Long labour reveals hidden condition: Adenomyosis linked to pregnancy risks in Wales

An 85-hour labour and a neonatal intensive care unit stay for her first child helped Lana Boocock understand why her health problems persisted for years. After being diagnosed with adenomyosis, the Caerphilly mother says the long, painful pregnancies now make sense—and she is among many women whose symptoms were dismissed for years.

Adenomyosis is a condition in which the lining of the womb grows into the muscle wall, causing heavy periods and pelvic pain. It can also complicate pregnancy. Consultant gynaecologist Anthony Griffiths says pregnant women with adenomyosis have a higher risk of miscarriage, premature birth and pre-eclampsia, though those risks can be managed with closer monitoring. "It's remarkably common, it's just we're not looking for it," he said.

Boocock, who also has endometriosis, said she spent years with debilitating symptoms, relying on a walking stick and dealing with heavy bleeding and fatigue. "I was haemorrhaging every couple of weeks, my iron levels were critically low and I had no energy to do anything," she told BBC Wales. The pain began in her hip and, over time, became constant and excruciating. She said after years of medical appointments and being told it was "just part of being a woman" or possibly IBS, she eventually paid for a hysterectomy while keeping her ovaries. "At some points when I was so poorly before my surgery, I was suicidal. I was in so much pain it was ruining my life." When she finally saw an NHS gynaecologist and asked to be placed on the hysterectomy list, the consultant reportedly said, "You're too young, you'll lose your fertility." She persisted to improve her quality of life, and three months after surgery she described life as "just fantastic." She added that she hopes more women get the care they need and that adenomyosis is taken more seriously.

Dr Griffiths said high-quality MRIs are now detecting the condition in much younger women, and that around a third of the women he sees with endometriosis have some adenomyosis. "Adenomyosis and endometriosis are different diseases, but there are similarities—people can present with heavy periods, agonising pain often with periods but it can be throughout the menstrual cycle." He noted that education and resources have historically lagged behind what science now supports.

Dee Montague-Coast, from the charity Fair Treatment for the Women of Wales, said there are more than 158,000 people living with adenomyosis in Wales. "Yet in our experience, people won't have heard of it before. Often their healthcare professionals haven't heard of it either." She added that adenomyosis was only recently added to the NHS 111 website after a petition by the charity. "If people can't find information on it, that harms patients, it contributes to diagnostic delays, but also harms healthcare professionals looking for this information."

Mr Griffiths said treatment options for both adenomyosis and endometriosis have improved but there is limited diagnostic capability within the NHS. "There's obviously financial constraints everywhere, but unless you recognise there's a problem – and a significant problem – you're not going to allocate healthcare," he said. "We know it ruins lives. There's high suicide within this bracket of people because they've got agonising, intractable symptoms, and yet are unable to get help."

A spokesperson from the Royal College of Obstetricians and Gynaecologists (RCOG) said: "The relationship between adenomyosis and pregnancy outcomes is complex, and current research remains limited and inconclusive. More investment is needed in research to understand its potential impact on fertility, miscarriage, and premature birth." They added that urgent action is required to reduce gynaecology waiting lists, with over 54,000 women in Wales currently waiting for care for conditions such as adenomyosis. "We welcome the Welsh government's recognition of adenomyosis in the Women's Health Plan. However, women's health continues to be chronically underfunded. The RCOG is calling on governments to prioritise investment in research, diagnostics, and treatments so that women affected by adenomyosis and similar conditions can access the care and answers they deserve."

The Welsh Government said endometriosis and adenomyosis were among the eight priority areas in the Women's Health Plan for Wales, outlining steps to improve services and experiences for women. Funding of £3 million is being used to deliver actions in the plan, with a focus on establishing a Women’s Health Hub in every health board by March 2026 and supporting timely diagnosis and management of conditions including adenomyosis.

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