“I Lost a Decade of My Life to a Gynaecological Condition I’d Never Even Heard of – and 1 in 10 of You Could Be Going Through the Same”

Close your eyes and imagine a belt cinched tight around your lower waist. Then, picture bricks hanging from said belt. A deep ache radiates into your back and thighs, a weight that doesn’t lift whether you stand, sit, lie down, or sink into a bath so hot it borders on blistering. Add the unpredictability: one moment a dull throb, the next a pain sharp enough to steal your breath.

This is a “normal” day with adenomyosis, layered with relentless fatigue and bleeding so heavy it dictates everything from what you wear to whether you dare leave the house.

While it may sound extreme, it's sadly the quiet reality for many women, made more alarming by the recent data, which revealed that 77% of the public have never even heard of adenomyosis. We were taught from day one that periods are meant to hurt - and that belief is precisely why this condition remains so widely misunderstood.

Adenomyosis lives in a strange, infuriating grey area: common enough to affect one in ten women, yet invisible enough that most of us go years without hearing its name. I certainly did.

And I’m far from alone. Recent studies show it overlaps with endometriosis in about one third of cases, a silent reminder that so many women are suffering in plain sight, their pain routinely normalised.

For decades, adenomyosis was thought to affect only women in their later reproductive years, largely because diagnosis relied on a hysterectomy. But advances in imaging are rewriting this story for us, with more recent research showing that Adenomyosis can appear much earlier than we once thought.

A formal diagnosis can take years, and after more than a decade, I now understand that being an advocate for your own health is often the only real control any of us has. You can’t fast-track waiting lists, shortcut referrals, or decide when a doctor finally says, "I think I know what’s wrong." You can’t control how often women are told their pain is "just a bad period," or how easily conditions like this slip through the cracks. But spoiler: the one thing you can control is never refusing to stop questioning - even when you’re tired, anxious, and quietly wondering if you’re the problem.

I am one in 10. And as I sit here, I can’t help but wonder how many women are still suffering simply because they don’t yet have the language - or the insight - to name their pain. For more expert information on what exactly adenomyosis is, how the condition so many of us are living with impacts the body, and why it's so unheard of, keep scrolling. And don't miss our science-backed guides to the common endometriosis symptoms, how to get an endometriosis diagnosis, or how to adjust to living with endometriosis, while you're here.

Adenomyosis is the common health condition impacting one in ten women - yet 77% of Brits have never heard of it. Your guide

What is adenomyosis?

Imagine your uterus as a perfectly organised apartment. Now imagine the wallpaper deciding it wants to move into the walls themselves, turning your living space into a construction zone. That’s adenomyosis.

As Dr Raj Arora, women’s health expert and GP, explains, “Adenomyosis occurs when the tissue that normally lines the uterus grows into the muscular wall of the uterus, causing it to become swollen, inflamed, and painfully sensitive.”

Endometriosis, on the other hand? Same wallpaper, just sneaking into the neighbours’ flat and throwing chaos there too - making periods a full-blown evacuation.

So yes, same tissue, different location, different mechanisms - but both somehow turn every day into a high‑stakes negotiation with your own body.

Why are younger women suddenly being diagnosed with adenomyosis?

Finding out I had adenomyosis at 22 felt like another punch in the uterus (quite literally) - another medical plot twist I hadn’t asked for, and proof that my pain wasn’t "just in my head."

And many young women like me are only just starting to get answers, as Dr Faye Bate, women’s health doctor, explains, “For a long time, most cases were identified in women in their 40s and 50s, largely because the condition was typically confirmed after a hysterectomy - in other words, doctors would only discover adenomyosis when examining the uterine tissue post-surgery. Naturally, that meant diagnoses skewed towards older women who were done having children or needed surgery for other reasons.

She adds that high-resolution ultrasounds and MRIs are now doing the heavy lifting, spotting adenomyosis without surgery and giving women in their twenties and thirties answers they never had before. “Add to that a cultural shift away from the old ‘grit your teeth and bear it’ approach, and younger women are finally being taken seriously."

It’s progress worth celebrating: with studies showing that early diagnosis can protect fertility, improve quality of life, and spare years of unnecessary suffering. But it also raises a rather sobering question: how many women before us endured all this simply because no one had the tools… or the curiosity… to look?

What are the main symptoms of adenomyosis?

