Women suffering from endometriosis, a common but often misunderstood and debilitating condition, are speaking out about the challenges they face in securing a timely diagnosis.
At University Hospitals Bristol and Weston NHS Foundation Trust (UHBW), patients are raising awareness of endometriosis and its profound impact on daily life. Two patients, including nurse Gijimol Joseph and student Mia Harrison, have shared their stories, highlighting the long wait for diagnosis and the difference specialist care can make.
Endometriosis affects one in ten women but can be notoriously difficult to diagnose. Many patients struggle to access the investigations needed to confirm the condition, prolonging their suffering.
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Gijimol Joseph, both a patient and a nurse at UHBW, was not diagnosed until she was 38. In 2008, while trying for a second child, she was found to have hydrosalpinges—blocked, fluid-filled fallopian tubes—leading to abandoned surgery due to severe scarring. Encouraged by UHBW’s Endometriosis Advanced Nurse Practitioner Deborah Panes, Gijimol pursued further care, undergoing a successful laparoscopy performed by consultant Mr Oliver O’Donovan, who removed her fallopian tubes. She joyfully gave birth to her second child in 2019.
Gijimol reflected, “Deborah and Mr O’Donovan even visited me during my caesarean section. After so many years trying, I feel truly blessed to have my baby girl.”
Mr O’Donovan emphasized the often-overlooked impact of endometriosis on fertility. “Difficulty conceiving is as devastating as pain for many women. Our multidisciplinary team, including fertility specialists, helps turn hopeful outcomes into reality.”
Mia Harrison, 21, experienced severe pelvic pain from age 12. Despite worsening symptoms that limited her teenage life, it took seven years to receive a diagnosis. Multiple doctor visits often led only to painkiller prescriptions without answers. Even scans at 15 failed to detect the disease.
Mia shared, “Painful cramps trapped me, making me miss out on normal teenage experiences. I felt dismissed, as if I were exaggerating or weak. Researching on my own, I discovered endometriosis.”
Following a severe flare-up and an emergency visit, Mia advocated for herself to be tested for endometriosis. Though initially told she was too young to have it, a laparoscopy confirmed Stage Three endometriosis affecting her ovaries and bowel.
She has tried various treatments, including contraceptives and two laparoscopies, but pain persisted. After moving to Bristol for university, Mia engaged with UHBW’s Pelvic Pain Management Programme, which provides holistic support addressing both physical symptoms and emotional wellbeing.
Mia says, “The programme has given me strength and community. After years of feeling ignored, it was the first time healthcare professionals truly saw me and helped.”
Nurse Practitioner Deborah Panes noted, “Mia’s determination and participation in the programme exemplify the resilient spirit many patients show despite difficult journeys to diagnosis.”
Today, Mia channels her experience into her university art projects, using creativity to raise awareness and express the life-altering effects of endometriosis.
She explains, “Endometriosis affects every aspect of life—not just painful periods. Through my art, I hope to show what living with this disease feels like, helping others understand its invisible impact.”
These stories underscore the need for awareness, timely diagnosis, and compassionate, specialized care to improve the lives of women with endometriosis.