Warwickshire woman 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 one in 10 women and people assigned female at birth in the UK, with many waiting seven to 10 years for a diagnosis.

For Deanna, the suffering began at just 13. “I was in so much pain my GP sent me to hospital thinking it was appendicitis. When my periods started, they were heavy and relentless, and within a year I was exhausted, nauseous, and in constant pain,” she recalls.

By 16, she was visiting the GP regularly, but told her periods would “settle.” Instead, they worsened.

By 17, she was prescribed mefenamic acid and soon opioid painkillers to cope. By 19, she had been through almost every contraceptive pill available, none of which helped.

“Each one made me worse. The pain became unbearable, the nausea was constant, and migraines started,” she explains. At university, she tried the Mirena coil, the patch, and the implant.

“The coil fell out three times, the patch made me bleed constantly, and the implant caused such horrific mood swings that I ripped it out myself in my student kitchen. I felt like I was running out of options.”

Despite years of pain, GPs insisted her scans showed “nothing wrong.” When she finally collapsed in agony in 2023, vomiting and bleeding heavily on her bathroom floor, her family had to call an ambulance. An ultrasound revealed endometriomas. A gynaecologist dismissed her, shouting at her for not wanting children and writing in her notes that it was “in her head.”

It wasn’t until a private MRI in 2024 that Deanna had proof: four endometriomas, an ovary fused to her muscle wall, and deep infiltrating endometriosis.

“Getting that diagnosis was bittersweet. It was proof I wasn’t imagining it — but also a stark reminder that there’s no cure, and not nearly enough answers. It felt like my whole life had been stolen without anyone being held accountable.”

The impact has been devastating. Deanna now walks with a stick, unable to put her right foot flat on the ground because of adhesions. She relies on her parents for daily care, her father carrying her upstairs and helping her in and out of the bath.

“I lost my job, my independence, and the hobbies that made me who I am. I used to be a racing driver, a Brownie leader, and a community volunteer. Now I’m mostly housebound and bedbound.”

Endometriosis has also robbed her of education and friendships. “I struggled through my master’s degree, but now the brain fog and fatigue mean I can’t even complete a crossword. Most of my friends walked away because I was too unwell. It’s left me isolated and grieving the life I had.”

She is now waiting for higher-intensity CBT to cope with the mental toll.

Her experiences with healthcare have deepened the trauma. “I’ve been shouted at, belittled, and made to feel like a hypochondriac. I ask questions because I’m autistic and need clear information, but doctors write in my notes that I ‘ask too many questions.’ Even when I explain I have severe allergies that can close my throat, I’m told I’m being difficult for refusing treatments. It feels like I’m battling the system instead of being cared for.”

Deanna strongly supports the creation of a national endometriosis registry, which would track treatments and outcomes across the UK.

“Right now, endometriosis care feels like guesswork. A national registry would mean patients aren’t dismissed so easily, doctors could see what treatments really work, and we’d finally start building the evidence needed to change things,” she says.

She believes it could go even further: “The registry should also capture mental health outcomes and hold hospitals and consultants accountable for the quality of care. No woman should be left in pain for decades with no answers.”

Jessica Smith, the health campaigner behind the petition, adds: “Deanna’s story highlights how broken the system is. Years of suffering, trial-and-error treatments, and no real answers. Without proper data, women are left to fight the same battles over and over again. A registry would give us the tools to stop this cycle, push for better treatments, and hold services accountable. It’s about making sure no one else has to lose their health, career, or independence before being taken seriously.”

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