An Irish doctor who says she was told her endometriosis was “too severe” to treat in Ireland, and had to travel abroad for lifesaving surgery, is calling on the Government to improve care for women with the disease.
In March 2025, Dr Rachel O’Connor, 31, from Co Roscommon, underwent over 10 hours of specialist endometriosis surgery in Warsaw. She says the operation involved extensive surgery to her bowel and other organs. Her surgeon later told her she should not have survived.
Endometriosis is a chronic condition in which tissue like the inner lining of the womb grows elsewhere in the body, causing inflammation and scar tissue. It can also affect fertility. The HSE estimates the condition affects up to one in seven women and girls in Ireland.
“Here is a 3.6-centimetre mass lying laterally on the colon wall,” Rachel explained, pointing to a surgical image on her laptop. “In all, I had about 14 of these cysts.”
A surgical image showing what Dr Rachel O’Connor describes as a 3.6cm mass on her colon wall
For generations of women, endometriosis has largely been misunderstood, dismissed and even normalised as acceptable period pain.
However, in recent years there has been a growing public awareness around the condition and its whole-body impact, helped, in part, by several well-known figures talking openly about suffering with the disease.
Years of pain without a diagnosis
Yet for many women, just like Rachel, it can take years to receive an official diagnosis.
As a teenager, Rachel’s periods weren’t unusual, however, she did suffer with extreme urinary pain monthly, before developing severe gastrointestinal symptoms.
“I was on the bathroom floor, I couldn’t walk, I couldn’t move and for 48 hours the pain was just so severe,” she said.
“Then it would stop and next month the same thing would happen.”
For more than a decade, Rachel repeatedly sought medical help.
“Each time I went to a doctor, I was just diagnosed with a UTI [urinary tract infection] and I was paralysed. I was just prescribed antibiotics – ‘take these, you’ll be fine’. It didn’t help. I also had chronic bowel habits; they were never normal. I was told I was sensitive to food.
Dr Rachel O’Connor sought medical help for more than a decade before receiving an endometriosis diagnosis
“I was referred to urologists, gynaecologists, ED doctors, general medicine, West Doc, university campus doctors and nobody knew what to do. Twelve years later I started developing heavy periods, so I was bleeding for 10 days a month minimum.”
At 28, Rachel was referred for an ultrasound, which revealed a series of cysts. It was then suggested, for the first time, that she might have endometriosis.
“I was just told that this is elevated endometriosis and it will go down but there’s no cure,” Rachel said.
“Given the fact that I did want to have children, it was devastating. And leaving that appointment, I still had no treatment.”
In 2023, she travelled to Warsaw at her own expense and received a diagnosis of stage-four endometriosis.
“I brought all my scans back to Ireland and got an appointment with a gynaecologist consultant. She said that my condition was too severe and that I was required to seek urgent medical care abroad.”
In an ironic twist, Rachel was being encouraged to look outside the health service she was now a part of.
Influenced by her experiences growing up, Rachel had decided to become a doctor, specialising in women’s health.
During her training, on rotation at various hospitals around the country, she had to balance work with managing her own symptoms.
“The chronic fatigue was horrendous,” Rachel said. “I started getting rectal and vaginal bleeding and this was severe.
“I was bleeding rectally constantly. So before work I would get iron and blood transfusions just before the ward round started.
“All trying to find my own healthcare and deliver healthcare as well to others.
“I just really prayed that I would find someone who would treat me.”
Turning to specialist care abroad
As Rachel’s condition deteriorated, she says she had no indication that she would be able to get the treatment she needed in Ireland in a timely manner.
She returned to Warsaw, where she says she finally met a doctor who offered her hope.
“After nine consultants, I finally met the doctor that looked me in the eye and said ‘I guarantee you, you will be healthy again’. I broke down – I finally felt hope.”
With extensive surgery planned for early 2025 to remove as much as possible of her endometriosis, Rachel was advised she should first try to retrieve eggs, if she was to have any hope of conceiving in future.
