RTÉ endometriosis survey reports 14.5-year average wait for diagnosis in Ireland

RTÉ reported on 7 October 2026 that women responding to its endometriosis survey in Ireland had waited an average of 14.5 years for an official diagnosis. Almost 1,800 women took part, and 88% reported waiting at least five years. The findings put patients’ accounts of delayed care alongside a national framework introduced the previous year, though the survey cannot establish how common such waits are across Ireland.

What RTÉ’s endometriosis survey found

RTÉ Investigates conducted the survey earlier in 2026 with Frendo, a digital health platform, as part of its Fertility Uncovered reporting. It was open to people with endometriosis; more than 1,400 respondents said they had received a diagnosis. The 14.5-year figure is the average wait respondents reported for official confirmation, not a measured national waiting time. The voluntary recruitment also means the results should not be read as representative of everyone with the condition.

Many respondents described repeated attempts to obtain an answer. Of 1,608 who answered a question about consultations, almost nine in ten said they had seen at least three healthcare professionals about their symptoms. Nearly 17% said they had seen more than ten doctors before diagnosis. Among respondents who had been diagnosed, 78% said they had initially received a different diagnosis.

More than half of the 995 respondents who reported a wrong diagnosis said they had been told their symptoms were normal period pain. RTÉ also reported that 373 respondents were still undiagnosed; 188 of them said they had already waited at least ten years. Those figures describe the people who answered the survey, rather than all people seeking endometriosis care in Ireland.

How respondents described access to care

Respondents also described effects beyond the diagnostic process. RTÉ said 85% reported that endometriosis affected their ability to work, 83% said it affected their education and 88% said it affected their mental health. Nearly 60% of diagnosed respondents said the condition affected fertility or family planning; 32% of that group reported difficulty conceiving. The survey records those experiences but does not establish that a particular length of diagnostic delay caused them.

Frendo founder Dearbhail Ormond called the findings a systemic failure of government, healthcare and a medical culture that had conditioned women to accept pain. That is her assessment of the survey. The Department of Health, in figures given to RTÉ, said specialist endometriosis services saw almost 1,200 new patients and more than 5,000 review patients in 2025, alongside over 1,400 related surgeries. It said activity increased further in the first half of 2026; the reported figures do not show regional waits or patient outcomes.

What earlier Irish research and the care framework show

An earlier study by Lightbourne, Foley, Dempsey and Cronin, published in Qualitative Health Research in 2024, examined interviews with 20 women about Irish healthcare services. Participants reported diagnosis times ranging from two to 32 years, with a study average of six to seven years. The researchers identified themes including the normalisation of severe pain, delayed diagnosis, inadequate services and gaps in education and awareness.

Most of that study’s participants had experience of both public and private services, and most chose private care at consultation level. The researchers recruited participants purposively from members of the Endometriosis Association of Ireland and cautioned that they did not represent all service users. Its interview findings offer context for the accounts in RTÉ’s survey, but the different samples and methods do not support a before-and-after comparison.

Ireland’s Department of Health announced its first National Framework for the Management of Endometriosis on 18 October 2025. Developed by the HSE’s National Women and Infants Health Programme with patient advocates involved, it sets out a defined clinical care pathway. A central principle is presumed diagnosis: clinicians should treat a woman presenting with symptoms on the presumption that she has endometriosis.

The HSE told RTÉ it was committed to regional access to specialist care where clinically appropriate, with referral to supra-regional services for severe and complex cases. The Department also described an interim surgery-abroad scheme, introduced in October 2025, for access to recognised overseas specialist centres when timely treatment may be unavailable in Ireland. The available survey and service figures do not establish whether the framework has reduced national diagnostic delays since its introduction.