Why Waiting 7 Years for an Endometriosis Diagnosis Is Unacceptable

When a doctor told me it could take up to seven years to be diagnosed with endometriosis, I didn’t know whether to laugh or cry. Seven years? His excuse? “Because doctors are rubbish.”

Seven years of pain. Seven years of gaslighting. Seven years of not knowing what was wrong with my own body, all “because doctors are rubbish.”

Home alone at university, terrified and unheard. I was barely 21 when I first spoke up about the stabbing pain in my pelvis, pain so severe it made me vomit and pass out. Yet, according to that doctor, I wouldn’t get a diagnosis until I was 28.

I barely knew what endometriosis was, but as he described the symptoms, it all made sense. The crushing fatigue every month. The periods that forced me to disappear from work and friends. The helplessness.

Like thousands of women across the UK, I was dismissed. Told it was normal. Given painkillers. Told it might be stress or bad luck.

That phone call ended, and I was left to suffer alone.

But this isn’t just my story.

A System Failing Women

According to Endometriosis UK, women in the UK now wait an average of eight years and ten months, to be diagnosed with endometriosis. This wait time has worsened since 2020, with Wales seeing delays close to ten years, and Scotland’s average diagnosis time increasing by four months.

This isn’t just a delay; it’s a crisis. During these lost years, the condition silently spreads, causing irreversible organ damage, disrupting fertility, and eroding mental health and quality of life.

Endometriosis affects around 1.5 million women in the UK, about one in ten of reproductive age. Yet, an estimated 60% of cases remain undiagnosed.

A survey of 4,371 diagnosed women reveals a shocking reality:

• 74% visited their GP five or more times before diagnosis.

• Nearly half (47%) had ten or more GP appointments.

• Over half had to visit A&E at least once.

• Only 10% were suspected of having endometriosis early on.

  
  

Emma Cox, CEO of Endometriosis UK, said: 

“Taking almost nine years to get a diagnosis of endometriosis is unacceptable.”

Cox continued: 

“Our finding that it now takes even longer to get a diagnosis of endometriosis must be a wake-up call to decision-makers to stop minimising or ignoring the significant impact endometriosis can have on both physical and mental health.”

This isn’t just a slow diagnosis, it’s a system that actively harms women by normalising delay and dismissing pain. It failed millions. It’s failing me.

Hearing this reality during a routine doctor’s appointment was chilling. What will nearly a decade of waiting mean for my future? For my fertility? For my quality of life, if no one intervenes?

How much damage will be done before someone takes me seriously?

"Everyone Has Period Pain"

Maisie Scott and Sophie Maher were told their pain was imaginary, dramatic, or something they’d simply “grow out of.” Like so many girls and women, they were gaslit from the moment they asked for help.

Sophie Maher, 24, was travelling in Australia when a doctor finally named what she was going through: endometriosis. Maher said:

“I was passing out from the pain, most days I couldn't walk. It's indescribable."

But once back in the UK, her GP “shut [her] down” and told her she would “grow out of it.” She was referred to a gynaecologist, and waited a year and a half for an appointment. Maher continued:

“I turned up at the appointment and they said the appointment didn't exist, so I had to wait another two months.”

Sophie is still waiting for her results. She still doesn’t have a diagnosis.

Maisie Scott started visiting doctors at 16, desperate for answers about her chronic abdominal pain. As a teenager, she was told it was “normal,” even accused of “making it up to get out of her GCSE exams.”

Now 24, she has finally had surgery. What was meant to be a 45-minute diagnostic procedure became a three-hour operation. Scott said:

“My right ovary, my right kidney, my bladder on my right side, my womb, and cervix were all attached as one organ from the endometriosis,” she said.

This is what happens when women are dismissed. When teenagers are shamed instead of helped. When no one listens until the damage is already done.

My own experience echoed theirs. I was given strong painkillers. Then silence.

Dr Kate Dyerson, a GP in Berkshire, highlighted the deeper issue:

“Endometriosis is not bad period pain, it's a level up. It needs understanding.”

But the medical system hasn’t caught up. Endometriosis can only be definitively diagnosed via laparoscopy, an invasive procedure often reserved for last resorts. Even then, many women face lengthy delays for treatment post-diagnosis.

What Is Endometriosis, and How Do I Know If I Have It?

Endometriosis isn’t “just period pain.” It’s a chronic, often debilitating condition where tissue similar to the lining of the womb grows in places it shouldn’t, like the ovaries, fallopian tubes, pelvic lining, and even, in rare cases, the chest.

Each month, this tissue behaves as it would in the womb: it builds up, breaks down, and bleeds. But there’s nowhere for the blood to go. The result? Inflammation. Scarring. Organs sticking together. Excruciating pain.

You Might Have Endometriosis if you Experience:

• Severe period pain that stops you from living normally.

• Heavy bleeding, changing pads or tampons every hour, or bleeding through your clothes.

• Pain during or after sex.

• Pain when you go to the toilet.

• Chronic lower tummy or back pain.

• Extreme fatigue.

• Difficulty getting pregnant.

• Low mood or anxiety tied to your cycle.

  
  

In rare cases, it can affect the chest, causing pain, shortness of breath, or coughing up blood.

Endometriosis can start with your very first period and continue until menopause. It affects anyone who menstruates.

Newer Research is Offering Hope

• Blood and stool tests under development could allow for less invasive, earlier detection.

• Promising findings suggest certain bacterial metabolites may one day form the basis for a non-invasive diagnostic test.

• In March 2025, NHS England finally approved a new pill for endometriosis, designed for those who’ve exhausted all other medical treatments and surgery.

  
  

But despite this step forward, the Department of Health and Social Care admits far too many women are still stuck facing “unacceptable waits” for gynaecology care. They acknowledged:

“We know more must be done to support women with endometriosis. The government is overhauling women’s healthcare to deliver the support women need, exactly when they need it.”

An extra £26 billion is being poured into the NHS, with the promise of cutting waiting times from a staggering 18 months to no more than 18 weeks. But promises alone won’t fix years of neglect.

These advances must be matched by investment, education, and cultural change. Because the problem isn’t just lack of tools, it’s lack of belief.

We Need to Stop Normalising the Wait

We need:

• GP training to improve recognition and referral.

• National campaigns to raise awareness among women and girls.

• Faster diagnostic pathways with investment in gynaecological care.

• Better communication that validates women’s experiences.

  
  

As Ranee Thakar, president of the Royal College of Obstetricians and Gynaecologists, said: 

“We need clinicians across the health service who listen to women and have the skills and expertise to diagnose and treat gynaecological conditions.”

We’re told to get on with it. To manage. To take the pill. To come back later. But nearly nine years is not just a delay. It’s a dismissal. And it's costing women their health, careers, and futures.

Enough Is Enough

For me, the next seven years won’t be about building a career or enjoying my twenties. They’ll be spent in waiting rooms. Cancelling plans. Working through unbearable pain. Planning life around a cycle I can’t control.

I won’t be thriving, I’ll be surviving.

Endometriosis isn’t rare. It isn’t invisible. But it is being ignored, over and over again.

This isn’t just a personal tragedy. It’s a systemic failure. And we’re done being silent about it.

It’s time to stop normalising this pain. It’s time to demand better.