Mum Shares Her Story to Support National Endometriosis Registry

Endometriosis is a chronic condition where tissue similar to the lining of the womb grows outside the uterus, causing severe pain, fatigue, and sometimes infertility. It affects around 1 in 10 women and people assigned female at birth in the UK, often leading to delayed diagnosis, with many waiting 7–10 years.

Holly first experienced symptoms at 15, but her condition was dismissed by local gynaecology services. “The pain was unbearable, but the head of the department told my mum and me I was ‘attention seeking’ and that even if they operated, they wouldn’t find anything,” she recalls. It wasn’t until a second opinion and surgery that Holly was finally diagnosed, revealing severe scarring on her left ovary.

The impact on Holly’s life has been profound. “I’ve been bedbound for long periods, I use a walker to get around, and I’ve missed countless moments with my kids. My husband had to leave his job to care for me. Endometriosis affects everything — work, relationships, and your ability to live a normal life,” she explains. She also highlights the emotional toll: “Physically, I am in constant, crippling pain. Emotionally, I felt dismissed, ashamed, and isolated. Missing out on normal teenage life while being told my suffering wasn’t real was incredibly hard.”

Holly’s experiences with local healthcare services illustrate systemic problems. “Some doctors have been amazing, but gynaecology services repeatedly dismissed me, accused me of drug-seeking, and ignored the evidence of my condition,” she says. “I was promised an MRI after a month in hospital, but it wasn’t even ordered. Appointments were cancelled, and I had to chase it myself. Surgery was later called ‘futile’ because they said they couldn’t remove the endometriosis.”

Holly supports the push for a national endometriosis registry, which would track treatments and outcomes across the UK. “Aregistry could change everything. It would make it harder for women’s pain to be dismissed, help doctors track the disease properly, and lead to faster diagnoses and better treatments,” she says.

Jessica Smith, campaigner for the national endometriosis registry, adds: “Holly’s story shows the human cost of a system without clear data. As someone who also lives with endometriosis, I know how painful it can be to be dismissed or misdiagnosed. A national registry would give doctors the evidence they need, help patients access the right treatments faster, and ensure no one has to fight for care alone. You can support this change by signing the petition. Every signature brings us closer to better care for everyone affected.

To read and sign the petition, visit: https://petition.parliament.uk/petitions/736164