SINEAD MURPHY, 43, lives in a terraced house in Tallaght with her parents and her partner. She’s had jobs on and off over the years, but her ability to study and work has been hindered by the disease that has shaped her life – endometriosis.
It’s a condition that sees her bed-bound due to pain for ten days at a time, that causes her to be reliant on painkillers (on her worst days, morphine) and has seen her undergo 13 surgeries.
Now, she is in the process of saving money and applying for a loan to go and have her first surgery abroad.
Endometriosis is a chronic inflammatory condition that typically sees lesions form on a woman’s pelvic organs. For some, it causes life-altering and debilitating pain. For other women, the condition can have few symptoms, and they may only realise they have it when trying to conceive, as it can cause fertility issues.
The Journal has spoken to over ten women about their experience of endometriosis (endo) care in Ireland. While two had somewhat positive experiences, multiple women feel they have been badly let down by the health service.
The HSE is developing a new national framework for endo treatment, which aims to see the standard of care improved, and the length of time it takes to get a diagnosis, and the wait times for surgery reduced.
Gynaecologists like Dr Allison DeMaio at Tallaght University Hospital are at the forefront of collecting data on endo so we can find out how many women have and are suspected to have the condition, and learn from their outcomes. There are different stages of endometriosis, and not everyone with the condition will need to have surgery.
Excision and ablation are the primary surgical methods used to treat endometriosis. Excision involves cutting the tissue away “from its root”, while ablation “burns” the surface of the tissue away.
The latter is often opted for to preserve a woman’s fertility. Some surgeons are of the view that ablation can cause a woman’s condition to worsen long-term, as it can cause adhesions to form in the pelvic region. Both methods can provide relief and improve the woman’s quality of life, but clinical studies have shown that excision is more effective.
Ireland has a lack of excision specialists, although there are some.
Some women like Sinead, however, have already lost trust in the care being offered here.
“From the age of 16, I was collapsing every month at my period. Each month, without fail, there was an ambulance at the door,” Sinead said.
The Tallaght woman was repeatedly put on antibiotics for suspected UTIs. It was only after six emergency department visits six months in a row that St James’s Hospital detected that the issue was related to her period, and referred her to the outpatient service in the Coombe.
Initially, it was thought that Sinead was just experiencing bad period pain.
“One doctor told my mother that I was probably putting on the pain to get out of school. In reality, I was sleeping on the bathroom floor because I was vomiting from pain at night,” she said.
After her mother demanded it, Sinead had laparoscopy surgery, a procedure that involves a small telescope being inserted through a cut in a patient’s abdomen. It is the only definitive way to diagnose endo.
“The gynaecologist came to my bed after and told me I had endometriosis and I needed to go on the pill. She didn’t explain what the condition was. The pill didn’t work. When I was seventeen a gynaecologist recommended that I get pregnant, because it would help. My mother told them I was too young, so they started me on medicated menopause injections.
These injections put Sinead, who was still a teenager, into a temporary state of menopause and had a “horrific” effect on her. She experienced mood swings, dizzy spells, and depression for the first time in her life.
Shortly afterwards Sinead collapsed at her debs and went back into hospital, and had ablation surgery to remove endometriotic tissue.
After the procedure, she was told her endometriosis had gotten worse, and that she was infertile. She was 18 years old and devastated.
Sinead has had a further 12 surgeries where ablation was primarily used. These surgeries were performed by different gynaecologists, as she has been transferred between the services available in Dublin. Each surgery gave her some relief for a period of time.
At one stage she filed a complaint against Tallaght Hospital as they sent her home from the Emergency Department when she was in extreme pain – she was then rushed to hospital three days later for emergency surgery. A endometrioma (a cystic lesion) four and a half centimetres in size had ruptured on her ovary.
Last year Sinead was diagnosed with adenomyosis, which is another condition that sees the same tissue grow in the muscular wall of a woman’s uterus. She was told she’d need a hysterectomy and a bowel resection, which would have most likely left her with a colostomy bag.
She decided to go for a consultation at a specialist endometriosis centre in Romania.
“As soon as I walked in, the consultant said ‘I can see you are in pain from the way you are walking and sitting’. It was such a relief to speak to someone who knew what was going on with me,” Sinead said.
The surgeon was shocked at how many surgeries Sinead had undergone using ablation.
