Unseen pain,diagnosis delayed
Lisa-Claire Walsh’s health journey began in 2015 with neck and shoulder pain that seemed ordinary at first. Over years, the pain intensified, yet medical scans and consultations with orthopaedic surgeons and neurologists failed to reveal a clear cause. “I went to a neurologist, pain consultant, had MRIs, everything, but the pain was only getting worse,” she recalls. Like many patients with endometriosis, she faced a confusing path marked by dismissals and misperceptions about age and severity.
Her breakthrough arrived after a moment of research that many patients find perilous: the search for patterns outside the obvious. “One day, I decided to Google my symptoms — even though I know you’re not supposed to — and I came across diaphragmatic endometriosis,” she explains. With that glimpse, a long, arduous diagnostic process began to make sense. In January 2024, after years of uncertainty, Lisa-Claire received a diagnosis of stage four diaphragmatic endometriosis, a form that can affect organs beyond the pelvis, including the diaphragm, lungs, and potentially the heart.
Complex care on the horizon
Diagnosed at age 29, Lisa-Claire has already undergone chemical menopause treatment as doctors map out a plan of complex reconstructive surgeries on her diaphragm. The prognosis is cautious: multiple operations staged over time. “The right side of my diaphragm is completely destroyed,” she says. The sequence includes a surgery on the left side and pelvis in November, with the right side—already impacting her heart—being considered for subsequent procedures depending on recovery and outcomes.
Beyond the medical challenge, the road involves practical needs. Each operation requires Lisa-Claire to stay in Oxford for two to three weeks for physio check-ups and rehabilitation. While her health insurance covers medical costs, travel and accommodation expenses add up quickly, prompting a fundraising effort with GoFundMe. To date, supporters have raised more than €775, a tangible sign of community backing for her courage and perseverance.
Raising awareness, building a support network
Endometriosis affects about one in ten women, yet awareness remains inconsistent, especially for less common forms like diaphragmatic endometriosis. Lisa-Claire has dedicated herself to changing that through The Her Voice Project, a collaborative online platform she co-founded with two friends, Robyn Murray and Jade Maples. The initiative has grown to nearly 10,000 followers and has helped multiple women secure earlier diagnoses. The group also plans a Dublin photo exhibition and a spring retreat to connect women living with the condition in person.
Her family—including parents Michael and Philomena and partner Adam—has been a pillar of support, but Lisa-Claire notes that the Her Voice Project page is what keeps her going. “We’ve already helped women get diagnosed with thoracic endometriosis because of it. It’s proof that sharing these stories can make a difference,” she says. Her advocacy extends to formal recognition: she has been appointed to the Department of Health’s Endometriosis Advisory Board under the Women’s Health Task Force, a role she hopes will drive long-term improvements in care across Ireland.
A message to readers: advocate for your health
Lisa-Claire’s message is clear and resonant: “If you feel like something isn’t right, don’t give up. 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.” Her story is a reminder that rare conditions can manifest in invisible ways, and timely, compassionate care is essential for improving outcomes.
