Talks yet to begin on final stages of endometriosis framework

Sophie Whelan, Blackwater, Co Wexford, is among an estimated 155,000 women and girls living with endometriosis in Ireland. Picture: Patrick Browne

Talks have not yet started between the HSE and GPs on final stages of the endometriosis framework despite the fact it was due to be published over a year ago.

Questions are being raised over the plans as women warn of pent-up demand following historic neglect of this common condition.

Sophie Whelan, 21, is among an estimated 155,000 women and girls living with endometriosis in Ireland.

As a child in Wexford, she was told she had irritable bowel syndrome (IBS).

“I’d go into A&E in absolute agony and they’d say ‘nothing really wrong with you, you’ve IBS, go home and take a paracetamol’,” she said.

When her periods started at 15, she suffered with “nausea, vomiting, cramping” and other problems. 

My body was in constant pain, and deep down I knew something was seriously wrong.

At one point she was 10kg underweight. 

She was referred aged around 17 to a gynaecologist in Kilkenny. 

Endometriosis can be confirmed through laparoscopy surgery. 

“I had three laparoscopies with my gynaecologist, all in the space of 17 months,” she said. 

She was diagnosed with stage 2 uterus endometriosis in July 2023.

During this time, her studies at the South East Technological University in Waterford were dominated by illness, despite “fantastic” support from  friends and family.

She was then referred to the expanded supra-regional endometriosis centre at Tallaght University Hospital.

“I had to wait about a year and a half before I actually got to see [the consultant],” she said. 

“It was absolutely amazing. Why have I not had this years ago?”

She urged: “Having a specialist is the most important thing, so we need more doctors that are specialised in endo. 

"I’d to wait 18 months, that is way too long for something that is actively growing and potentially destroying your organs.” 

The framework would create pathways from GPs to regional centres and two supra-regional endometriosis centres in Cork and Tallaght.

It was expected in April 2024.

The HSE said it is “subject to engagement with stakeholders” including the Irish Medical Organisation for GPs.

The framework would create pathways from GPs to regional centres and two supra-regional endometriosis centres in Cork and Tallaght. File picture

“The stakeholder engagement is still ongoing, and the framework document should be ready for publication once that process is complete,” they said.

However the IMO said: “While there has been no engagement to date the IMO expect to be engaging with the HSE on this issue over the coming weeks.”  

They want to see endometriosis as part of a broader women's health programme run by GPs. 

Damien Donoghue, Endometriosis Association of Ireland vice-chair, said they are aware there were “difficulties in moving things forward”.

He warned: “The fundamental flaw is the fact there is no framework, so if you go and present to a GP they don’t know what to do next.” 

He noted: "There is positivity in the fact that I have directed people to the likes of Tallaght, less so to Cork, but as you can see with the vacancies in Cork it’s not a fully-staffed multi-disciplinary team yet.” 

It took "the bones of 18 months” for Tallaght as the first centre to be fully set-up, he estimated. 

"Until such time as the framework is published, it’s a moot point talking about the progress they’ve made because it’s complete luck whether you get seen or not," he said.