'Left in Limbo’: Donegal women forced abroad for endometriosis care

Women in Donegal suffering from endometriosis are being “left in limbo”, with many forced to seek care abroad due to failures in the healthcare system.

March is endometriosis awareness month and an information and storytelling event took place in Ballybofey on Thursday night. 

Endometriosis affects one in 10 women and can impact the pelvic structures, ovaries, bowel, bladder, and ureters.

Sinn Féin Senator Maria McCormack is holding a series of events across the country and the gathering in the Villa Rose Hotel heard stories that were heartbreaking and shocking in terms of the treatment of sufferers.

Ballybofey-based Sinn Féin County Councillor Dakota Nic Mheanman told of her ongoing experience with the condition. 

At 18, having been sent home by a GP, she underwent ultrasound examinations which came back clear. 

“Nothing happened and I just let it go for a few years,” she said. After a traumatic pregnancy and giving birth via an emergency cesarian section, Councillor Nic Mheanman said she was seen by a gynaecologist in Letterkenny, who performed a subsequent ultrasound.

“They came back with ‘nothing here’ and ‘nothing we can do for you’ and I was discharged,” Councillor Nic Mheanman said. “That was it until I saw other peoples stories about endometriosis.

“I am still in the same condition. They keep going back to the c-section, but I keep explaining that it has been going on longer than that.”

She said she has been given a pill to take, then given another pill and essentially has been “left in limbo”.

Senator McCormack said that women are “leaving this country in their thousands to seek care they should be able to access here at home”.

“Our system continues to push out treatments that do nothing but prolong the suffering,” she said. “Tonight is not just about highlighting the failures of the past, but about building a future where women with endometriosis are no longer forced to suffer in silence. We need to shape a framework for real healthcare reform and push the Health Minister to act not in 5-10 years time, but now. 

“This story is yet another example of how this government has failed women. This is about action and about demanding the care that women deserve - and I will not stop until we get it”.

One person told of being in “unbearable pain” in 2018 and was taken to Letterkenny University Hospital with suspected appendicitis before being sent home. However, she was taken back “wailing in agony”.

She underwent surgery at 2.30am, but was discharged at 8.30am again “and they blamed my mother for overreacting.”

In 2023, she was told that a hysterectomy or a medical menopause may be her only option. 

“I am 22 and I don’t know if I can have children, but at least I want to have that chance,” the emotional woman said.

“Every day tasks are almost impossible. I can’t access the support I so desperately need."

She explained how frequent absences put her place in a course at risk. 

She was “sent home like so many times before” having presented at the emergency department of LUH again in recent days.

Another woman has had two surgeries for suspected appendicitis “and my appendix is still there”.

“I have been dismissed, told I had an STI…I thought I was mental,” she said, adding that she is now under the care of the Beacon Hospital in Dublin having previously been told by doctors in Letterkenny that her only options were early menopause or a hysterectomy.

“It took over 10 years, even with private health insurance, to get diagnosed,” she said.

The attendance heard the story of one 29-year-old woman who started having periods at the age of nine and was offered injections to induce menopause while still a teenager. 

“She went on to have children, but that could have been taken away from her,” the crowd heard. 

Another woman in the audience told how she is spending €200 each month on medication to manage the condition.

“We are getting shafted,” another voiced. “There is no support, financial or physical.”

Jess Ní Mhaoláin from Cork told of her painful journey which began with pelvic pain in 2007 when she was 15.

“Probably your appendix,” a doctor told her and sent her home.

Between 2018 and 2019, Ms Ní Mhaoláin had four surgeries in 13 months, including a life-saving operation.

“I am still paying back the loan for it,” she said. Ms Ní Mhaoláin underwent a hysterectomy at the age of 27 in London “in a place an hour’s flight away from Cork. That was because nobody listened to me. I was deciding between my life and my fertility before I was 28.”

She is on hormone replacement therapy for life now and told how she feels that “if someone had treated me on time, I wouldn’t have spent a year trying to recover from the fact that I would never be a mother or make my parents grandparents.”

“We know that Donegal is seen as the forgotten county and some think that we moan too often here, but imagine living in the forgotten county with a forgotten disease,” said Endometriosis advocate and Letterkenny resident Kathleen King.

“With endometriosis, we know that one of the biggest problems is delayed diagnosis. This is begging and pleading to be listened to and to be heard.

“You are not believed or treated as a reliable witness to your own suffering. That is degrading. That is suffering.”

Senator Maria McCormack addresses the event. Photo: Joe Boland (North West Newspix)

A medical scientist, Ms King said it was high time that young women were not referred to mental health services instead of a gynaecologist.

She said that women who did not have the financial means to get out of the country for treatment would be “in a really bad place”.

Ms King said: “We don’t need endometriosis to be the next women’s healthcare scandal. This could be on a par with any women’s healthcare scandal.

“All we are doing is sending people around a revolving door multiple times.”

Ms King is calling for mandatory education for healthcare professionals. She has rolled out a pilot scheme in schools, which she does in her own free time.

“A national survey would cost very little…It is not just a women’s disease, but it is a society disease. We need to fight for change and we need all of the voices and all of the people to work together.”

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Sinn Féin TD Pearse Doherty told the meeting that a collective voice could make change.

“There is nothing more powerful than to hear real life experiences,” Deputy Doherty said. “People will know about endometriosis but will not know about the real experiences about what it means and missing holidays, weddings and the cost of not being listened to or believed.

“It is our job to make sure that this doesn’t go on the back boiler. We will use the opportunity that we have to push this forward.”