'Adenomyosis may be invisible, its impact is not'

At least one in 10 women live with adenomyosis, a womb condition which can cause heavy, painful and irregular periods with one sufferer saying her pain got so bad it she felt like she had a "chainsaw" inside her.

Mathilde Barker, a content creator from Surrey who has both adenomyosis and endometriosis, said: "When I was at my worst, it genuinely felt like I had a mass in my uterus, and that it was dragging behind me."

Adenomyosis is a condition where the lining of the uterus begins to grow into the muscle of the womb.

A spokesperson from the Department for Health and Social Care told the BBC: "It is deeply concerning that so many women feel dismissed when they come forward with pain."

Warning: This article discusses distressing themes

Adenomyosis shares a lot of symptoms with endometriosis, but the two conditions are different.

With endometriosis, the cells grow outside the womb, and can appear in other parts of the body, whereas with adenomyosis they only grow inside the womb.

Barker has over 500,000 followers across her Tik Tok and Instagram and said very quickly her audience "became these people with these symptoms".

The 22-year-old was diagnosed with endometriosis aged 19, following laparoscopic (keyhole) surgery, and adenomyosis two years later.

Life with the condition is frustrating for lots of women.

Lauren Buckland, 36, said she gets regular random "stabbing" pains in her uterus, lower back, hip and pelvis.

She said: "[Once] I was walking home from work, and I was in tears of pain and I didn't know what it was.

"This is my body and it's not working how I'd like it to work, but I've got to work with it.

"It's a bit frustrating, but it's just being a woman, isn't it?" she said.

Emma Blackburn, from Broadstairs in Kent says she is in constant pain.

She said: "All of a sudden it'll be what I can only describe as sort of like a labour pain... it'll just shoot into my pelvis."

Blackburn has adenomyosis, endometriosis and fibromyalgia and said she plans her life around her menstrual cycle.

"I pass clots every single cycle, ranging from anything like a 5p to a 50p," she said.

The 34-year-old says she wishes more people were better educated on women's health conditions, "especially the impact that it has on both our physical and mental health".

Lesley Salem, founder of the workplace training organisation Over the Bloody Moon, said: "We want to make sure that hormonal health and menstrual health isn't a barrier."

She says there is a lack of awareness around menstrual health conditions and making changes stem from education.

Salem acknowledged there is still a stigma in the workplace which causes many women, especially those early on in their careers, to feel fear around sharing their struggles.

Experts agree more education and research is needed.

Dr Rebecca Mallick, a consultant gynaecologist at University Hospitals Sussex, said: "It all starts with education on all levels."

She said people should be discussing menstruation from an early age so it's common knowledge that "periods which stop your day-to-day functioning" are not normal.

Historically, adenomyosis has been a condition which is hard to diagnose, as a hysterectomy was the only way to properly analyse the womb.

It is also not always picked up on scans.

Research is taking place to try and change this.

Dr Marianne Watters is a clinical researcher, with Wellbeing of Women, exploring whether adenomyosis can be identified via blood samples.

She says in the future women may be able to identify the condition themselves via an at-home testing kit.

"I hope that in the future we'll be able to improve on the ways that we currently diagnose," she says.

"It is really surprising that we don't know more about this condition and that it's not more openly talked about in the public."

Zara Dedman, 38, from Kent, says being "fobbed off" by doctors has had a huge impact on her mental health.

"Each day, every month, I am having those depressive thoughts, I am having those anxieties around everything", she explained.

She said she found herself having to explain the condition to the medical professionals she had gone to for help.

"When I've gone to appointments consultants, doctors, nurses have asked 'what does that mean?', 'What is that?'.

"I'm then having to educate them on what adenomyosis is", Dedman said.

Lillie Bleasdale, a running coach and content creator from Maidenhead, said she found herself having to advocate for her health to get a diagnosis.

She told me that doctors said: "maybe it's in your head."

A spokesperson from the Department for Health and Social Care told the BBC: "Heavy and painful periods are too often normalised, despite being recognised as one of the early warning signs of gynaecological conditions such as adenomyosis.

Bleasdale says she now uses her social media platforms to help other women learn and advocate for themselves.

She said receiving a diagnosis was "the most relieving part of the process."

'We don't feel heard about'

Endometriosis UK data, from 2025, showed that 580,000 women in England were on the non-cancerous gynaecology waiting list.

Eleni Moutesidi, from Romford, has been diagnosed with adenomyosis, endometriosis and polycystic ovary syndrome (PCOS) and has had 11 surgeries for her gynaecological conditions, including a hysterectomy where her entire womb was removed.

She says she still lives in constant pain, is always exhausted and barely leaves the house.

"I don't have the strength to keep fighting anymore," she told her family.

"We don't feel heard about.

"Adenomyosis might be invisible, but its impact is not."

Her advice to medical staff is: "Trust them when they tell you 'I am in pain'."

If you have been affected by the issues raised in this story, information and support can be found via the BBC's Action Line website.