Tackling endometriosis

I had a friend (name changed) who suffered from horrible endometriosis for years, battling not just the disease itself, but also the social stigma, denial from medical practitioners and the system.

On the outside, Claire looks like the kind of person who “handles things”.

She is competent at work. She answers emails with a calm tone even when her inbox is on fire. She remembers birthdays. She brings a plate to the office morning tea. She smiles at the right moments in meetings. She laughs at the jokes she’s supposed to laugh at. She says, “all good!” more often than she means it.

If you met her in the lift, you would not guess that she has spent part of the morning in the bathroom with her forehead against the cold tiles, waiting for the wave to pass.

It starts the way it often starts – as something you are told to normalise.

At fifteen, Claire’s periods are painful enough that she sometimes misses school. The pain is low and deep, not sharp like a cut but heavy like a stone. It comes with nausea. Sometimes she gets dizzy. Once she vomits behind the sports shed and a friend holds her hair back. She jokes about it because joking is safer than admitting the truth – she is scared.

Her mother says, kindly, “That’s just what it’s like for some girls.” A teacher tells her she should keep Panadol in her bag. An aunt says, “Wait until you’ve had kids, then you’ll know pain.” The message arrives from a hundred directions, not always cruel, often loving – this is normal, you should push through.

So, Claire pushes through.

She learns the choreography of concealment. She learns which black pants hide stains. She learns which bathrooms have the best bins. She learns how to fold a heat pack under her waistband and keep her face still during a class presentation. She learns that you can be in pain and still be polite, that, in fact, you are expected to be both.

When she finally goes to a doctor, she does what women so often do – she translates her pain into language that will not sound hysterical.

She says “cramps”. She says “discomfort”. She says, “it’s affecting my ability to function sometimes” and then watches the doctor’s eyes flick briefly to the screen. She gets asked whether she’s stressed. She gets asked whether school is going okay. She gets asked whether she’s anxious.

She is given the standard advice – anti-inflammatories, the pill, maybe an ultrasound “just to check”. The ultrasound comes back normal. She is told this is reassuring. She should be reassured.

But what Claire hears is something else – if the scan is normal, maybe I’m exaggerating.

This is how the delay begins, not as one dramatic act of medical negligence, but as a long series of small dismissals, misunderstandings, and cultural scripts. A slow erosion of confidence. A quiet training in self-doubt.

In her early twenties, the pain changes shape. It is not only “period pain” anymore.

Sometimes it arrives mid-cycle. Sometimes it arrives after sex. Sometimes it arrives with bowel symptoms that make her feel embarrassed and unclean. There are mornings she wakes up already tired, as if the night did not count as rest. She begins to plan her life around a calendar she does not control – she turns down social events if they fall in the “danger week”, she schedules work presentations away from the days she’s most likely to be flattened, she carries spare underwear like a person preparing for a storm.

At work, she becomes expert at being “fine”.

On the days she can’t be fine, she becomes expert at excuses.

Migraine. Gastro. A “bug”. A “women’s issue” said with a laugh, like it’s trivial. She learns that there are some kinds of suffering that earn sympathy, and other kinds that make people uncomfortable. Pelvic pain belongs to the second category. It is intimate. It is messy. It is difficult to talk about without seeming dramatic. It also sits right on the cultural fault line where women are taught that their bodies are, by default, a little unreliable.

She uses sick leave. Then she uses annual leave. Then she works from bed, laptop propped on a pillow, camera off, answering messages while she waits for the medication to dull the edges.

She doesn’t tell her manager the full truth, partly because she’s private, partly because she has watched what happens to women who disclose chronic illness at work – they become “complicated”. They become someone you have to plan around. They become, in the quiet logic of promotion, a risk.

She starts to wonder whether she is simply weak. Other women seem to cope. Her mother coped. Her colleague’s joke about cramps and get on with it. Why can’t she?

And this is the most corrosive part of diagnostic delay – it doesn’t just cost time. It costs identity. It makes you distrust your own perception of reality.

By the time Claire is twenty-seven, she has been to emergency twice for pain so severe she thought something inside her was rupturing. Both times, she waited for hours under fluorescent lights, clutching her abdomen while trying not to cry in public. Both times, she was eventually told that the tests didn’t show anything immediately life-threatening. Both times, the subtext landed – you are safe, so stop making a fuss.

When she returns to her GP, she is careful again. She doesn’t want to be labelled. She doesn’t want to be “that patient”. She says she is “still having issues” and “would like to explore options.” She tries to sound reasonable, calm, adult. She tries to convince the room that she deserves attention.

