“Women in pain are invisible”

Local women share the reality of living with Endometriosis

By Rebekah O'Reilly

For one in ten women in Ireland, chronic, undiagnosed pain caused by endometriosis is a harsh and often hidden reality.

Endometriosis causes tissue, similar to the lining of the uterus, to grow in places where it doesn’t belong. It can lead to pelvic pain, heavy periods, and fertility issues. Treatment may involve medication, surgery, or a combination of both.

The frustration of the countless women fighting a daily battle against the condition was raised by Sinn Féin in a recent Dáil motion highlighting the ongoing lack of funding and adequate care for those suffering from the condition.

The party's local TD Sorca Clarke was the only Longford-Westmeath representative to support the motion, which called for the establishment of a 'centre of excellence' for endometriosis care. Health Minister Jennifer Carroll MacNeill responded by saying work was "underway" to expand endometriosis specialist services in the health service.

However Monksland native Leah Moloney (28) and Lecarrow native Amy Galvin (22) are just two of hundreds of women across the country dealing with the consequences of a healthcare system that, they say, is systematically failing women.

The Harsh Reality

"It started when I first got my period at the age of twelve," Leah explained.

"My periods were always extremely heavy, and the pain was so intense. It was in my lower abdomen, my thighs, my lower back, and I would feel like I was going to pass out.

"As women, we're never told what an abnormal amount of pain is. I thought this was normal. Girls are expected to just deal with the pain."

For Leah, her symptoms intensified at age 21. She often found herself doubled over in pain, unable to leave the house.

"At that point, I was given the Kyleena coil, an intrauterine system, and that really helped my symptoms. My period basically stopped, which was great for me. But then, about two years later, I started to get this persistent pelvic pain.

"It felt like a constant urinary tract infection, even though I didn't have one. It has just gotten progressively worse since then. I have to take Solpadol, which is codeine, and paracetamol, for the pain. No one should have to take codeine for their period."

Women's Health Training

Like many women advocating for themselves in a medical setting, Leah felt that there wasn't enough compassion for her condition.

"My GP is fantastic, but there's only so much she can do. I got referred to a gynaecologist and went private, which was a huge stretch financially.

"When I rang the clinic, they said they never received my referral, which caused a further delay. Eventually, I was seen by a team of clinical nurse specialists instead of the actual gynaecologist."

Leah said she made requests to have a laparoscopic procedure carried out, in order to diagnose endometriosis, but to no avail.

"The standard transvaginal scan can't detect the scarring,” she said. "That's the thing, there's a lack of adequate care because medical professionals don’t have sufficient training in women’s health."

A Vicious Cycle

The mental toll of living with chronic pain is another often-ignored consequence of endometriosis.

"It has a huge impact on my mental health," Leah said. "It affects my ability to work and my ability to travel, which in turn affects my ability to earn money to get treatments or tests for my pain. It’s a vicious cycle.

"The government doesn't provide enough support to women who are in debilitating pain. You need to work to afford the procedures, but you can't work in that pain. There needs to be more financial support."

Echoing the stories of more than 40 women who recently shared their experiences in the Dáil, Leah added that she feels her only remaining option is to seek medical treatment abroad.

"My only option would be to go abroad for laparoscopy, but I don't want to do thaat, and we shouldn't have to. I don't have the money for it, and I know that’s the case for so many women."

While the Government operates a Treatment Abroad Scheme, it functions on a reimbursement basis, effectively freezing out many candidates who require urgent care but cannot afford the upfront cost.

Leah says she knows women who have had to choose between making a down payment on a house or paying for surgery abroad. It's a stark testament to the gravity of the situation so many find themselves in.

Amy's Story

Lecarrow native Amy Galvin has been battling endometriosis for over a decade, with the severity of the condition causing her to miss out on countless hours of school and work.

"Every month I was missing school, like getting very heavy periods where I was actually physically getting sick… I couldn’t keep down any food.

"I used to walk up to my deputy principal’s office every month, and she’d know exactly just to pick up the phone and call my Mum."

For Amy, being dismissed and doubted by professionals became a routine part of seeking medical help.

"They just kept putting me on different pills, even though hormonal treatment never worked before," Amy said, adding that practitioners continuously told her she needs to give hormonal treatments 'more of a chance'.

"I got the coil in May, and after the first week I thought this is going to help me. Then I started getting terrible, terrible pains.

"I ended up getting a really bad infection from the coil and ultimately we decided to just get it out completely. I couldn't get out of bed."

Amy says she thinks her age plays a role in the dismissal of her concerns.

"I think because of my age, doctors just kept thinking I’d grow out of it."

The 22-year-old's pain is so intense that it has left her afraid to leave the house, as she never knows when it will worsen.

"I'm on seven different medications trying to manage the pain, some days it works, some days it doesn’t.

"It's had a serious effect on my mental health. I’m anxious to leave the house because what if I get a pain in town?"

Without a proper diagnosis, Amy fears that the spread of endometriosis growths throughout her body will affect her ability to start a family later in life.

"I think about it constantly. It’s one of my biggest worries, what if I can’t have children?

"A nurse told me I shouldn’t have any issues, but she doesn’t even know if I have endometriosis."

A Women's Issue

Both Leah and Amy pointed to the same cause - arguing that the majority-male Irish Government doesn't understand the issue because it doesn't affect them.

"It was really disheartening to see the motion on endometriosis voted down in the Dáil a couple of weeks ago," Amy said. "It's ridiculous. Women need more support in this country."

Leah added: "A democracy should be representative of the people it represents, and we have no female councillors in the Athlone electoral area.

"If men in power actually listened and empathised, it wouldn’t be such an issue."

The Monksland native highlighted that it takes on average nine years for a woman to get an endometriosis diagnosis in Ireland.

"One in ten women have this, and we still don’t have a single endometriosis specialist in the country. That’s unacceptable.

"We’re an afterthought. Women in pain are invisible."

Need For Change

The hidden illness affects an estimated 10% of the female population of Ireland.

"We all need to start talking about it more," Amy said. "I'm so disappointed in our Government, we need to learn how to advocate for ourselves. Enough is enough."

When asked what needs to change to improve endometriosis care in Ireland, she said: "Women should have the ability to make their own choices. If we want to go straight for surgery, we shouldn’t have to wait years in pain just because of our age."

"There needs to be political action," Leah added, noting that state-funded centres of excellence for endometriosis where women can get diagnosed and treated would make a profound difference.

"We need to treat women's pain seriously. That means training more specialists, cutting waiting lists, and giving women access to real care, not just hormone treatments and waitlists."