Minister for Health launches Ireland’s first national endometriosis framework

A momentous milestone in the evolution of women’s healthcare in Ireland

This is a momentous milestone in the evolution of women’s healthcare in Ireland.

The framework establishes, for the first time, a defined clinical care pathway for women and girls living with endometriosis. It is understood that 155,000 women suffer from the condition in Ireland.

The framework was developed by the HSE's National Women and Infants Health Programme. It aims to reflect "the voices of patient advocates" across the country. The framework will also help transform how endometriosis is recognised and treated across the country."

Central to the Model of Care is the principle of presumed diagnosis, proposing that a woman presenting with symptoms should be treated on the presumption that she has endometriosis.

This model acknowledges that women are the most reliable narrators of their own symptoms and pain. The framework will reduce delays in the management of symptoms, according to the HSE.

The team behind the framework hope it will reduce the overall impact of this disease on women.

The care pathway spans primary care to secondary care and complex tertiary care. Moderate cases will be treated in five regional specialist centres.

Three centres are already established in the Rotunda Hospital, the Coombe Hospital, and University Hospital Limerick.

However, two more are also in development at University Hospital Galway and the National Maternity Hospital.

Complex cases will be referred to two supra-regional centres in Tallaght University Hospital and Cork University Maternity Hospital.

"Endometriosis has long been an under-recognised and under-treated condition."

Clinical Director of NWIHP, Dr Cliona Murphy, said this framework has been years in the making.

"We are one of the few countries that have such a document. The framework provides a structured approach to help clinicians provide quality clinical care for women dealing with this difficult condition.

"Much progress has occurred in this space, and this is a roadmap for future improvements. We hope to build on this framework to reduce diagnostic and wait times and raise awareness of the available services."

Minister Carroll MacNeill added:

“Endometriosis has long been an under-recognised and under-treated condition, but progress is now being made in raising awareness and enhancing our services."

"The completion of the National Framework for the Management of Endometriosis in Ireland is an important step in providing a clear pathway for the management and treatment of this often-debilitating condition. It puts women’s experience of their symptoms at the centre. It will raise awareness in the clinical community, reduce time to diagnosis, and ensure timely and effective treatment."

The Minister for Health said she is committed to expanding endometriosis services and supports in Ireland.

Minister Carroll MacNeill has also mandated several actions to accelerate access to care for women affected by endometriosis.

The HSE will increase the number of surgeries over the coming months. It will carry out more than 100 additional surgeries for women waiting for treatment across all regions.

An additional colorectal surgeon has been advertised for recruitment by the HSE. They will serve to facilitate and increase capacity for more complex surgical treatments.

The HSE is supporting women with access to treatment abroad. Information on how to apply, including a dedicated email address, is available at hse.ie/endometriosisabroad.

An Endometriosis Advisory Group, with membership from patient advocates and the Women’s Health Taskforce, has been established. They will meet soon to advise on specific actions in relation to endometriosis.

International endometriosis experts will be invited to collaborate and engage with clinicians to improve treatment options. They also hope to educate, build expertise and share learnings. This will serve to build ongoing and enduring relationships with international experts in this field.

The HSE will also be communicating with all GPs, consultants and other clinicians to raise awareness of endometriosis in their clinical assessments.

A national awareness campaign will also be developed around menstrual health, including endometriosis, early next year.

What is endometriosis?

Endometriosis is among the most prevalent health conditions affecting women in Ireland, for which currently, there is currently no known cure.

The exact number of women who have endometriosis is unknown, but recent research estimates that it may affect as many as one in seven women.

It is characterised by a growth of endometrium-like cells outside the uterus. While its precise cause is unclear, it’s understood to be a hormone-mediated condition and occurs during a woman’s reproductive years.

Symptoms of endometriosis can vary in number and severity, but can include pelvic pain, menstrual pain, fatigue, diarrhoea, constipation, bloating and nausea.