An 18-year-old who wrote a letter about her daily struggle with suspected endometriosis to Sinn Féin leader Mary Lou McDonald has said she "hasn't been able to be a teenager".
Nikita Clarke's letter was read out into the Dáil record this week with Taoiseach Micheál Martin acknowledging that further investment is needed to treat this condition, which affects up to one in ten women.
Nikita was due to sit her Leaving Certificate this year.
Instead, she spends her days in her bedroom in "excruciating" pain and uses a walking aid to move around.
She said she has no choice but to travel to Romania for treatment next month, as doctors have dismissed her pain for years, something she puts down to her age and gender.
Endometriosis is a chronic disease in which tissue similar to the lining of the uterus grows outside the uterus.
This causes inflammation and scar tissue to form in the pelvic region and sometimes in other parts of the body.
It is associated with intense, life-altering pain during periods, sexual intercourse, bowel movements and/or urination.
Read more: Dáil hears woman must travel to Romania for endometriosis surgery
Sufferers can experience pelvic pain, abdominal bloating, nausea, fatigue, and in some cases, depression, anxiety and infertility.
"It's like someone wrapping barbed wire across the bottom of my stomach."
According to the World Health Organization, roughly 10% of reproductive-age women and girls suffer with the condition.
There is no known way to prevent the disease, but symptoms can be treated with medicine and sometimes surgery.
There are four stages of endometriosis, ranging from mild to severe.
Nikita has not yet been diagnosed with the condition, but said she feels her symptoms match up.
The Health Service Executive said in a statement that "the time to diagnose endometriosis also varies by patient due to its varying and ambiguous symptoms".
Nikita said doctors believed she was too young to have the condition.
She was first hospitalised for her symptoms in September 2021.
"I don’t think I’m the youngest," said Nikita. "I think I am the youngest to speak out against it.
"It’s like someone wrapping barbed wire across the bottom of my stomach."
"I know more about medical things than being a teenager."
She said her mother Angela Healy is now acting as her carer, having to shower, dress her and even brush her hair daily.
"It is embarrassing and humiliating. I was doing it all myself and now I can’t do it anymore."
The young woman said she now needs her mother’s help to get from her bedroom to the bathroom and that her bladder has been affected.
"I can’t walk by myself. I only use the walker in the apartment. If I was to go any further, it would have to be in a wheelchair," she said.
"It’s excruciating, absolutely excruciating. I can’t continue like this."
Nikita said she made the decision to write a letter to Ms McDonald as she does not want anyone else to have to endure her suffering.
"I wanted my story to be heard," she said.
"I don’t want other people to have to go through what I have went through. I don’t want my little cousins or the next generation to have to go through this."
Nikita would like to sit her Leaving Certificate but said she now feels she has fallen far behind her peers.
She tried to sit her mock exams but was not able to sit through the pain.
"I tried to but I couldn’t do it," she said.
"It’s like trying to concentrate when someone is punching you over and over again in the stomach. You can’t get it out of your head.
"I have always dreamed of going to college and being a lawyer or a nurse or a doctor. I want to help people but I don’t think I can anymore.
"I don’t know how I would hold down a job."
Nikita said she watches her friends go to concerts and house parties at weekends, while she struggles to move from her bedroom to her sitting room.
"I know more about medical things than being a teenager," she said.
"I've gone into survivor mode.
"It's not that I don't feel the feelings, I just don't show the feelings. It's like I am switched off."
Nikita said she has "no other option" but to go abroad for treatment but wants to ensure that others do not have to take the same journey.
She and her mother say that women are getting longer relief from a surgery available in Bucharest and that the level of care there is ahead of Ireland.
The young woman now worries that her plans to have a family in the future will be affected by her condition.
"I have always wanted to have kids," said Ms Clarke. "When I was young, I would play with baby dolls. I have always said to doctors that I want to have kids."
Nikita said she would like to meet the Taoiseach face to face to discuss the problems around women’s healthcare in Ireland.
"It’s horrible, it’s horrific, it’s horrendous that in 2025 this is something that has to happen.
"This country is so far behind, that someone like me and other young women have to go through this and not be believed."
The family has been blown away by support from women with similar experiences since Ms Clarke’s letter was read in the Dáil.
"It feels like we are not alone," Nikita’s mother, Angela, said tearfully.
Nikita will attend her graduation from secondary school by using a wheelchair and has arranged with her teachers to drop down her certificate at the end.
