
• 70% expressed concern about their future fertility
• Only 48% were aware of fertility implications at diagnosis
• Just 17% were informed by a clinician about infertility risk
• Over 90% reported anxiety or low mood linked to their condition
These findings informed our ongoing policy engagement and campaign work.
Over recent years, The Endometriosis Foundation has:
• Written to all Integrated Care Boards
• Presented findings to the Endometriosis All-Party Parliamentary Group
• Engaged clinicians and policymakers to strengthen fertility pathways
Our Call for National Action
The open letter calls for defined national action to protect reproductive futures for those affected by endometriosis.
The key recommendations include:
• Earlier diagnosis and reduced referral delays
• Structured fertility counselling at diagnosis
• Equitable access to fertility preservation
• Clearer pathways between endometriosis and fertility services
• Improved data collection and research through a national registry
• Appropriate monitoring during pregnancy for those at higher risk
• Expansion of specialist surgical training and regional centres
Signatures will be submitted alongside the letter to the Department of Health and Social Care.