New figures show there are currently 747 women on waiting lists for endometriosis surgery in Ireland, 175 of whom have been waiting for between three and six months. However, the Endometriosis Association of Ireland said those numbers are a tiny fraction of the true number of women suffering.
Amie Berns is one woman who knows this struggle all too well and says endometriosis took her twenties from her, as the disease impacted every aspect of her life.
The 31-year-old, from Co. Wicklow, said she has been told by two gynaecologists in Ireland that her condition is too complex to be treated here, and that she needs to go abroad.
She is planning to travel to Romania for excision surgery later this year, she told RTÉ News. Ms Berns said she had been struggling since the age of 14 with really bad periods
She also said it took five years to be diagnosed in a hospital in Ireland, and that her endometriosis is now categorised as stage three – when it can begin to infiltrate other organs. She is now in constant pain, and has been in and out of hospital over the last ten weeks.
Ms Berns does not believe that Ireland has the experts and specialists she needs. Explaining how the disease has impacted her whole life, she said: ‘I have been struggling to have a social life and do a lot of things in my day. I have been in such severe urinary retention that I have a catheter in – I am 31.’
She continued: ‘It took my whole twenties from me because the disease took everything from me, down to that we have had to buy an automatic car because I couldn’t use the clutch.’
She also said she has to sleep with a pregnancy pillow every night – a cruel reminder that she may never be able to have more children due to the disease.
Damien Donoghue, the Endometriosis Association of Ireland’s chair and a trained nurse, said around 300,000 women in Ireland suffer from endometriosis, an estimated 30,000 of whom require complex surgery. Many of those women reported ‘going in circles for years’, even to get the disease diagnosed, and were therefore not even getting onto any official waiting list, he told the Irish Daily Mail.
‘It’s a postcode lottery,’ he said. ‘There is one supra-regional specialist centre in Tallaght University Hospital (TUH) and one in Cork, and they are the best places to get care, but there isn’t a framework for GPs to refer cases on, so many women are never sent there.
'The [Health] Minister has conceded the numbers she has been given are nowhere near the true scale of the problem… The patient community is quite angry, but I think the minister is listening now.’
Endometriosis is a chronic inflammatory disease estimated to affect 10% (190million) of girls and women worldwide. Tissue, similar to the lining of the womb, grows in other parts of the body. In some cases, it affects organs such as the bladder and bowel, and patients often have chronic pain.
It can be difficult to diagnose; Mr Donoghue said it is often wrongly dismissed as merely being a gynaecological or women’s health issue.
Figures obtained by RTÉ News show that more than 500 women have travelled to three specialist endometriosis clinics in Romania, Spain and the UK over the last three years for treatment.
Minister for Health Jennifer Carroll MacNeill told RTÉ News this was an unacceptable position for women to be in. ‘I think women with complex, severe endometriosis have been failed by our collective lack of understanding, including my own lack of understanding,’ she said. ‘It can be incredibly painful, incredibly debilitating for women, and we have simply not done enough.’
