It starts with pain … the kind that stops you in your tracks.
Pain that comes and goes, shifts and escalates. Some describe a sharp, twisting sensation. Others say it feels like being burned from the inside out.
Told it’s normal, or something else entirely, you learn to live around it, reshaping your days, your plans, and eventually, your expectations around something you don’t yet understand.
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And it doesn’t always look the way you expect — symptoms can extend far beyond periods, affecting the bowel, bladder and other parts of the body.
For some, it also means pain with sex and challenges with fertility, impacts that extend well beyond what many people assume is just a menstrual issue.
For many women, the uncertainty can last for years, shaping every part of their lives.
Endometriosis affects one in nine women and girls in Australia, yet getting a diagnosis can take close to a decade.
Data from the Australian Endometriosis Foundation shows young people aged 18 to 35 are waiting an average of seven years from the onset of symptoms to diagnosis, stretching closer to 10 for First Nations women.
And even when they do finally get it, the diagnosis is rarely the end of the story.
Why the delay exists (and why it’s not as simple as ‘do better’)
At the centre of the gap is a problem that isn’t easily solved.
Endometriosis does not present in a single, predictable way, and confirming a diagnosis is far more complex than just ordering a simple blood test.
Associate Professor Rebecca Deans at Endometriosis Australia told 7NEWS.com.au the biggest obstacle is trying to determine what the pain is in the first instance, noting that pelvic pain can point to a wealth of problems outside of the scope of endometriosis.
Pain, in this context, is not a clear signal. It overlaps with multiple conditions, forcing clinicians to work through a long process of elimination.
Further compounding the difficulty is that, unlike many other diseases, there is no simple, low-risk way to confirm endometriosis early.
“We don’t really have a good, low-intervention diagnostic tool … typically the gold standard diagnosis is a laparoscopy,” Deans said.
That means keyhole surgery — where a small camera is inserted into the abdomen to look for endometriosis — is often required to definitively diagnose the condition.
“If you were to do a laparoscopy on every woman who presented with pelvic pain, that wouldn’t be the best medicine either,” Dean said.
This leaves clinicians battling between the risk of missing a diagnosis or intervening too early and putting girls as young as 15 through invasive surgery.
It is within that moral tension that delays occur.
The dangerous grey area where endometriosis grows unbridled
For patients, that complexity often feels like being dismissed — their pain questioned, explained away, or not fully understood.
With almost all women experiencing some kind of pain or discomfort during their period, Deans said the role of a clinician is about working out “how much pain is normal”.
But everyone experiences pain differently, meaning that line is not always easy to draw.
Symptoms do not always point medical professionals in a single direction.
Pelvic pain can mimic gastrointestinal conditions, ovarian cysts, appendicitis, and more, sending patients down long and often frustrating diagnostic pathways.
“Sometimes people go down rabbit holes … investigating bloating and gastrointestinal symptoms and have gastroscopies and colonoscopies,” Deans said.
In acute cases in hospital emergency departments, that overlap becomes even harder to untangle, leading to otherwise unnecessary procedures such as appendectomies and colonoscopies.
All the while, untreated endometriosis continues to grow unbridled, often with worsening symptoms along the way.
When the symptoms don’t fit the box
On average, young people — often first noticing something is wrong as early as 13 years old — will see six different doctors before anyone connects the dots.
For some, the delay begins because their symptoms don’t fit the boxes doctors are trained to look for.
For India, it began with symptoms that simply didn’t fit the mould.
“My endo didn’t fit in the boxes of textbook diagnosis,” she told 7NEWS.com.au.
“I never had painful periods. My periods were my break. The whole month was horrible for me otherwise.”
Each attempt to seek help led to the same response.
“It was the same story from doctors being like, ‘you’re anxious … you need to lose weight … you have PCOS (polycystic ovary syndrome)‘ … and no one ever considered the possibility of endo.”
Looking back, the signs were there but, at just 15 years old, they were easy to dismiss.
“I’d get this really, really sharp, twisting pain that would leave me thinking I was either going to vomit or pass out,” she said.
“But it was so fast that I wouldn’t question it … I was just kind of conditioned to believe that certain pains you just dealt with.”
