We Cannot Wait Another Generation
Today, the UK’s National Institute for Health and Care Excellence (NICE) announced the introduction of new diagnostic technologies designed to help identify endometriosis earlier and reduce delays in diagnosis.
While other countries continue to invest in innovation, I watched the recent Taoiseach’s Questions slot in Dáil Éireann, where the Endometriosis Surgery Abroad Interim Scheme (ESAIS) was raised.
As someone who personally qualified for ESAIS because my disease was considered too complex to be treated in Ireland, I know exactly why this scheme exists.
My journey did not end there.
Following assessment by the specialist centre in the United Kingdom, I was advised that my case is too complex for that specialist to manage, leaving me discharged back to my GP for ongoing monitoring while I await access to another international specialist centre.
This is despite it being publicly reported that the same specialist is expected to support the development of Ireland’s specialist endometriosis services.
If patients with the most complex disease are still falling through the gaps, we must ask ourselves whether the system is truly meeting the needs of those it was designed to support.
Then came the Taoiseach’s Questions slot.
Watching confusion surrounding ESAIS and hearing the Taoiseach appear unfamiliar with a key initiative within Ireland’s National Endometriosis Framework - was deeply disappointing.
As a result, I have written to Deputy Jennifer Whitmore, the Taoiseach’s Office and the Minister for Health’s Office seeking clarification and sharing my concerns.
If our own Government leaders are not fully aware of the programmes introduced to support women with complex endometriosis, how can patients have confidence that women’s health is truly being prioritised?
As we approach the first anniversary of the Sinn Féin motion on endometriosis, which was rejected by Government TDs, I have one question.
How many more decades will women have to wait before we have full accountability for the failures in endometriosis care?
Patients deserve answers now - not another generation from now.
There is also one difficult but important conversation that needs to happen.
Why has Ireland’s national endometriosis charity not publicly endorsed this petition calling for an independent National Inquiry into endometriosis care?
This is not about creating division. It is about asking whether we can unite behind transparency, accountability and meaningful reform for every patient living with this disease.
If we truly want to improve outcomes, every voice matters. Patients deserve to understand where organisations, policymakers and decision-makers stand on a National Inquiry.
Over the past year, I have met with Ministers, TDs, Senators, Government officials, clinicians and patients. I have shared my own lived experience—not because it is unique, but because it reflects the reality of thousands of women across Ireland.
This campaign has never been about politics or personalities.
It has always been about ensuring that no woman spends years in pain, loses her fertility, leaves the workforce, or has to leave the country in search of specialist care because the system has failed her.
Ireland should be investing in specialist multidisciplinary endometriosis services here at home. While ESAIS has been an essential pathway for patients like me, it should remain an interim solution - not the long-term answer. Public funding should be invested in training Irish specialists and building centres of excellence so that future generations of women can receive world-class care in Ireland, rather than being forced to travel overseas for treatment.
A National Inquiry is not about looking backwards.
It is about understanding what went wrong, learning from patients’ lived experiences and ensuring future generations never endure what so many of us have.
Thank you to everyone who has signed, shared and supported this campaign.
Every signature strengthens our collective voice.
Please continue to sign and share the petition:
Because this isn’t about one patient.
It’s about every woman who has been dismissed, every family affected, and every generation that deserves better than the last. 💛