Endometriosis advocate calls for changes to Government plans for treatment

Endometriosis advocate Aimee Brown is concerned that the new framework for treatment appears focused on less serious symptoms. Picture: Don Moloney

A Tipperary-based endometriosis advocate has called for changes to Government plans for treatment, saying women’s feedback was not heard.

Endometriosis affects an estimated one in 10 girls and women in Ireland and globally, according to the World Health Organization. A new, and first, framework for treatment was launched recently following public consultations. 

However, Aimee Brown queried the gap between these plans and what was expected.

“The first time I was in Leinster House was six weeks after my first surgery, in 2019, and that initiated the women’s taskforce, the radical listening project,” she said.

Now, it feels like we have wasted the last four years, pouring our hearts out through these focus groups, online surveys, and forums, constantly feeding back only to not be heard at all.” 

She is concerned the framework appears focused on community care and less serious symptoms, with not enough support for surgery.

Ms Brown said without funding for many specialists, women will still face long waits for effective treatment.

She attended a screening of the endometriosis documentary Under the Belt at Leinster House before Easter.

“We didn’t have a single representative from the minister for health,” she said. “Some of the TDs sent emails to the minister afterwards, but he reiterated the same plan to them. The reason we were there is because we're so worried about the plan.” 

Ms Brown is still going through treatment and has "struggled" with bills following time off work to recover from surgery. 

While she is now eligible to receive cannabis for medical use, endometriosis is not one of three conditions eligible for funding and access.

“Aside from having to borrow money, it is going straightforward,” she said, noting a particular challenge this week as the Easter break delayed benefits she was expecting, leaving her hoping for last-minute help.

“I have a medical card, but you cannot get cannabis covered,” she said. “I could get all the opioid medicines they’d like to throw at me, but I don’t need them anymore. I feel like the State has let me down, I feel like I don’t matter." 

GP care

Among proposals for GP care in the new framework is for treatment to begin in parallel with investigations of potential causes, as empirical treatment for suspected endometriosis.

Irish College of General Practitioners clinical lead in women’s health Ciara McCarthy said: “Chronic pelvic pain is a common presenting symptom in general practice, affecting up to one in six women. In a patient presenting with chronic pelvic pain, endometriosis is one of several possible diagnoses.” 

She said the new approach aims to “reduce the physical and psychological distress associated with delays in diagnosis and treatment”. 

She expects GP treatment to continue around control of symptoms such as pelvic pain and heavy or painful menstrual periods. 

“For patients who require specialist endometriosis care (these might be patients with debilitating symptoms at presentation, those who do not respond to initial treatment, or those presenting with infertility), the establishment of the six regional endometriosis hubs will allow structured and equal access to multi-disciplinary teams across the country.” 

These hubs and “two super-specialist endometriosis centres in Cork and Tallaght” will be developed over the coming year, she said.

A community gynaecology course including endometriosis has been attended by more than 300 GPs and practice nurses, and a quick reference guide on diagnosis and management for GPs is under development.