Cork Patient Urges Expanded Endometriosis Support Following Framework Launch

A patient living with endometriosis in Cork has expressed disappointment with Ireland’s newly launched endometriosis framework, urging for more comprehensive support measures. The framework, introduced earlier this month, aims to enhance treatment pathways and assist general practitioners in referring women for specialized care. Following an 18-month delay, the initiative has received mixed reactions from patients, particularly regarding its implications for those who are post-menopausal.

The framework outlines expanded care at specialist centers, including the Cork University Maternity Hospital and Tallaght University Hospital. An estimated one in seven women in Ireland suffers from endometriosis, a condition characterized by debilitating pain and other symptoms. According to recent data from Australia, this significant statistic highlights the urgency of effective treatment and support.

Jess Ní Mhaoláin, who underwent multiple surgeries for her condition, including a hysterectomy at age 27, criticized a specific reference in the framework that seems to overlook the needs of post-menopausal women. The document mentions that patients experience “associated symptoms post-menopause,” which Ní Mhaoláin argues misrepresents the reality of ongoing endometriosis symptoms after menopause. She stated, “All that will do is limit my access to pain relief, because they’re telling people that endometriosis doesn’t occur in menopause, when I know for a fact it does.”

Currently seeking treatment in London, Ní Mhaoláin has been informed of a “full recurrence” of her condition, prompting her to question the effectiveness of the new specialist centers. “When my pains started to come back, one of my doctors said to me, ‘you know it does come back’,” she shared. “Why would I bother going to one of the supra-regional centres now?”

The recently established framework also includes interim funding for treatment abroad, which has already attracted applications, according to the Health Service Executive (HSE). Ní Mhaoláin acknowledged the potential benefits of this funding but emphasized the necessity for proper oversight. “That funding is brilliant, it will work, but it just needs to be tweaked. The health minister needs to put the right doctors on it,” she remarked, noting that the medical team she sees in London is not recognized in the current framework, forcing her to continue covering costs privately.

In response to these concerns, the Her Voice Project has announced plans for protests next month, advocating for the inclusion of specific clinics in Greece and Romania on the approved treatment list. The HSE has stated that its list is under continuous review and can only include clinics that meet recognized accreditation standards.

Ní Mhaoláin also expressed disappointment regarding the lack of support for doctors seeking to enhance their skills in treating endometriosis. “There is very little in it about upskilling doctors; they talked about it, but there was no detail, such as ‘as part of this framework, we are going to launch a fellowship’,” she noted. This gap in training resources can hinder effective treatment for many patients.

As someone who now works in Dublin with Sinn Féin, Ní Mhaoláin continues to travel back to see her GP in Cork, who has made efforts to educate himself about endometriosis. Many patients have voiced their frustrations on social media, particularly regarding the recommendation to use paracetamol for managing pain. “Some of the advice is offensive; the reference to paracetamol just set people on fire, and you can understand why,” she explained, adding that such measures do not adequately address the severity of her pain.

Writing in support of the framework, Health Minister Jennifer Carroll MacNeill stated that it aims to “raise awareness of the symptoms of endometriosis and improve the time for diagnosis for women and girls presenting with indicative symptoms.” As the framework progresses, the ongoing dialogue among patients, healthcare providers, and policymakers will be crucial in addressing the complexities of endometriosis treatment and support in Ireland.