Inside Ireland’s Endometriosis Care Crisis

According to figures obtained by District, at the start of this year, 965 patients were on the waiting list for specialist endometriosis services through the HSE. Of those, 135 had already been waiting for more than a year.

Ireland is now investing millions in endometriosis care. So why are women here still living with debilitating pain, and how is it shaping their lives physically, emotionally and financially?

For women in Ireland, period pain is often treated as a rite of passage, something to grit your teeth through, rather than something to question.

Very often, many symptoms are waved away, which leaves women wondering whether the pain they are experiencing is simply a part of life they have to accept. What’s more, symptoms such as pain during sex remain a taboo topic, making them even harder to raise.

This results in many Irish women learning how to live with the pain of endometriosis rather than have it properly treated, and managing the symptoms alone deepens the isolation that already comes with the condition, adding to the mental toll of the pain itself.

Clare, 49, from Dublin, began experiencing symptoms at 12 but was not diagnosed until more than three decades later. By then, she had become accustomed to functioning through severe pain alone, taking between 12 and 14 painkillers a day.

Despite her pain, she says she never took a day off work. Instead, there were toilet cubicles she sobbed in, hours spent frozen in pain at her desk, and nights she crawled around her bedroom at 2am, woken from dreams that she had been stabbed in the pelvis — only to realise it was, in her words, “just the endometriosis”. 

When asked why she never took work off, Clare explained it simply wasn’t an option. “I remember thinking, oh God, okay, this is just something I have to live with, expect to have, and grin and bear it.” 

“I remember thinking, oh God, okay, this is just something I have to live with, expect to have, and grin and bear it.” 

This begs the question, why do women with endometriosis feel they have no choice but to live through their pain, and what happens when they speak up?

Often, when Irish women push past the normalisation of their pain and seek answers, they can still find themselves fighting to be believed. Being repeatedly dismissed can leave women feeling even more isolated and unheard. The consequences of delayed diagnosis are now reaching the courts. Four legal claims against the State were active last month in cases involving alleged delays in diagnosing endometriosis, with damages potentially reaching €250,000.

For Tree, 25, from Dublin, symptoms began at 13, but diagnosis didn’t come for another 12 years. As her condition worsened at school, she gave up sport and struggled with her studies. “I would come home from school and lie on my bed not able to move or speak or tolerate any light or noise for hours… I really struggled to eat because of the pain.”

“I would come home from school and lie on my bed not able to move or speak or tolerate any light or noise for hours… I really struggled to eat because of the pain.”

One doctor was so convinced she didn’t have endometriosis that, she recalls, “he said he had a sixth sense for endo.” She spent the next two years on nerve blocks and pelvic Botox for a condition that remained undiagnosed.

By the time Tree was referred for a laparoscopy to diagnose the endometriosis, she was apprehensive. “I felt completely traumatised by the medical care I have received,” she says. “Eventually I just agreed cause I didn’t see another option.“

“I felt completely traumatised by the medical care I have received,” she says. “Eventually I just agreed cause I didn’t see another option.“

This physical pain can also impact careers. Speaking to District, Dearbhail Ormond, Board Director of the Endometriosis Association of Ireland, says the association regularly hears from patients who reduce their working hours, leave employment or miss education because of their symptoms. 

“Some people spend their savings on private consultations, medication, physiotherapy, fertility treatment, travel or surgery because they cannot wait any longer,” Ormond says.

“Some people spend their savings on private consultations, medication, physiotherapy, fertility treatment, travel or surgery because they cannot wait any longer,”

Where a patient lives can shape that experience too. In Galway, which currently has no designated specialist endometriosis centre, patients can be referred to Dublin only to be told they fall outside its catchment area and sent back.

“Endometriosis care in Ireland remains a postcode lottery,” Ormond tells District.

“Endometriosis care in Ireland remains a postcode lottery,”

Mary, 30, from Portlaoise, is another woman whose life has been severely disrupted. 

