WOMEN IN IRELAND suffering from Endometriosis have called on the Government to establish a working group to address the long waiting times for diagnosis and treatment of the condition. 

It comes following new research in the UK by the BBC, which found that half of the 13,500 women it surveyed reported being addicted to painkillers and having suicidal thoughts. 

The condition, which is caused by abnormal cell growth outside the uterus and leads to severe pain for sufferers, affects one in 10 women in Ireland. 

In Ireland the waiting time for diagnosis according to the Endometriosis Association of Ireland (EAI) is up to nine years – longer than the seven-and-a-half years reported in the UK. 

While an all-party group  was established in the UK to address the issue in 2018, there has been no such group established in Ireland, prompting new calls for action at government-level. 

“I think it would be very important to bring endometriosis to the attention of the Government in terms of educating young women so they are not left with late diagnosis into their thirties, causing other diseases and often infertility at that stage,” Kathleen King, chair of the EAI said. 

“That group should look at education, primarily for young women so they know what they’re going through is abnormal and what to expect. 

“Access to appropriate specialists and surgeons at an early stage which can help stop the progression of disease and the subsequent impact it has should be part of it too.

We have women who have lost organs and develop life-changing diseases from it.

“We also need to reduce the amount of ineffectual surgeries women are going through, Ireland has a high rate of repeat surgeries for women with endometriosis so we should be looking at this.” 

Endometriosis occurs when cell tissue begins to grow outside of the uterus, secreting substances which then irritate surrounding tissue, causing bleeding. This prompts an immune response which causes swelling and irritation. 

Sufferers report experiencing severe pain and vomiting, particularly during their periods when hormone levels fluctuate. 

The cells, if left untreated, can also spread and cause damage to other organs including the kidneys and bowels. 

Catastrophic

Sarah Maloney (34) from Dublin has been suffering from the condition from the age of 14 but was not formally diagnosed until two years ago when she was 32 years old. 

She told TheJournal.ie that she had been misdiagnosed with Irritable Bowel Syndrome and other conditions before consultants finally confirmed it was endometriosis in 2017. 

“I was back and forth with doctors, mainly for gastro treatments, and they kept sending me for colonoscopies. 

“I had bloating, severe pain and I was just generally quite sick. I was managing it but then I hit about 30 and things went rapidly downhill. I couldn’t go to work, I was very sick and vomiting. I was constantly bleeding. The pain was awful. 

It’s been catastrophic. It’s stopped me from doing things and the likelihood of me having children is slim to none because every time you have surgery it reduces your chances.

“Luckily I had a good GP and he thought it was sinister so he referred me to a gynaecology clinic. But I was in the public system and I was told it would be 18 months before I would be seen.”

Maloney, who works in the fitness industry, was eventually treated and operated on by HSE doctors who advised her there was some evidence of endometriosis, but that they had removed it in surgery and that she would be fine.

The pain did not subside, however, and she was forced to take out a loan and travel for treatment to the UK as a result.  

“I had to go private and borrow €8,000 from the credit union, and I went to a surgeon in the UK,” she said. 

The surgeon said I was covered in endometriosis in all of my organs. He said he did his best and took all the damaged tissue but I’ve been left with significant damage and lesions.

Centre of excellence

King said other countries, including Germany and Austria, have become centres of excellence for the treatment and diagnosis of endometriosis but Ireland still lags in this area, with only a small number of experts in Ireland – something she says could be addressed by a working group. 

“A lot of doctors fail to recognise and fail to treat women for it, so when you have women presenting with something like bowel pains they might not jump to the right diagnosis.

“I think, when we speak to medical professionals, they tell us they receive very little education in endometriosis and it’s very hard to distinguish the symptoms from something else.

“And then women don’t recognise the symptoms as abnormal in the first place. They may think it’s just period pain even though it’s a lot worse than other, maybe other members of their family suffered severe pain and this is nothing out of the blue for them.”

A spokesperson for Health Minister Simon Harris said it is expected that endometriosis will be on the upcoming agenda of a women’s health task force set up last month

“The task force will tackle a wide range of issues impacting women’s health outcomes in Ireland and will work on these on a phased, prioritised basis,” they said.

“The first action will be a radical listening exercise that will invite women in Ireland to share their experiences of, and solutions for, the health system.”

“The Minister expects endometriosis will form part of their work,” they added.

The Endometriosis Association of Ireland is holding an information day for women at the Carlton Airport Hotel in Dublin on 2 November.