A framework is not enough. Patients need answers, accountability and real change

We are calling on the Irish Government and the Department of Health to commission an independent investigation into the diagnosis, treatment and management of endometriosis in Ireland.

Despite the improvements in endometriosis care highlighted by the Department of Health and the implementation of Ireland’s National Framework for the Management of Endometriosis, far too many patients have yet to feel these improvements in their everyday lives. While progress may have been outlined on paper, the reality for many people living with endometriosis remains one of pain, delays, dismissal and desperation.

A framework is not the same as accessible, appropriate care. A promise of improvement means little if patients cannot experience that improvement in practice. Across Ireland, people living with endometriosis continue to face significant barriers to receiving the care they need. Many remain trapped on lengthy waiting lists while experiencing debilitating pain that affects their ability to work, study, maintain relationships and carry out everyday activities. Many struggle to access specialist services, appropriate investigations or timely treatment. Others are left to navigate the healthcare system themselves, fighting to be referred, believed and taken seriously.

Patients continue to report experiences of being belittled, dismissed or having their symptoms minimised by doctors who refuse to refer them for further investigation or specialist care. Too many are made to feel that they must prove the severity of their suffering before anyone will take action. No patient should have to fight this hard to have their pain investigated.

For some, the situation becomes so desperate that travelling abroad for appropriate endometriosis care feels like their only option. Patients should not have to leave Ireland to access the treatment they need. Access to appropriate care should not depend on a person’s financial circumstances, ability to travel or capacity to fight an already exhausting healthcare system.

There are also serious concerns among patients about the adequacy of some surgical treatment, including experiences of incomplete or inadequate surgeries, persistent symptoms and the need for repeated operations. Surgery is not a trivial intervention. It carries physical, emotional and financial consequences, and patients deserve appropriate assessment, suitable expertise, clear communication and continuity of care. These concerns must be independently examined, and patient outcomes must be properly investigated.

Endometriosis is a complex, chronic condition that can have profound consequences for physical health, mental wellbeing, fertility, relationships, employment and quality of life. Yet patients continue to describe healthcare journeys marked by uncertainty, prolonged suffering and the exhausting responsibility of advocating for their own care.

Why an independent investigation is needed

The implementation of a national framework cannot, by itself, demonstrate that the problems patients have experienced for years have been resolved. Ireland needs an independent, transparent investigation into what is actually happening within the healthcare system, whether the promised improvements are reaching patients and why so many continue to struggle to access appropriate care.

We are calling for an investigation that will:

Examine delays in diagnosis and treatment, including waiting lists, referral pathways and barriers to accessing specialist services.
Investigate access to specialist care, including regional inequalities and the reasons patients feel compelled to travel abroad for treatment.
Examine experiences of dismissal and inadequate referrals, including concerns about symptoms being minimised and patients being denied further investigation.
Review surgical care and patient outcomes, including concerns about incomplete treatment, persistent disease, repeated surgeries and access to appropriate surgical expertise.
Assess the implementation and effectiveness of the National Framework for the Management of Endometriosis, including whether its commitments have translated into measurable improvements in patients’ lives.
Examine staffing, funding and specialist capacity to determine whether services have the resources needed to deliver appropriate care throughout Ireland.
Give patients a meaningful voice, ensuring that people living with endometriosis, patient advocates and relevant healthcare professionals can share their experiences and evidence.
Publish transparent findings and recommendations, with clear timelines, measurable targets and accountability for delivering meaningful change.
This investigation is not about attacking individual healthcare professionals. It is about examining the wider system, identifying where and why it is failing patients, and establishing what must change to ensure safe, timely, appropriate and equitable care.

Patients deserve to know whether the commitments made by the Department of Health are being delivered in practice. They deserve transparency about waiting times, access to services, treatment outcomes and the barriers that continue to prevent them from receiving appropriate care.

Most importantly, they deserve a healthcare system that does not leave them feeling abandoned, unheard or forced to seek help beyond Ireland’s borders

We should not have to wait for another generation of patients to experience the same struggles before meaningful action is taken.

We call on the Irish Government and the Department of Health to commission an independent investigation into endometriosis care in Ireland, examine the gap between policy and patients’ lived experiences, and commit to a transparent, adequately resourced and accountable plan for change.

Endometriosis patients have waited long enough. Their experiences must be heard, their concerns must be investigated, and their care must become a national priority.

Sign this petition to demand an independent investigation into endometriosis care in Ireland. Because a framework on paper is not enough when patients are still suffering in practice.