Endometriosis left woman with 'pain so intense it left me vomiting', politicians told

Members of the Endometriosis Association of Ireland spoke at a cross-party event in Leinster House on Tuesday, organised by Paul Lawless of Aontú, far right. Picture: Aontú. 

A woman who suffered with pain so intense it left her vomiting and near fainting was among those who spoke about endometriosis to a cross-party meeting with TDs and senators on Tuesday.

Louise Doyle is a member of the Endometriosis Association of Ireland. The charity spoke to politicians to highlight frustrations at the slow pace of reforms in care.

“I was prescribed the contraceptive pill at a young age to manage irregular and heavy periods, something that unknowingly masked my symptoms for years,” she said.

It was only when she stopped taking it in preparation for an unrelated surgery that the full extent of her symptoms became clear.

“I began experiencing debilitating pain, so intense it left me vomiting and on the verge of fainting," she told the meeting. 

"Initially, it was assumed to be a post-operative complication, but after nearly a year of searching for answers, I was finally diagnosed with endometriosis." 

Ms Doyle described herself as “lucky” to have a diagnosis, pointing out many women struggle for years to have this identified.

The Irish Examiner reported last week talks between GPs and the HSE on the final stages of a long-delayed endometriosis framework are yet to start. 

This document had been expected to be published last year.

She said this was “the biggest challenge” facing the community. 

“This framework is not just a bureaucratic milestone,” she said.

“It is essential for establishing consistent, nationwide standards of care. Without it, there is no clear pathway for patients when they present to a GP."

She warned "diagnosis and treatment remain a postcode lottery, and access to timely, specialised care continues to be the exception rather than the rule".

The meeting in Leinster House was attended by Government and opposition parties. The invitation was issued by Aontú TD Paul Lawless. It is the structure of these type of meetings that a TD invites the speakers.

Pádraig Rice, chair of the Oireachtas health committee and Social Democrats TD for Cork South-Central, also attended.

Endometriosis is an issue already flagged by committee members for a potential session, he said. "This something we will certainly consider”.

The Endometriosis Association of Ireland is a volunteer-led charity, with fewer than 12 active volunteers. It does not receive HSE funding but has become more prominent in efforts to improve services over recent years.

Vice-chair Damien Donoghue said it was important for politicians to hear “compelling stories” Ms Doyle and other women shared.

“They were receptive to the concerns we raised,” he said. 

"The main thing from Louise’s perspective, from Holly’s perspective and Ellen's is they delivered the message that more needs to be done.” 

He echoed concerns about the framework. “Why is it still stalled, this is scandalous at this stage? We have been waiting since April, and there is no visibility on when it’s being published." he said.

The meeting also heard discussion of staffing vacancies at new centres being set up under changes to care.

In a sign of the lack of supports, an email and telephone appointment advice service officially launched by the Endometriosis Association of Ireland earlier this month is already booked up until mid-June. 

Women are advised on navigating the health system, he explained.