'Adenomyosis may be invisible, its impact is not'

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."

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.

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