Shine A Light Explores Women Living with Endometriosis And The Call for Earlier Diagnosis and Better Care

Women living with endometriosis have spoken openly about the pain, isolation and years of uncertainty they experienced while trying to secure a diagnosis and appropriate treatment.

On this week’s Shine a Light with Siobhán Murphy, Orla Quirke, Rena Bright and Fiona Hudson described how the condition can affect every part of a woman’s life, including her physical and mental health, fertility, relationships, career and finances.

All three said one of the most damaging experiences was repeatedly being told that severe symptoms were normal or simply “bad periods.”

Rena said her symptoms began when she was a teenager, but it took years before she received answers. She also spoke about the emotional toll of infertility and the pressure of waiting for both surgery and fertility services.

Orla described undergoing five operations after becoming seriously ill in 2020. Her endometriosis was so severe that she eventually required major open surgery.

She said she was devastated after being described as a “bed blocker” and advised to seek psychiatric help while waiting for treatment.

Orla said the physical pain was made worse by constantly having to prove that her symptoms were genuine.

Fiona said Ireland had made progress in women’s healthcare but access to specialist endometriosis services remains extremely difficult.

She said women can face long waits in both the public and private systems and may undergo repeated scans, procedures and surgeries before receiving appropriate care.

The women also highlighted the significant financial cost of private consultations, surgery, scans, physiotherapy, counselling, pain management and fertility treatment.

Orla established Endo Wexford to create a safe space where women could meet others who understood what they were experiencing.

The group was launched with the support of Councillor Robbie Staples and has since organised educational talks and created an information leaflet for newly diagnosed patients.

The leaflet has been distributed to Wexford General Hospital and local GP practices.

Fiona described the group as life-changing saying it helped women feel believed supported and less alone.

Endo Wexford is also working with Senator Cathal Byrne and Councillor Staples on issues including workplace awareness and improved services.

The women called for better endometriosis training for GPs, faster access to specialist care and improved workplace support.

They said girls and women reporting severe pain, heavy bleeding, exhaustion or other life-altering symptoms must be taken seriously.

The programme also heard calls for clearer protections for employees living with endometriosis, particularly those who require frequent bathroom breaks, medical appointments or flexibility during severe flare-ups.

Concerns were also raised about access to fertility services, long waiting times and the need for better coordination between surgery and fertility treatment.

Their message was clear: pain that disrupts a woman’s education, career, relationships or daily life should never be dismissed as simply part of being a woman.

Political representatives have pledged to continue pressing for improved endometriosis services after hearing first-hand from members of Endo Wexford about the challenges women continue to face.

Senator Cathal Byrne and Councillor Robbie Staples praised the bravery of the women who shared their experiences and said those conversations had shaped ongoing discussions with Minister for Health Jennifer Carroll MacNeill.

The pair said improving awareness among GPs and healthcare professionals, reducing waiting times and ensuring better access to specialist care remain key priorities. They also pointed to the Government's €11 million ring-fenced investment in the National Endometriosis Framework as a positive step but acknowledged that more work is needed to ensure women receive timely diagnosis, treatment and compassionate care.

Senator Byrne said progress had been made but stressed that the work is far from complete, adding that every woman diagnosed with endometriosis deserves to be treated with respect, compassion and understanding by the health service.

The Podcast for Shine a Light with Siobhán Murphy is available on the South East Radio website and through podcast platforms.

This programme is funded by the news reporting scheme