‘Incompetent’ services for debilitating disease

Nine-year wait for endometriosis diagnosis drives women abroad for help

WOMEN are travelling as far as Romania – and forking out thousands of euro – to be treated for a ‘debilitating’ condition which they say is met with ‘incompetent’ services at home.

A clinic abroad told the Irish Daily Mail that Irishwomen are coming to it for services, saying they are struggling to receive a diagnosis at home, as well as appropriate treatment for the life-changing condition.

Endometriosis is a condition which affects up to one in ten women, where tissue, similar to the lining of the womb, starts to grow in other places – for example, the ovaries, the lining of the stomach and fallopian tubes.

It causes severe pain – to the level where those suffering with it can pass out or vomit – as well as painful sex, and depression due to the impact of the condition.

The barrier to diagnosis and treatment is being compounded by spiralling gynaecology waiting lists, with more than 3,000 women waiting more than 18 months for an appointment.

‘The pain is ruining their lives’

Raluca Susanu, spokesperson for the Bucharest Endometriosis Centre in Romania, told the Mail that the clinic sees up to three patients from Ireland every month, and that it is clear the pain these women are living with is ‘ruining their lives’.

‘It’s not for us to say that they did not receive proper care in their home country, but all the stories of the patients who write to us asking for help are almost the same: they are not able to receive a diagnosis, either they have been through multiple surgeries without any results, they are in tremendous pain that is ruining their lives,’ she said.

The condition is diagnosed by a laparoscopy, a form of keyhole surgery. The most effective treatment is the excision of affected tissue through surgery, but most patients in Ireland report only being offered ablation surgery, which is less effective.

The chair of the Endometriosis Association of Ireland, Clodagh Lynam, said part of the problem is a lack of specialists in the area in this country. ‘Symptoms can be managed with hormone treatment but the best treatment for endometriosis is surgical treatment, and it requires a lot of skill and experience, a lot of training, and there just aren’t enough in Ireland. That’s the problem,’ she said. As it takes an average of nine years to be diagnosed with the condition in Ireland, Ms Lynam said it is also critical that more training is provided to GPs in order to speed up diagnosis.

‘There’s a delay in diagnosis because they get sent down too many roads, and their symptoms are dismissed and told: “They’re normal, it’s normal to have painful periods, it’s normal to have a fever with your period,”’ she said.

Gynaecology wait times, which are on an upward trend, are also forcing women abroad. As of March of this year, 30,253 women were waiting for a gynaecology outpatient appointment, according to the National Treatment Purchase Fund. This is compared to 21,423 in March 2015.

A total of 3,296 women have been waiting over 18 months, while 2,530 have been waiting 12-18 months. Not only does this condition and slow diagnosis process have a physical impact on women, it also takes a major toll on their personal life.

‘Physically, they’re going through all of this and to be told that there is nothing wrong with you, it is a kind of gaslighting. It’s devastating,’ Ms Lynam explained. ‘I know someone whose marriage broke up because of it, because her husband said: “Well, the doctor said there’s nothing wrong with you so you’re obviously just making it up.” It’s tough for your friends and family to go with you if you haven’t got a diagnosis, and that takes a serious toll on relationships and on your mental health.’ In Budget 2022, the Government allocated €1.39million to expand the endometriosis centre at Tallaght University Hospital. The funding will also go towards setting up a new service for endometriosis cases at Cork University Maternity Hospital, which will be open by the end of the year – a promise also outlined by Health Minister Stephen Donnelly at the launch of the Women’s Health Action Plan in March.

Ms Lynam said that while any improvement is welcome, it’s not moving quickly enough. She said: ‘What we need is a centre of excellence, which would be turning out more specialists and would bring the overall standard up higher.’ The Department of Health and HSE were both contacted for comment but did not respond.

lisa.o’donnell@dailymail.ie

‘It takes a toll on mental health’