We’ve normalised talking about periods like they’re supposed to hurt, and when pain becomes part of the vocabulary, it stops sounding like a warning. That’s one of the biggest problems with adenomyosis, says Dr Faye. “The two major symptoms are heavy menstrual bleeding and painful periods. Society tends to tell us from a young age that periods are supposed to be miserable, so we end up assuming even extreme symptoms are normal. But there’s a point where it’s not normal - and it’s crucial to recognise that line.”

​That normalised language doesn’t just shape how we talk about periods, it shapes what we ignore. According to Dr Faye, many of the key red flags of adenomyosis are symptoms we’ve been taught to dismiss - pain and periods, a packaged duo. Heavy bleeding is a prime example here. No one really teaches us what ‘too heavy’ actually looks like. So, here are the red flags to watch for:

• Soaking through a pad or tampon every one to two hours, especially for several hours straight
• Needing to use two types of protection at once, because one isn’t enough
• Passing large clots, bigger than a 10p coin
• Periods lasting longer than seven days
• Bleeding or pain so severe that it keeps you from work, school, or social activities.

Readers, nothing about extreme pain is normal, yet this is another symptom that often gets normalised. Some cramping is expected, yes - but pain that stops you from living your life, leaving you curled up in a ball for hours, vomiting, or fainting, gosh, that is far beyond “normal”.

How to Advocate for Yourself When No One Else Does

Advocating for yourself often begins long before a diagnosis ever arrives. According to Dr Raj, “It can look like asking for a second opinion when you feel dismissed, or requesting a GP with a women’s health interest - something most surgeries will quietly have, if you know to ask. It can mean keeping a pain diary, not just to validate your experience, but to give shape and pattern to symptoms.”

And it can mean leaning on community: charities, helplines, symptom checkers - places where women’s pain is spoken fluently.

This conversation doesn't end in despair - there's real hope here. As more of us open up, we’re becoming remarkably good at finding one another. We share. We compare notes. We scream and shout about our bodies and our pain. Learning the language of our pain is powerful, and education is key. Context gives pain credibility, and knowledge gives it direction. When we can name what’s happening in our bodies, we are a hell of a lot harder to dismiss, easier to help, and better equipped to demand care that meets us where we are.

"The people who live with these conditions know the most, because this is our life.”

For Lillie Bleasdale, a marathon runner, Head Coach and Founder of female running collective Passa, the long wait for answers wasn’t just exhausting; it quietly reshaped her life.

Lillie didn’t know she had adenomyosis until she was 25 years old. Between the ages of thirteen and eighteen, her life became a cycle of GP appointments, pill hopping, and trying to “control” her periods. No one questioned why she was in pain; the focus was always on symptom management.

The signs were clear: a constant heaviness in her lower back, hips, and pelvis, shooting pains down her inner thighs, and periods so heavy she needed three pads, a super-maxi tampon, and a towel to get through the day - and was still told this was “normal”.

As a teenager, the only solution she was offered was another pill. The progesterone-only pill helped physically, but came with severe mental health side effects - something she still questions to this day. “It makes me wonder,” she says, “everything they give to help - is it actually making us sicker?”

One appointment still stands out for her, "I went to the doctor to change my pill because it wasn’t working, and instead I was told, ‘You shouldn’t be on contraception anyway, it’s not what God would want.”

Over time, the pain stopped being something she could compartmentalise. She describes feeling unwell in her entire body: sex was painful, and bleeding after became a common occurrence. Living inside that level of discomfort made a traditional 9-5 seem impossible to maintain, eventually pushing her to leave altogether.

"Sometimes I’d just sit there and feel unwell - it’s a feeling you can’t quite describe; it wasn't just physical pain, it’s every part of you. It just hurts. It’s completely and utterly consuming.”

It took twelve years for Lillie to receive a diagnosis. She was referred through the NHS, but after long wait times, she chose to go private, where she was finally diagnosed with both endometriosis and adenomyosis.

"The real issue is that the typical approach is basically symptom management - no one is asking why they’re happening, or where anything stems from. There’s zero investigation until you scream for it. And by the time women get proper treatment, they’re already totally ruined by it. Mental Health. Gone. Our faith in the system. Non-existing.”

To this day, she’s still waiting to hear back from that original referral. On paper, she’s just another number on an ever-growing list.

"The people who live with these conditions know the most, because this is our life. I wish I’d been given the education earlier - to trust myself and advocate sooner.”

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