Over time, that pain escalated and came without warning.
At its most severe, the pain was so intense she said it felt like her body was preparing for birth.
“I was doubled over … I genuinely feel like nothing would feel like this much pressure and this heavy and this painful, except for birth.
“This didn’t happen on my period … it was just this horrific pain.”
India’s experience is not unusual. Many women with endometriosis don’t fit the mould doctors are trained to recognise, and when they don’t, the condition is often overlooked or dismissed altogether.
The hidden cost of being unwell
What follows is a slow but noticeable reshaping of daily life with impacts bleeding into work, relationships, daily routine and identity.
“If people are missing work as a result of their pelvic pain … then that obviously will have an impact on their ability to live,” Deans said.
For India, who works as a midwife, the impact was high stakes.
“It was impacting everything,” she said.
“I got really anxious and scared to go to work because I would be like, what if … I get this pain, and I can’t be there.”
The condition ultimately becomes part of who you are. Over time, decisions begin to shift, and plans are made around pain cycles.
“You might alter your behaviour … that has a lot greater impacts psychologically,” Deans explained.
“Young people with endometriosis miss an average of 3.5 days of work or study per month. Across a diagnostic journey spanning most of a person’s late teens and 20s, that compounds into disrupted education, stalled careers, and real financial strain,” Australian Endometriosis Foundation told 7NEWS.com.au.
All the while, the financial burden of expensive scans, specialist appointments and pain medication continues to grow.
For some, access to timely care depends on whether they can afford to go private.
“I got the surgery instead of waiting a year for it — I could get it within, like, three months,” India said.
“But it’s just … if you have money in this women’s health system, you tend to be a little bit more privileged.”
The result is layered, physical pain, emotional strain and financial pressure, all compounding over time.
The diagnosis that changes everything
After six years of searching for answers, countless inconclusive tests and enduring severe pain — often met with prescriptions for opioids and antidepressants — India finally convinced her gynaecologist to go ahead with surgery.
She was told that, given her symptoms and prior testing, the surgery was unlikely to show anything, but it showed so much more than she could have imagined.
“It was everywhere,” she said.
With that diagnosis came relief and validation.
“I just sobbed. I sobbed for days,” she said.
“I honestly have never felt that much validation.”
Deans said the moment of diagnosis can be “really powerful psychologically”.
But, ultimately, it doesn’t end the condition.
“Just because you have a diagnosis doesn’t mean you’re out of pain,” Deans said.
India’s experience didn’t end with surgery.
While doctors removed the endometriosis, the impact of the condition didn’t simply disappear.
“I think even if you get the diagnosis, you get the surgery, you get it removed … it’s an ongoing battle,” she said.
“So, I am still kind of in this battle … something’s still not quite right.”
Now, she is still trying to understand what is normal and what isn’t.
Awareness is rising, but the gap remains
There is no doubt that awareness of endometriosis has increased over the past few years.
Deans said that awareness has certainly led to more diagnoses as women advocate for themselves but the gap has not yet closed.
India believes that reason is systemic.
“The reason it takes so long is because women are not believed and they’re not taken seriously,” she said.
“And the first thing they’ll be diagnosed with is anxiety … before a literal disease.”
Her experience reflects a broader pattern, where symptoms are dismissed as “normal” before they are fully explained, or women are more readily labelled mentally unwell than physically.
Working inside the medical system herself, she has seen firsthand how the practice follows set step-by-step pathways like a flow sheet, but said that “endometriosis doesn’t fit in that”.
Despite growing awareness, experts say the system has not kept pace.
“We have educated the public faster than the profession,” an AEF spokesperson said, pointing to a gap between what people now understand about the condition and how it is recognised and treated in clinical settings.
Researchers are now working toward less invasive ways to diagnose the condition earlier.
“We really want to develop non-surgical diagnosis,” Deans said, noting MRIs are improving and becoming more effective.
Emerging research is also exploring new approaches, including biomarkers that could help identify endometriosis without surgery.
The goal is simple: reduce the time to diagnosis and improve the quality of life for those suffering from it.
But for now, the gap remains.
For the one in nine women affected, the hardest part is not always the condition itself — it is how long it takes to simply be believed and listened to.
