A young woman has said she has spent more than €15,000 on treatment for endometriosis due to gaps in services in Ireland for the gynaecological condition.
Sarah Jane Allen (31), from Co Laois, was diagnosed with the condition in 2018 after years of suffering “sharp stabbing pains, crippling nausea and mid-cycle bleeding”.
Ms Allen was diagnosed at the age of 25 following a laparoscopy and has been managing her condition via treatment at the Priory Hospital in Birmingham, in person and online consultations.
“Unfortunately in Ireland, the level of care is not up to the gold standard of what it should be,” she said.
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“After the diagnosis the gynaecologist here said there was not much more he could do for me. I spent years just to get the diagnosis. I was in an out of A&E, hospital appointments with severe pelvic and abdominal pain and every time I was met with some sort of negative attitude or gaslighting, being like ‘it’s just period pains, it’s part of being a woman or it’s all in your head, it’s nothing serious’.
“My parents were so supportive of me. They kept believing me, bringing me in and fighting for me. I remember my Mam would sit there and say ‘the girl hasn’t eaten in a week, she can’t keep down food because the pain is so bad, it’s making her vomit. There’s something wrong’.”
Endometriosis, which can cause severe pain, involves tissue similar to the lining of the uterus growing outside the uterus. It can affect women of any age, although it is less likely in women after menopause and girls in the early years after their first period, said the HSE.
It is one of the most common gynaecological conditions and is estimated to affect approximately one in 10 women worldwide. The HSE said it is a difficult condition to diagnose and treat because of the variation of presentations.
Ms Allen has undergone a number of laparoscopic procedures abroad, which involves the endometriosis tissue being removed or destroyed as well as excision surgeries, which also removes such tissue.
“I now pay for MRI scans privately and send them on to my specialist in Birmingham and do most of the calls with him online,” she said.
“My appointments are every three months so it wouldn’t be feasible to fly over all the time. It would be great to have somewhere in Ireland to go to those appointments but unfortunately that’s not the case.
“My specialist has said it looks like I will need constant monitoring for the rest of my life due to the extent of my condition and how bad my kidneys and bowel are.
“The amount of money I’ve spent on trying to actually get adequate care is unbelievable. My partner and I are trying to buy a house at the moment but we’ve been trying for three years because of the amount of money that I have to put towards my health which is obviously important.”
The HSE said work is ongoing to improve services for women with endometriosis. It has established two supra-regional complex endometriosis services in Tallaght University Hospital (TUH) and Cork University Maternity Hospital (CUMH) to offer “very specialised care to severe and complex cases”. These are supported by an existing network of five endometriosis hub services located across the country.
Further personnel are to be recruited into these services this year, the HSE said.
Sinn Féin is due to bring forward a motion in the Dáil calling for improved services for endometriosis diagnosis and treatment. The party has been holding public meetings on the issue across the country over recent weeks.
Sinn Féin senator Maria McCormack said the meetings have been “packed” with hundreds of women.
“So many women are leaving the country [for treatment] where they’re able to do that and so many others are being left behind, just going from different clinic to different clinic, attending these super regional hubs and they’re not being able to be cared for there,” she said.
