Petition Update: Thirteen Years Later - A Framework on Paper Is Not Enough

Content note: This update discusses medical trauma, endometriosis, fertility loss, hysterectomy, chronic pain and experiences of inadequate or dismissed healthcare. Please read with care.

Today, 14 August 2026, Facebook showed me a post I wrote 13 years ago today.

I was lying in my local hospital in August 2013, already diagnosed with endometriosis since 2005 and yet nobody connected what was happening to me with the disease I already had.

I wrote publicly at the time:

“A huge wake up call is needed… nobody should be waiting for scans or diagnosis and being given pills, injections when they have no diagnosis yet.”

Thirteen years later, that post feels less like a Facebook memory and more like evidence of how long patients have been raising the alarm.

My café had just celebrated its first year in business and we were approaching one of our busiest weeks, the Rose of Tralee festival. Instead of preparing for it, I was in hospital being asked whether my symptoms could be caused by stress.

At the time, Sinn Féin councillor Toireasa Ferris had to contact the hospital to advocate for me to receive an MRI, indicating that otherwise she would have to contact the then Minister for Health.

Eventually, I was told that I had a fibroid in my uterus.

I was told it was “the size of a pea” and that “it would never grow.”

I asked for it to be removed.

That request was refused.

Instead, another course of Decapeptyl was proposed. I had already had two very difficult experiences with the drug and declined another course, asking instead for alternative options.

My medical records subsequently stated that I refused treatment.

I didn’t refuse treatment.

I refused one treatment and asked for another avenue of care.

During the same period, I was experiencing agonising lower-back pain. One assessment involved asking me to touch my toes before I was advised to join Pilates.

By April 2015, the fibroid I had been told would never grow had reached approximately 14cm.

What followed were three surgeries within ten months, eventually resulting in major surgery through a C-section incision and the removal of my uterus at the age of 37.

I have still received no public apology from the HSE, and liability has not been acknowledged.

And now we are in 2026

Ireland finally published its first National Framework for the Management of Endometriosis in October 2025. It establishes a defined pathway from primary care through regional specialist services to complex tertiary care. The Government said at its launch that it should raise awareness within the clinical community and that clinicians would be communicated with to improve awareness of endometriosis in clinical assessments. (HSE)

The Government has since said that 65 additional whole-time-equivalent healthcare professionals were prioritised through the HSE National Service Plan 2026 to expand and implement the framework. (Gov.ie)

These developments matter.

But this week I sat in another gynaecology appointment and found myself confronting what I considered an outdated understanding of endometriosis.

Eventually I became upset and asked the gynaecologist to document in my medical records that I believed the understanding of the disease being presented to me was outdated.

I also asked that my concerns be brought to senior management and that the department seek the resources and education necessary to ensure its clinicians are working from current endometriosis knowledge.

That should not be the patient’s job.

And this is exactly why our petition for a National Inquiry into Endometriosis Care in Ireland remains so important.

Publishing a framework cannot be the end of the story

A framework is only meaningful if the patient sitting in front of a clinician experiences the change it promises.

It must reach our GPs.

It must reach emergency departments.

It must reach local gynaecology, thoracic, urological, colon, nose, eyes, ears, neurological departments.

It must reach radiologists.

It must reach surgeons.

And clinicians must have the education, resources and referral pathways necessary to recognise when a patient’s condition exceeds the expertise available locally.

The Government itself said when launching the framework that international endometriosis experts would collaborate with Irish clinicians to build expertise and share learning. (Gov.ie)

We now need transparency around how that commitment -  and the framework as a whole - is being implemented in hospitals throughout Ireland.

Because implementation cannot simply mean that a document has been published.

This is why we keep asking for an inquiry

Our campaign has never been about claiming that nothing is changing.

Change is happening.

The framework exists. Specialist pathways are being developed. Additional staffing has been announced. Ireland has finally acknowledged at national policy level that endometriosis requires structured and specialist care. (Gov.ie)

But acknowledging a crisis and examining how patients were failed before those reforms existed are two different things.

We need to understand what happened to patients over decades of fragmented care.

We need to understand the consequences of delayed diagnosis, inadequate investigation, inappropriate treatment, failures to preserve fertility, repeated surgeries and patients having their symptoms dismissed or attributed to stress.

And now we also need accountability for implementation.

Are clinicians throughout Ireland being trained in the framework?

Are local hospitals changing their practice?

Are patients being appropriately referred into specialist and supra-regional services?

Are patients’ experiences being measured?

Are the commitments announced alongside the framework actually reaching consultation rooms?

These are legitimate questions.

Indeed, parliamentary questions have already sought publication of implementation information including referral timelines, surgical waiting times, diagnostic delays and patient experience. (HSE)

Thirteen years is long enough

In August 2013, I wrote from a hospital bed that Ireland’s healthcare system needed a wake-up call.

I had absolutely no idea what the next thirteen years of my own healthcare journey would involve.

Today I am again being monitored while arrangements are made for me to access a medical team capable of understanding the complexity of my condition.

And I am still asking questions about the standard of endometriosis knowledge available to patients locally.

That is why I will continue asking for a National Inquiry.

Not because there has been no progress.

But because progress does not erase what happened before it.

And a framework cannot protect patients if the knowledge contained within it does not reach the clinicians treating them.

Please keep signing the petition.

Please keep sharing it.

Please keep sharing our posts and talking about what is happening to endometriosis patients in Ireland.

Thirteen years ago, I asked the system to wake up.

Thirteen years later, we finally have a national framework. Now we need to make sure it becomes national practice — and we need accountability for the patients who were failed while we waited.