“It means he has more work to do due to the scar tissue and the adhesions, my organs are totally fused together. When I go back for the surgery in May, it will be a long procedure,” Sinead said.
The Dubliner has been reliant on the care available through a medical card her whole life, and she will have to take out a loan for her second trip. 75% of the cost will be reimbursed by the HSE.
Sinead is angry about the experience she has had with the health system.
I cannot believe that in the 26 years of my diagnosis, nothing has changed. It’s the same medications, the same surgical techniques, the same waiting times.
“Why should women like me have to go abroad to get treatment? Why should more girls be put through what happened to me?”
Sinead’s case is a highly complex one, and not everyone who has endo will experience the same level of pain, or will need to have so many surgeries in their lifetime.
Sarah Smith (28) is a psychotherapist from Co Meath. She had two surgeries in Ireland before making the decision to explore treatment options abroad.
Sarah wasn’t diagnosed with endo until she turned 21, but she doesn’t ever remember having a ‘normal’ period.
“I always bled through my school uniform. I’d pass out, I’d throw up from the pain – I thought that was normal. When I went to the GP at 16, they put me on the pill and told me some women have a lower pain threshold. I had never heard the word endometriosis at that stage, so how could I have known what was really going on?,” Sarah said.
She was eventually referred to the Rotunda Hospital gynaecology service, which performed scans and did a laparoscopic surgery to find and remove endometriosis.
Sarah was told her endometriosis was at stage two, which is the second-lowest of the four stages of endo, and that it had been removed via ablation after the surgery. She also had the coil put in, which can lessen pain symptoms. She had relief from symptoms for two years – but then the pain came back.
“I went back to the gynaecologists and they told me that I’d need another surgery eventually, but that I should leave as much time in between each one as I could. I was offered the medicated menopause, but I didn’t want it because of the potential side effects,” she said.
Sarah waited until 2021, but by then her pain had become debilitating once again.
“I kicked up blue murder, and my gynaecologist agreed to operate again on me. They found stage four endometriosis this time – it was all over my bowel. It was so bad they wouldn’t try to remove it, and decided to refer me on to a different service in Dublin instead. I was very upset,” she said.
The Meath woman waited from April 2021 to December 2022 for her first consultation in a second Dublin hospital.
She’d been under the impression that she was on the waiting list for another surgery during that time, but when she went for the appointment she discovered that she was being put through assessment again, and had to be newly put on the waiting list.
Sarah said the gynaecologist put her on the surgery waitlist in February 2023, on the condition that she agree to be put on a waitlist to get botox for her pelvic muscles, which scans showed to be very tight. “I wanted to get my surgery. I did not want vagina botox. I was not impressed,” Sarah said.
She filed a complaint against the second hospital, as she felt she’d been pushed back on the waitlist and would still be waiting at least another 13 months for surgery.
Sarah also felt that there was a focus on the psychological aspect of her pain that wasn’t helpful to her at that stage.
In May of last year Sarah went to Romania for a consultation, where she had an MRI, and was diagnosed with adenomyosis, which had not been detected in Ireland.
She said that one of the key differences was that the focus of the clinic abroad was on her pain symptoms, rather than preserving her fertility. She said that though she was only 25 when she had her second surgery in Ireland, and she wasn’t focused on being able to conceive, it was still a large part of the conversation around her care.
After getting a credit union loan, Sarah went back to Romania last October to have a hysteroscopy and bowel resection. It was a five hour operation, and her recovery has been challenging.
I felt relieved that the problem wasn’t in my head, and that I wasn’t imagining or exaggerating how advanced my endometriosis was.
“I have had two periods since then, and they’ve been pretty normal. Christmas gone was the best I’ve had. I was able to make plans with friends for set times. I wasn’t stuck in bed. My life has improved,” Sarah said.
She feels that she was badly let down by services in Ireland.
“They misdiagnosed me, and wasted my time. I had stage four endo and waited for another year and a half. I don’t know how extensive the surgery would have had to be if I didn’t wait for so long.
Mostly, I have anger for what other girls are going through in Ireland, because our healthcare system for women is completely fucked, to be honest.
Sophie Madden and Michelle Clifford from Cork and Tipperary are both 20-year-old undergraduate students. They have both suffered from endometriosis symptoms from a young age.
