Rare diagnosis shines a light on a misunderstood condition
Lisa-Claire Walsh, a 29-year-old from Pallaskenry, Ireland, has spent nearly a decade chasing answers for persistent neck and shoulder pain that started in 2015. After years of scans and consultations with orthopaedic surgeons and neurologists, her symptoms remained unexplained and increasingly debilitating. It wasn’t until she took a chance on a web search that she uncovered one of the most challenging forms of endometriosis: diaphragmatic endometriosis, a disease that can spread beyond the pelvis to affect organs like the diaphragm, lungs, and even the heart.
From doubt to diagnosis: a transformative moment
Despite being told she was “too young” to have endometriosis, Lisa-Claire persisted. In January 2024, she received a diagnosis of stage four diaphragmatic endometriosis. The diagnosis explained years of pain that had confounded medical professionals and underscored how the condition can lie outside typical expectations for endometriosis. At 29, she has already begun chemical menopause treatment as doctors map out a plan to address the damage in multiple surgeries.
A complex treatment plan across multiple operations
Lisa-Claire’s doctors describe extensive diaphragmatic destruction on the right side, with plans to operate on the left side and the pelvis in November. Recovery will determine whether the team proceeds with further intervention on the right side, which has begun to impact heart function. The surgeries require careful staging, long recovery periods, and ongoing physiotherapy sessions in Oxford, adding a travel and accommodation burden that family and friends are helping to shoulder.
Rallying support: fundraising and advocacy
Thanks to a health insurance plan that covers her medical costs, fundraising is focused on travel, lodging, and the logistics of recovery away from home. To date, Lisa-Claire has raised over €775 on GoFundMe, with supporters urged to contribute whatever they can to ease the burden of multi-week stays abroad for treatment and rehabilitation.
Alongside two friends, Robyn Murray and Jade Maples, Lisa-Claire co-founded The Her Voice Project, an online platform that now reaches close to 10,000 followers. The project has helped several women gain earlier diagnoses and access to care, including awareness of thoracic endometriosis. The initiative also aims to host a Dublin photo exhibition and a spring retreat to connect women living with endometriosis, creating a community that can share experiences, resources, and hope.
Hope through lived experience: shaping policy and care
Earlier this week, Lisa-Claire was appointed to the Department of Health’s Endometriosis Advisory Board under the Women’s Health Task Force. Her personal journey, alongside the collective voice of The Her Voice Project, seeks to inform long-term improvements in Ireland’s care for women with endometriosis — especially rare and difficult-to-diagnose forms that can involve thoracic and cardiac complications.
Words of resilience for others facing similar journeys
Lisa-Claire’s message is clear: trust your instincts and advocate for your health. “If you feel like something isn’t right, don’t give up,” she said. “Doctors might tell you your scans or blood tests look fine, but that doesn’t always mean everything is okay. Keep advocating for yourself until you get answers.”
What’s next and how you can help
As she prepares for November’s left-sided and pelvic surgeries, the immediate goal is stabilization and a clear pathway to complete diaphragmatic reconstruction. Community donations, along with ongoing advocacy through The Her Voice Project, aim to shorten delays in diagnosis and improve access to specialized care for women with diaphragmatic and thoracic endometriosis across Ireland.
Closing note: a shared fight for better care
Lisa-Claire’s story is a reminder that endometriosis is not simply a pelvic issue, and rare presentations deserve attention, research, and compassionate care. With support, both practical and emotional, she continues to push for progress that could spare others the decades of uncertainty she experienced.
