A perplexing mystery unfolds
Lisa-Claire Walsh’s journey began with what seemed like ordinary neck and shoulder pain in 2015. Over years, she endured countless scans, appointments with orthopaedic surgeons, and neurologists, only to be told that there was nothing seriously wrong. The pain persisted, intensifying with no clear explanation.
“I went to a neurologist, pain consultant, had MRIs, everything, but the pain was only getting worse,” she recalled. It wasn’t until she turned to Google that a spark of clarity emerged. She searched her symptoms against her own hunch and uncovered diaphragmatic endometriosis — a rare form of the condition that can affect organs well beyond the pelvic region.
Diagnosis and a complex prognosis
After years of uncertainty, Lisa-Claire was diagnosed in January 2024 with stage four diaphragmatic endometriosis. At 29, she learned that the disease had spread to the diaphragm, with implications for the lungs and heart. Doctors described “the right side of my diaphragm” as “completely destroyed,” a stark reality that requires multi-stage, specialized surgery.
Her treatment plan includes chemical menopause therapy and planned surgeries starting in November on the left side and pelvis, with the possibility of addressing the right side later, depending on recovery and cardiac considerations.
The road to treatment and resilience
Because such procedures can involve extended stays abroad for rehabilitation, Lisa-Claire has secured health insurance covering medical costs but still faces travel and accommodation expenses. She has launched a GoFundMe campaign to help fund these critical needs, and has already raised more than €775. She emphasizes that every contribution, regardless of size, matters.
“Any contribution, no matter the size, means so much to me,” she said. Each operation means she must stay in Oxford for two to three weeks for specialist physiotherapy and check-ups.
A platform that changes lives: The Her Voice Project
Lisa-Claire doesn’t navigate this journey alone. Along with two friends, Robyn Murray and Jade Maples, she co-founded The Her Voice Project — an online support community that now reaches nearly 10,000 followers. The project is more than a forum; it is a lifeline for women seeking earlier diagnoses and better information about endometriosis, including the rarer thoracic and diaphragmatic forms.
Through shared stories, the project has helped women secure earlier care and recognize symptoms that doctors might overlook. It has also organized a Dublin photo exhibition and a spring retreat intended to connect women living with endometriosis in real life, fostering resilience and solidarity.
Advocacy and a national impact
Her work with The Her Voice Project has dovetailed with a new career milestone: Lisa-Claire was appointed to the Department of Health’s Endometriosis Advisory Board under the Women’s Health Task Force. Her lived experience is now part of a formal effort to improve care for women across Ireland, addressing gaps in awareness and timely diagnosis that persist for rarer forms of the disease.
“If you feel like something isn’t right, don’t give up,” she says. “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 this moment means for patients and families
Endometriosis affects about one in ten women, yet awareness remains uneven, particularly of diaphragmatic endometriosis and thoracic involvement. Lisa-Claire’s story underscores the need for sustained support — medical, financial, and emotional — for patients whose symptoms cross traditional clinical boundaries.
Her message resonates with families and healthcare professionals alike: listen to your body, pursue persistent care, and support initiatives that connect patients with clinicians who understand rare disease trajectories. As she embraces the upcoming surgeries and ongoing advocacy, Lisa-Claire’s commitment to helping others remains clear: sharing stories can prompt earlier diagnoses and better outcomes for women with endometriosis.