While they have faced similar obstacles to care as Sinead and Sarah, one key difference to their experience is that they have learned about the condition from online sources, and joined forums where Irish women discussed their condition at an early stage.
Sophie, a UCC student from Kinsale, uses a walking aid when she is out and about these days because the pain caused by her endometriosis makes walking difficult.
By the age of 16, she was fainting due to pain during her periods, and missing school frequently.
“I was referred by my GP to a gynaecologist in CUMH. I was told that if I got pregnant when I was 18, my symptoms would ease. I was 17 years old at the time.”
Sophie had a laparoscopy and a hysteroscopy at the hospital in January 2022. She says she was initially told no endometriosis was found, but six weeks later during a phone consultation a member of her gynaecologist’s team told her that she did in fact have endometriosis, but that it wasn’t advanced. She said she struggled to get more information from the service.
Sophie said that after her laparoscopy, her symptoms worsened. “I was fainting even when I was on over the counter painkillers. I was prescribed codeine and tramadol. Once I got my medical records through a Freedom of Information request I found out that some of my endometriosis had been removed with ablation,” Sophie said.
She eventually had a follow up consultation in December of last year, and was told that she had endometriosis, and adhesions were connecting her bowel to her abdomen wall.
Sophie was advised to have another surgery, as her pain level had increased and she was mostly unable to attend college in person.
However, she has decided to have a consultation abroad, and to have her next surgery overseas if and when she needs one.
Sophie is working part time in a deli to save up for the treatment, and is planning to take out a loan. It could cost her over €10,000 in total, and she will be reimbursed for the most part, but not for all of the costs.
By the time Michelle turned 19 in April 2021, her period pain had become so severe it was causing her to faint. She spent a week in hospital as a result of frequent collapsing.
In hospital, it was suggested to her that some of the pain she was feeling was stress-related, as she disclosed that she’d had some therapy for bullying when she was in school.
“I wasn’t stressed anymore, my life was going good, I knew something else was wrong,” she said.
Endometriosis was suggested to her as a possible diagnosis when she was younger, but she was told she was too young for a laparoscopy, she said.
“I didn’t have a transvaginal ultrasound until I was 19 either, they wouldn’t do one before that. I understand not wanting to do it because of my age, but at the same time I was clear that I’d consent to one, because I wanted to know what was wrong with me,” she said.
Michelle then saw a private gynaecologist who told her that she probably did not have endometriosis, and that she should get the coil fitted to help with her period pain, so she did.
She was admitted to Emergency Departments multiple times for pain, and had several ultrasound scans that didn’t find anything. Then in January of last year, she collapsed and blacked out in the shower due to pain.
Michelle’s gynaecologist put her on a waitlist for a laparoscopy afterwards, which she had in January of last year in the Coombe hospital. The team there found one cyst on her ovary, but said that they did not find any endometriosis.
She was still worried that something else was wrong, and after seeing an RTÉ documentary on endometriosis, she decided to fundraise for her own treatment, and spoke on local radio about her situation. €6,500 was raised, and last August she made the trip to the specialist centre in Bucharest.
The surgeon was delayed in seeing me in the clinic, and in that hour I considered walking out. I was questioning myself, wondering if this really was in my head, and a waste of time and money.
“My boyfriend told me that I’d come this far, and that I shouldn’t turn back without getting some answers,” Michelle said.
“They did an MRI, and then the radiologist showed me the scans, and said ‘look, you can see the endometriosis’. I immediately burst into tears, because it was such a relief to know that I was not crazy,” she said. Subsequently Michelle had excision surgery.
She still has period pain, but it isn’t as severe anymore.
“Looking back at the experience, I think how younger women are treated needs to change. We are unfairly dismissed, and not believed. Even if you are only 18, if you can’t go to school, that’s not right, you need help,” Michelle said.
Endometriosis is difficult to diagnose because of the variation in the way it presents, and its varying and ambiguous symptomology.
Not everyone with endometriosis has to have surgery to manage their symptoms.
The HSE is soon to publish its new guidelines for treating endometriosis within a defined clinical pathway, which will involve five regional hubs and two specialist supraregional centres.
The Endometriosis Association of Ireland is encouraging people with endo to join them, so they can appeal for change with greater numbers.
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This was originally published by Noteworthy, the investigative unit of The Journal, now known as The Journal Investigates.
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