The Dáil has heard an 18-year-old woman suffering with suspected endometriosis has waited more than three years for surgery.
Nikita Clark is forced to use a walker and wheelchair to get around because of the “horrific amounts of pain” she suffers, and she will have to travel to Romania to get the care she requires, politicians were told.
Sinn Féin leader Mary Lou McDonald read out a letter in the Dáil from the Dublin woman as she highlighted a crisis in women’s health over the inflammatory disease and called for a specialised treatment centre in Ireland.
Ms McDonald said it affects one in 10 women in Ireland and takes nine years to get a diagnosis. Instead of getting excision surgery in Ireland, women are forced to go abroad for specialised surgery and to receive an official diagnosis, she said.
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“I know of a woman who lost a kidney to endometriosis. I know a 27-year-old who went through a radical hysterectomy because the disease in her case had eaten away at her pelvic organs and her bowel,” she said.
In her letter, Ms Clark said: “I’m 18 years old and instead of getting my driver’s licence, picking out a debs dress, studying for my Leaving Cert, going out with friends or getting a job, I spent my days sitting in bed in horrific amounts of pain.
“My days just roll in all together. I barely get any sleep because of pain. Everything I do isn’t without a high level of pain. Walking hurts. I have to use a walker and a wheelchair to get around.
“I need help getting dressed, having a shower, doing my hair, going to the toilet. It’s humiliating.”
She said: “I’m fully dependent on my Mam. I get headaches that burn my vision. I have pain peeing, stomach pain. I have bleeding constantly with breaks only of a few days.
“Now I am a young woman alive but not living,” she said.
Ms McDonald raised the case as she highlighted endometriosis as a “chronic inflammatory whole-body disease”.
She said it affects the pelvic region, the uterus, fallopian tubes, and the cervix, and it can travel to the bladder, bowels, diaphragm, and even the lungs.
She added that “the lack of understanding and awareness often sees the suffering of women and girls dismissed, [with] their pain often put down to bad periods. So instead of getting proper care they receive outdated treatments that prolong pain and trauma.”
She called on the Government to establish “a long overdue specialised centre for the treatment of endometriosis”.
She asked Taoiseach Micheál Martin “to ensure that the provision of excision surgery in Ireland is available so that women aren’t forced to seek care abroad”.
Mr Martin said Ms Clark’s case “clearly illustrates a very, very debilitating impact that endometriosis can have on women”. He said there had been progress in dealing with endometriosis and significant additional investment of €5 million had been spent and €2.1 million has been allocated for this year.
He said two super regional hubs have been established in Cork and Tallaght offering specialist endometriosis clinics and services, and 94 per cent of women were seen within six months in the Cork region.
Mr Martin said conservative estimates say 350 severe cases a year would require specialist treatment and Nikita Clark is clearly in that category.
There are also clinics in five hospitals: the Rotunda, the Coombe, the National Maternity Hospital, University of Limerick Hospital and University Hospital Galway.
The Taoiseach acknowledged that 760 women were on a specific waiting list for treatment at the end of last year “and the agenda is to get through the backlog as quickly as we possibly can”.
Discussions are under way to complete the national framework on endometriosis.
