At 17, Maya thought severe period pain was something she had to put up with.

By 22, she had fainted at work during her cycle. By her mid-twenties, she had seen several GPs, tried different medications, and undergone multiple scans. Each appointment ruled out something serious, but the underlying problem remained unclear.

She was 27 by the time she was diagnosed with endometriosis — nearly ten years after her symptoms first appeared.

For many women, this is how the experience unfolds. The symptoms are there early, but the answers take time.

Endometriosis affects an estimated 1 in 7 Australian women by the age of 49, and it affects around 190 million women globally, according to the Australian Institute of Health and Welfare and the World Health Organisation. Diagnosis still takes years, typically six to eight years in Australia, and often longer elsewhere.

Research indicates that up to 65% of women with endometriosis initially receive an incorrect diagnosis, making connected care pathways essential.

Awareness has improved over time. That part isn’t the issue anymore.

What hasn’t shifted as much is how patients move through the system.

This reflects a broader pattern seen across women’s health and primary care, where fragmented pathways continue to affect how conditions are recognised and managed.

What is endometriosis?

Endometriosis is a chronic condition where tissue similar to the lining of the uterus grows outside the uterus. It most often affects the ovaries, fallopian tubes, and pelvic lining, although it can extend beyond that.

Symptoms don’t always present neatly:

• ongoing pelvic pain

• severe menstrual pain

• pain during intercourse

• heavy or irregular bleeding

• fatigue

• fertility challenges

Some women notice symptoms early on. Others describe a gradual shift — things getting worse or just harder to ignore.

The difficulty is that none of these symptoms point clearly in one direction. They overlap with conditions like irritable bowel syndrome or pelvic inflammatory disease. Imaging may or may not show anything useful. And often, confirmation still relies on laparoscopy.

Even when endometriosis is suspected, getting to a firm diagnosis can take time.

Why diagnosis is delayed

Some of the delay starts with how symptoms are framed early on. Severe menstrual pain is still, in many cases, brushed off as expected. For younger patients especially, that framing can linger longer than it should.

Clinical pathways also play a part. Because surgery is required for confirmation, initial management tends to focus on symptom control. That’s reasonable, but it does extend the process of diagnosis and treatment, potentially delaying timely interventions that could improve patient outcomes.

Then there’s the structure around care itself.

Many women move between providers over several years: GPs, gynaecologists, imaging services, pain specialists, physiotherapists, and sometimes fertility clinics. Each consultation adds something useful. The problem is that those pieces don’t always come together.

Patients often end up repeating their history at each visit. Investigations are sometimes duplicated. Small details become lost between referrals.

When care is spread across multiple providers with no shared record, the patient often becomes the only thread connecting the whole story.

Some studies suggest that a large proportion of women with endometriosis receive a different diagnosis earlier in their journey, which can further complicate the path forward, as highlighted by Endometriosis Australia.

Where the system falls short

On paper, the pathway looks logical. In practice, it can feel scattered.

Results live in different systems. Referrals arrive with limited context. What’s already been tried—or ruled out—isn’t always obvious to the next clinician in line.

Over time, many patients start holding that picture together themselves. They keep track of symptoms, manage appointments, and try to piece together what’s happening across providers.

It works, to a point. But it also points to the gaps.

Without a shared view of the patient’s history, recognising patterns gets slower than it needs to. What could come together earlier, such as timely sharing of patient information and collaborative decision-making among healthcare providers, ends up taking years.

Why coordination matters

Improving diagnosis isn’t only about better tests or faster access. It’s also about continuity — how well information carries from one setting to the next.

When clinicians can see what’s already happened—previous investigations, symptom progression, earlier decisions—the conversation changes. Less time is spent retracing steps. More time goes into figuring out what’s still missing.

In a more connected setup:

• Histories carry forward rather than restarting.

• existing results are easier to access and interpret

• Referrals happen with more context.

• Follow-up is less likely to fall away.

None of this is particularly complex. But it does require the system to behave somewhat differently than it often does now.

Supporting more connected care

None of these changes are complex on their own. The challenge is making them work in practice.

In most settings, information still sits in different places. Referrals move, but the context doesn’t always move with them. What one clinician knows doesn’t automatically carry through to the next.

That’s where things start to slow down.

As a response, more structured approaches to clinician engagement and education are being explored, including programmes designed to improve coordination across care settings.

There’s been a gradual shift towards tools that make this easier—not by changing clinical decisions but by improving how information is shared. In practical terms, that means clearer referral pathways, better visibility of previous investigations, and less reliance on patients to fill in the gaps.

For conditions like endometriosis, where care often stretches across multiple providers over time, that continuity makes a difference. It reduces the need to start from the beginning at each step.

It doesn’t solve the complexity of the condition, which includes various symptoms and treatment options that can differ significantly among patients. But it does lessen the emotional burden and confusion that often accompany the diagnostic process.

Beyond diagnosis

By the time many women receive a diagnosis, they’ve already been living with symptoms for years — often without a clear explanation.

That time doesn’t sit in the background. It affects how people move through work, study, and relationships, leading to increased stress and potential disruptions in their daily lives. Plans are adjusted. Some things are put off. Others are quietly worked around.

Pain and fatigue tend to become part of the routine, even when they shouldn’t be.

Getting a diagnosis doesn’t undo that time. But it does change what happens next—there's finally a direction, something to work from, rather than continuing in uncertainty.

Looking ahead

There’s more attention on women’s health now than there has been in the past, and that’s starting to show. Awareness is better. Conversations are happening earlier.

Even so, progress depends on how well different parts of the system connect, such as the collaboration between healthcare providers, patients, and support services.

Clinicians tend to make more contextual decisions when they have access to more comprehensive information. Patterns are easier to identify. The pathway becomes somewhat clearer.

For patients, that can mean reaching a diagnosis sooner and spending less time in the unknown.

A final thought

Improving diagnosis timelines in endometriosis isn’t about one breakthrough or one change. It’s about a series of small improvements — in how symptoms are taken seriously, how information is shared, and how care is coordinated.

For healthcare providers looking to better understand and engage with these challenges, exploring broader resources, insights, and structured programmes can be a useful place to start.

RxTro supports more connected care across Australia — find out more →