Ireland’s Developing Approach to Endometriosis

Endometriosis is not a minor gynaecological issue. It is a systemic, inflammatory disease that wreaks havoc on the lives of tens of thousands of Irish women. Despite this Ireland’s response to date has been nothing short of ambivalent and lack lustre at best.

This is a condition that sees tissue akin to the uterine lining grow where it shouldn’t including on ovaries, bowels, bladders, even lungs. It causes crippling pain, scarring, and, in severe cases, irreversible organ damage. It’s a disease that demands urgent, specialised care, yet there is a real sense that only recently has Ireland’s Health Service Executive (HSE) approached the issue with the gravity it warrants.

As noted above, endometriosis affects at least one in ten women of reproductive age (potentially 15% when you account for undiagnosed cases). That’s tens of thousands of Irish women, from teenagers to those in their30’s and 40’s, battling chronic pain, infertility, and exhaustion.

The symptoms are brutal. Pelvic pain that can leave a woman doubled over, periods so heavy and agonising they disrupt work and relationships, and a fatigue that effectively makes it impossible to continue working.

Indeed, the impact on the economy and productivity can be stark. One large scale study conducted in 2017, The Effect of Endometriosis Symptoms on Absenteeism and Presenteeism in the Workplace and at Home, estimated annual costs associated with  absenteeism and presenteeism (showing up to work while experiencing moderate to severe pain), totalling $45.4 billion annually in the U.S.

Staggeringly, there is an average diagnostic delay of nine years in Ireland. Nine years. This means that many young women, barely out of post primary school, are left to endure almost decade of torment before accessing appropriate levels of care.

What is deeply distressing about this is that by then, the disease has often progressed, leaving adhesions, organ dysfunction, and diminished fertility in its wake. There is a strong case to suggest that this isn’t just medical negligence; it’s a betrayal of half the population.

The numbers alone should make that clear. A 2016 study in Human Reproduction Update lays bare the complexity of endometriosis, noting its varied presentations and the need for advanced imaging and specialist expertise to detect deep infiltrating lesions. Yet Ireland’s HSE has, until recently, not treated with any demonstrable level of urgency.

The experience of many women is that they are bounced between GPs and general gynaecologists, many of whom lack the training or tools to diagnose or treat this beast of a disease. The lucky ones might get a referral to a specialist, but even then, they’re often met with outdated protocols.

The socioeconomic toll is also staggering. Women with endometriosis lose workdays, careers, and earning potential, trapped in a cycle of medical appointments and debilitating pain. The cost of seeking treatment abroad can run into thousands of euros.

The HSE’s recent fanfare about supra-regional endometriosis clinics, like the one opened in Cork’s Lee Clinic by Minister for Health Jennifer Carroll MacNeill, is meant to signal progress. The government has thrown €5 million at staffing these services since 2021, with €2.175 million this year alone and €1.7 million specifically for Cork since 2022. Sounds impressive but the reality is that it barely scratches the surface. It is also becoming clear, if the political opposition are to be believed, that these clinics are woefully underprepared for the scale of the crisis. Critics, patients and advocates alike have all described them as unfit for purpose due to the fact that they lack the trained specialists needed for complex cases.

The Cork centre, operated by Cork University Maternity Hospital (CUMH), is a step in the right direction, but so much more needs to be achieved.

Dr Mairead O’Riordan, a consultant at CUMH, calls the centre a “significant milestone.” Professor John R. Higgins, Clinical Director at Ireland South Women and Infants Directorate, describes it as a “world-class” service. Minister Carroll MacNeill claims it’s a “new model of care” that will deliver “timely, equitable access.”. The concern is however that these are the kind of formulaic promises we’ve heard before.

The reality is that excision surgery, which is the gold standard for managing endometriosis, backed by global expert consensus is barely available in Ireland. This surgery, which involves meticulously removing endometrial lesions with clear margins, can reduce pain, preserve fertility, and restore quality of life. But it requires surgeons with rare expertise, operating theatres, and specialised tools. These are all resources the HSE has failed to provide to date in sufficient measure. Instead, women are offered half-measures like hormonal treatments or painkillers, which global experts have repeatedly debunked as inadequate for severe cases.

The HSE’s much-vaunted National Endometriosis Framework, developed with the National Women and Infants Health Programme (NWIHP), was supposed to change this.

It promised a defined clinical care pathway, with supra-regional clinics in Cork and Tallaght supported by regional hubs. But where is it? Promised for 2024, it’s still nowhere to be seen, leaving patients and advocates in limbo. The framework’s absence is a symptom of a deeper malaise: a health system that prioritises optics over outcomes. Women continue to be told their pain is “psychosomatic” or “just part of being a woman,” eroding trust and leaving them isolated. For many, the nine-year diagnostic delay means spending their formative years battling a disease that could have been managed with early intervention. The consequences including adhesions, organ dysfunction, and infertility are not just medical; they are psychologically catastrophic.

While Minister Carroll MacNeill speaks of “bridging the gap,” the gap remains a chasm. It is virtual certainty that the HSE’s clinics will be unable to handle the volume or complexity of cases.

Women with deep infiltrating endometriosis need more than a well-meaning multidisciplinary team; they need surgeons trained in advanced excision techniques, radiologists skilled in spotting lesions on MRI or ultrasound, and pain specialists who understand the disease’s systemic nature.

Ireland doesn’t have enough of these experts, and the HSE’s failure to invest in training or incentivise specialists is a glaring oversight. Instead, as noted above, women are forced to scrape together thousands to seek care abroad, often in countries like Romania or the UK, where excision surgery is more accessible.

How Ireland approaches endometriosis needs to change. The need for widespread access to specialised imaging protocols such as MRI and ultrasound performed by trained experts to map the disease accurately is obvious.

GPs, who are already under enormous strain to an exponential growth in demand for their services, shouldn’t be left to play diagnostic roulette. This means that a fast-track referral system to specialists, whether in Ireland or abroad, is non-negotiable. Second, and as campaigners have long argued, Ireland must establish a centre of excellence for endometriosis excision surgery, staffed by gynaecologists, radiologists, colorectal surgeons, and pain specialists working in concert.

To achieve this, collaboration with international experts is critical to train Irish surgeons, thereby reducing reliance on foreign systems. Despite growing public awareness, there remains a fundamental disconnect between the political rhetoric and the lived experience of patients. Women are still being misdiagnosed with IBS, anxiety, or dismissed entirely by practitioners unfamiliar with the complexity of the disease. Pain is normalised, fertility concerns are minimised, and the burden of self-advocacy is placed squarely on those already physically and emotionally drained. Until the diagnostic process is standardised, practitioner training is mandatory, and system-wide accountability is enforced, no framework—no matter how well-drafted—will deliver the transformation that Ireland’s women have been repeatedly promised and routinely denied.

Finally, there remains a clear need to eradicate what remains of the stigma around menstrual health. This is a moral and medical imperative.