When Lana Boocock gave birth to her first child, the labour lasted for a gruelling 85 hours.

Her baby then needed to spend time in neonatal intensive care.

Ms Boocock, now a mum-of-two, said difficulties giving birth to both of her children became easier to understand when she was later diagnosed with adenomyosis, a condition which is believed to affect more than one in 10 women.

Pregnant women with adenomyosis are at a greater risk of complications during labour, according to consultant gynaecologist Anthony Griffiths, but the risks are not managed because it remains under-diagnosed.

“It’s remarkably common, it’s just we’re not looking for it,” said Mr Griffiths.

Adenomyosis is a condition where the lining of the womb starts growing into the muscle in the wall of the womb.

It can cause painful periods, heavy bleeding, pelvic pain and pain during sex.

Dr Griffiths said pregnant women with adenomyosis also had a much higher rate of miscarriage, premature births and issues like pre-eclampsia, but that risks could be well managed with increased monitoring by healthcare professionals.

“What I’ve learned is that [during labour] your uterus fails to contract properly and you have a failure to progress with labour – and that, to me, is exactly what happened,” said Ms Boocock, 30, from Caerphilly.

“It just makes me upset to think of how many women have gone through labour and had worse outcomes than me, because of these complications.”

Prior to her diagnosis, Ms Boocock – who also has endometriosis – had lived with debilitating symptoms that left her regularly needing to use a walking stick.

“I was haemorrhaging every couple of weeks, my iron levels were critically low and I had no energy to do anything,” she said.

The pain was centred in her hip and initially coincided with her menstrual cycle, but developed to be a constant, agonising problem.

She said after years of medical appointments and being told it was “just part of being a woman”, “probably IBS” or repeatedly being prescribed birth control, she paid for a hysterectomy, retaining 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.

“But when I finally got to see an NHS gynaecologist and asked to be put on the list for a hysterectomy, the consultant’s words were: ‘You’re too young, you’ll lose your fertility’.

“But I didn’t want my fertility, I wanted my quality of life.”

A hysterectomy will remove symptoms of adenomyosis, though it is not a cure for endometriosis.

However, Ms Boocock said three months on from her surgery life was “just fantastic”.

“I would love these diseases to be taken more seriously,” she said.

Mr Griffiths said medical textbooks from a decade ago defined adenomyosis as a “disease of ladies in their 40s” with heavy vaginal bleeding that was not easily controlled with medication.

“But that’s not true at all,” he said. “That’s a myth, mainly because we didn’t have tools to diagnose it.”

He said high quality MRIs were now detecting the condition in much younger women, and that around a third of the women he saw with endometriosis had some adenomyosis.

“Adenomyosis and endometriosis are different diseases, but there are similarities – people can present with heavy periods, agonizing pain often with periods but it can be throughout the menstrual cycle.”

Dee Montague-Coast, from the charity Fair Treatment for the Women of Wales – which chairs the women’s health Wales coalition – said there were more than 158,000 people living with adenomyosis in Wales.

“Yet in our experience, people won’t have heard of it before,” she said. “Often their healthcare professionals haven’t heard of it either.”

She explained that adenomyosis was only recently included on the NHS 111 website, following 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 had improved but there was 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.

“At the same time, 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 – conditions that can have a severe impact on quality of life.

“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 was “one of the eight priority areas in the Women’s Health Plan for Wales which outlines how we are determined to improve women’s health services and women’s experience of those services”.

“Funding of £3m is being used to deliver the actions in the plan, with a specific focus on establishing a Women’s Health Hub in every health board by March 2026, as well as supporting timely diagnosis and management of conditions including adenomyosis.”

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