"She won’t be able to go up," said Ms Healy.
"To me, she is still my 14-year-old child because she missed out. She hasn’t been able to live her life since then."
'It wasn't a difficult decision' - Jessica
Jesscia, 26, was also originally told she was too young to have endometriosis when her symptoms started after her first period at 13.
She was eventually diagnosed with the condition and had surgery in Ireland but has since sought treatment in Romania, as she believes more effective treatment is available there.
"I didn't want to go through surgery in Ireland because I got little to no relief from my first surgery," said Jessica.
She travelled to Bucharest for her most recent surgery in June 2024.
"It wasn’t a difficult decision," she said. "I was in pain all the time. I was a cancer nurse in a busy Dublin hospital and I couldn’t keep up with my colleagues. There was a pharmacy’s worth of medication in my bag."
'One of the lucky ones' - Brenda
Brenda Quigg, 40, also feels the standard of care she was offered in Ireland was sub-par.
She said she feels like she was "one of the lucky ones" as her symptoms only started after having her children.
"It just progressively got worse," she said. "It took me a year to see a gynecologist in Cork. I spent a year in and out to my GP, begging for more meds."
"Physically, I am doing great but mentally I am still struggling with what I went through."
She was told in October 2023 that she had adenomyosis, a condition where the lining of the womb starts growing into the muscle in the wall of the womb.
An MRI also later showed suspected endometriosis lesions.
"The only cure for that I found was a hysterectomy," she said.
"I had a conversation with my husband. We both knew we were done having kids."
However, Ms Quigg said her gynaecologist refused her this option, based on her age.
"She said I might change my mind about having kids.
"I had already done my research about how hard it is to get a hysterectomy in Ireland," she said.
The Cork woman contacted a recommended doctor in Bucharest, where she was put on a six to eight week waiting list.
In September 2024, she had a hysterectomy for adenomyosis and excision surgery for endometriosis in Romania's capital.
"I am still scarred from it," she said. "Physically, I am doing great but mentally I am still struggling with what I went through.
"To have to say goodbye to my kids for nearly three weeks, is not acceptable.
"It’s painful enough having surgery. You want to have your home comforts, you want to have your support system."
She said there is a growing number of women now seeking treatment for both conditions in Romania.
"Just this week alone, I know two people going over in Romania who have had surgery in the last two days," said Ms Quigg.
"When I was there, I met an Irish woman on the same ward as me."
'I knew I had to do something' - Emma
Emma Cotter, 38, also travelled to Bucharest for a second opinion.
She said she was "just dismissed" in Ireland and was told she did not have endometriosis after a laparoscopy.
"I knew I had to do something, I wasn't going to get help here," she said.
"I was heartbroken to have to leave my family, my country to seek help somewhere."
Ms Cotter had previously been diagnosed with adenomyosis after two MRIs and two ultrasounds in a private clinic in Ireland.
In Bucharest, her doctor also found Stage 3 endometriosis.
He recommended a hysterectomy, an excision and pudendal nerve release due to her adenomyosis and endometriosis lesions.
She had an eight-hour surgery in January and stresses the importance of having "someone that believed me".
"In Ireland, they said they didn’t see anything," she said. "I lost my cervix because it was covered in endometriosis."
The Limerick native will travel back for more surgery in the coming years but dreads having to leave her young family behind.
"I was heartbroken to have to leave my family, my country to seek help somewhere," she said.
"I was mad all over again that I had to leave.
"To have to decide to have a hysterectomy, and to decide that you are completely done having your family is a choice that nobody should have to make at 38."
Prevalence of endometriosis difficult to ascertain, says HSE
In a statement, the HSE said that endometriosis is "one of the most common gynaecological conditions in Ireland".
It acknowledged that "endometriosis is a difficult condition to diagnose and treat because of the variation of presentations, impacting the physical and mental wellbeing of patients at varying levels".
It also said the "prevalence of endometriosis is difficult to ascertain" as many women never present with the condition as they are "largely unaffected by the disease" and "many cases of this condition go undiagnosed".
It said an estimated 350 severe cases per year can be treated at the endometriosis specialist hubs in Tallaght and Cork.
These hubs are aiming to clear a backlog of cases and a new health framework for the treatment of the condition is also being drawn up.
It said that these hubs will be supported by a network of five endometriosis hub services located across the country.
The HSE said that the Irish College of GPs is working on educational material for doctors that will support them to recognise endometriosis.
