Cork Patient Urges Urgent Expansion of Endometriosis Support

UPDATE: A Cork endometriosis patient is urgently calling for expanded support systems as new treatment plans fail to address critical needs. Jess Ní Mhaoláin, who has undergone multiple surgeries, including a hysterectomy at just 27 years old, expresses deep disappointment with Ireland’s first endometriosis framework, unveiled earlier this month.

The framework, delayed by nearly 18 months, aims to establish a clearer care pathway for women suffering from endometriosis, which affects an estimated one in seven women in Ireland. It includes expanded care at specialist centers like Cork University Maternity Hospital and Tallaght University Hospital. However, Ní Mhaoláin argues that the framework inadequately addresses the needs of post-menopausal women, stating, “All that will do is limit my access to pain relief.”

Currently receiving treatment in London, Ní Mhaoláin reports a “full recurrence” of her symptoms, which her doctors confirmed can happen even after menopause. “Why would I bother going to one of the supra-regional centers now?” she questions, reflecting the frustration of many patients who feel overlooked.

The framework does offer interim funding for treatment abroad, but Ní Mhaoláin insists it needs improvement. “That funding is brilliant, it will work, but it just needs to be tweaked,” she said, stressing the importance of including renowned specialists who can provide effective treatment.

In response to the growing discontent, the Health Service Executive (HSE) stated that the list of approved clinics is continuously reviewed, emphasizing its commitment to recognized accreditation systems. However, a separate advocacy group, Her Voice Project, plans protests next month, demanding the inclusion of clinics in Greece and Romania.

Ní Mhaoláin also highlighted the lack of resources for doctors to enhance their knowledge and skills in treating endometriosis, noting that while some GPs are proactive, many are not equipped to handle such a complex condition. She criticized the framework for not providing concrete plans for upskilling, stating, “There is very little in it about upskilling doctors; they talked about it, but there was no detail.”

Social media has exploded with reactions from frustrated patients, particularly regarding the advice to take paracetamol for managing pain. Ní Mhaoláin described the response to this suggestion as “offensive,” asserting that such advice does not even scratch the surface of the debilitating pain experienced by many.

In an official statement, Health Minister Jennifer Carroll MacNeill emphasized that the framework aims to improve awareness and diagnosis times for women with endometriosis. However, for many, including Ní Mhaoláin, the measures are far from sufficient.

As the conversation around endometriosis treatment continues to evolve, the urgent call for more comprehensive support resonates loudly among patients and advocates. The situation remains dynamic, with many looking for immediate changes that could significantly impact their quality of life.