During her worst flare-ups, she says, “my body completely gives up. The burning sensation takes over my whole body, my lungs in severe pain. I have to bend myself over the bed to catch a breath.“

 She relies on a walking stick most mornings and, on some days, can’t get out of bed unaided. “My life has become so on standstill that my college, my Master’s, my work, my personal life has went completely to nothing”.

Like many women in Ireland, endometriosis has affected Mary financially too. Still awaiting treatment, Mary looked into the HSE’s Endometriosis Surgery Abroad Interim Scheme. The scheme is an initiative that funds endometriosis surgery overseas at approved centres for patients who are referred by an Irish consultant and stuck on a waiting list. It covers surgery, appointments and some travel costs. 

However, she says the process was too slow for what she needed, even with her gynaecologist pushing for her case to be treated as an emergency. She has since launched a GoFundMe campaign to raise €4,000 to travel to Athens for treatment. 

District reached out to the HSE to understand how exactly they are tackling waiting times for endometriosis care, asking how many patients are currently waiting, what’s causing diagnostic delays, and what’s being done to expand services and meet rising demand. 

The HSE explained it cannot pinpoint exactly how many women nationally are awaiting endometriosis surgery, as waiting lists are recorded by specialty rather than condition. However, they did confirm that 965 patients were on its specialist endometriosis waiting list at the start of the year. 135 of them had been there for over a year. 

“The HSE acknowledges that, historically, conditions such as endometriosis have involved delayed diagnosis and fragmented care, which may have contributed to some women not receiving timely access to care.”

District was told that diagnosis is inherently difficult given how widely symptoms vary and when they emerge:

 “Endometriosis is a difficult condition to diagnose and treat because of the variation of presentations… Diagnosing endometriosis is made even more challenging because the condition does not only arise in the pelvic area but also in other parts of the body… However, others who have endometriosis may experience few or no symptoms. The time to diagnose endometriosis varies by patient due to its varying and ambiguous symptomology.”

“It should also be noted that a significant proportion of diagnosis of endometriosis can arise as a woman is progressing through her fertility pathway… rather than a suspected endometriosis referral.”

On tackling the issue, the HSE pointed to a national push: a Clinical Guideline published in June 2025, followed by Ireland’s first National Framework for Endometriosis Management that October, establishing specialist centres two supra-regional units for severe cases at Tallaght and Cork University Maternity Hospital. It also pointed to five regional centres for moderate cases, three already running (Coombe, Rotunda, Limerick) Referrals have surged, in some centres doubling year-on-year, but the HSE insisted waiting times remain broadly stable thanks to expanded capacity. 

The HSE says care will be delivered through multidisciplinary teams — consultants, nurse specialists, physiotherapy, dietetics and psychology — offering “holistic, whole-person care” that goes beyond diagnosis and surgery. GPs play a key early role, with referral to specialist services possible on either a confirmed diagnosis or strong clinical suspicion of endometriosis. 

The HSE also cited over €5 million invested by end of 2025, a further €11 million securing 65.5 new staff posts, a surgical drive adding 142 extra operations to push total surgeries past 1,400 for the year, and its aforementioned Surgery Abroad Interim Scheme, launched in October 2025 to fund overseas treatment while domestic services scale up. It described the framework’s launch as the beginning of improved care rather than the endpoint. 

It is investing in education, running a National Menstrual Health Awareness Campaign that covers conditions like endometriosis, alongside MISE (Menstrual Information Specialising in Endometriosis),  a nationwide programme sending education officers into schools, sports clubs and workplaces to improve menstrual health literacy. Work is being done. But for the women still waiting, that does not mean the day-to-day suffering stops.

Endometriosis continues to touch every aspect of these women’s lives. 

This means working through the pain, crying in the office bathroom, missing school before exams, feeling isolated, raising the money themselves, and still fighting to be believed while the system slowly catches up around them.

Without real investment, workplaces that recognise and accommodate the condition, and a healthcare system that listens to and believes women, those with endometriosis will continue to work through the pain in silence simply to survive.

These people deserve more than survival. They deserve empathy, shorter waits, appropriate care and a system that believes them.