Already aware she would have to privately fund her endometriosis surgery; Rachel turned to the Government’s publicly funded fertility treatment scheme for help – only to discover it does not fund egg preservation for endometriosis sufferers.
“I didn’t even get past the first consultation,” she said.
Rachel said the operation left her feeling like she had been ‘hit by a truck’
So, like hundreds of other women annually, Rachel had to once again leave the country, scraping together enough money to fund two rounds of IVF back in Warsaw.
However, due to the severity of her endometriosis, her outcome was poor.
“My surgeon said we had to revise my goals. One goal was for me to be healthy again and the second goal was to preserve my fertility and be a mother but unfortunately, I couldn’t have both. So, I chose to save my life and to be healthy again.”
In March 2025, Rachel had her specialist endometriosis surgery in Warsaw.
The operation involved removing extensive adhesions, her appendix, two-thirds of her rectum and sigmoid colon, 20cm of her small intestine, her left fallopian tube and the ligaments supporting her uterus. Fourteen cysts were removed from her ovaries. The surgeon also shaved tissue from the outer wall of her bladder.
“I woke up feeling like I’d got hit by a truck and ran over numerous times,” she said. “It was ten and a half hours of surgery – it was only supposed to be five.
“From the diaphragm downwards, approximately 75-80% of my organs were resected or removed.
“When I asked how long did I have left, it was at that point where they said that I had multi-organ failure and multi-organ damage and gastrointestinal organ failure – the surgeon told me that I should not have survived.”
Pointing to another image of her abdomen, Rachel described what she saw after the operation.
“It was this toxic substance that was just leaking all over my abdomen,” she said. “This was the stage before septic shock that would have killed me for sure.”
Rachel says she lost 10kg. But the surgery also brought relief.
“It was confirmation I wasn’t just going a bit crazy. When I made the decision to transfer my care abroad, it was the last hope, and it saved my life at the end of the day.”
A new framework for endometriosis care
In October 2025, Government launched its first national endometriosis framework, setting out its plans for faster clinical care pathways for women with or suspected to have the disease, including a new financial support system for endometriosis patients who must go abroad for treatment.
The framework is, according to the Department of Health, a step towards improving diagnosis times and appropriate treatment.
“In 2025, established specialist services saw almost 1,200 new patients and more than 5,000 review patients, with over 1,400 endometriosis-related surgeries performed,” a statement said. “Activity increased further in the first half of 2026.
“Minister [Jennifer] Carroll MacNeill is committed to expanding specialist services and improving support and awareness.”
The HSE also told RTÉ Investigates that, as of 2025, more than €5 million had been invested in developing specialist endometriosis services.
However, funding for egg preservation for endometriosis sufferers here is still not included.
In summer 2026, more than a year after her operation, Rachel says she was reimbursed the tens of thousands of euro she had borrowed to fund treatment abroad under the Endometriosis Surgery Abroad Interim Scheme (ESAIS).
“We are moving in the right direction, but it’s just the start. This framework has to be more and more developed; it has to be improved.”
Rachel also knows that for many women just like her, surgery hundreds of kilometres from home brings other challenges, among them language barriers.
“You wake up and everyone’s speaking Polish, it is very hard.”
But above all, she’s acutely aware of just how close she came to death, because she delayed what ultimately was lifesaving surgery, in the hope the public system would treat her in Ireland.
Now symptom-free, that knowledge is driving her on. Having returned to work, she is determined to ensure better healthcare for other women with endometriosis here, pushing for change from within the very system that failed her.
“When you think you are going to die, you become so fearless,” she said.
“You want to do whatever it is to fix the system so bad and to make sure no woman ever has to go through what I have been through.
“I know I won’t give up on changing the system, not just for women but for doctors too.”
Watch Dr Rachel O’Connor’s interview with RTÉ Investigates on Prime Time tonight on RTÉ One and RTÉ Player at 9.35pm. Report produced/directed by Doireann O’Hara.