Sometimes she succeeds. Sometimes she doesn’t.

This is the paradox – the people most likely to be dismissed are often the people who have learned to speak softly.

What is Endometriosis?

Endometriosis is not rare. It is not a boutique condition. It is not a fashionable diagnosis for anxious women.

Endometriosis is a disease in which tissue similar to the lining of the uterus grows in other parts of the body, often in the pelvic region but sometimes involving structures such as the bowel and bladder. It can cause inflammation, scarring and adhesions, and it can be profoundly painful.

In Australia, estimates suggest around one in nine women are affected.

And yet the average delay between symptom onset and diagnosis is still commonly described as six to eight years.

In one Australian study cited by the AIHW, that delay was made up of roughly three years from symptoms to seeking care and five more years from first appointment to surgical diagnosis.

Think about what that means in human terms.

Six to eight years is a whole degree. It’s a relationship. It’s the early stage of a career. It’s the window when many people are deciding whether to have children, buying a home, building stability. It’s also, very often, the period in which pain reshapes a person’s life while they are repeatedly told, in subtle ways, that the pain is not quite real.

Claire doesn’t need a statistic to tell her that. She has lived it.

“But your scan is normal” – the tyranny of what we can see

Part of the problem is medical. Endometriosis can be hard to diagnose. Symptoms vary. They overlap with other conditions. There is no simple biomarker test.

And historically, the “gold standard” for definitive diagnosis has been laparoscopy, surgery with biopsy. That creates its own barrier – you may have to convince multiple clinicians that you are “bad enough” to justify surgery, and then you may wait for specialist access.

But there is another problem that is cultural, and it is harder to name because it hides inside normality.

We have a long habit, in medicine and in society, of treating women’s pain as either exaggerated or expected. When pain is tied to menstruation, it is especially easy to dismiss. If half the population bleeds monthly, we tell ourselves, surely it can’t be that serious. Surely it’s just part of life.

The trouble is that “part of life” can still be a serious health problem.

There is growing research and commentary documenting how women’s pain is more likely to be discounted, minimised, psychologised, or treated as an overreaction.

More than 4 in 5 reported not being listened to, and many described symptoms being dismissed.

Australia is not immune to this pattern. The symptoms are familiar – “Have you tried relaxing?” “It’s probably stress.” “Your tests look fine.” “Some women just have bad periods.” “You’ll feel better after pregnancy.” (A sentence that manages to medicalise a woman’s body while also turning her into a future vessel.)

For Claire, each version of that message lands in the same place – you’re not credible enough for the system to rearrange itself around your suffering.

There’s a strange moral economy in healthcare.

If you are stoic, you might be ignored because you don’t look sick enough. If you are distressed, you might be dismissed because you look too emotional. If you are knowledgeable, you might be labelled difficult. If you are uncertain, you might be patronised. Women, in particular, are trained to walk a narrow path – advocate for yourself, but don’t be demanding, describe your pain, but don’t be dramatic, insist on help, but don’t make anyone uncomfortable.

Claire becomes a master of this balancing act.

She arrives at appointments with notes in her phone – dates, symptoms, how many hours she missed at work, what made it worse. She tries to be efficient because she can see the time pressure in the room. She’s aware that a GP appointment is short and that every minute counts. She tries to compress her reality into bullet points.

She does not always succeed.

Sometimes the pain is hard to describe. It has too many textures. Sometimes it moves. Sometimes it is a fog more than a knife. Sometimes it is the exhaustion that matters most, the way pain drains everything else.

But modern medicine is better at measuring the knife than the fog.

So, Claire focuses on the knife. She chooses the parts that sound medical. She edits out the parts that sound like feelings.

That editing is itself a cost.

The turning point is simply a clinician doing what good clinicians do – listening.

Claire sees a GP who asks one extra question – “How long has this been going on?”

When Claire answers, “since high school”, the GP doesn’t nod and move on. She pauses. She says, “That’s a long time to be living like this.”

That sentence is the first relief Claire has felt in years.

The GP explains, carefully, that severe period pain that disrupts life is not something a person should have to endure without investigation. She talks about endometriosis as a possibility. Not as a trendy label, not as a certainty, but as a plausible explanation that deserves to be taken seriously.

She organises a longer appointment. She makes a plan. She refers Claire to a specialist.

For the first time, Claire is not alone in the work of making her pain legible.

When the diagnosis finally comes, after specialist review, after further investigations, after a laparoscopy that finds lesions where they shouldn’t be, Claire feels something close to grief.

Not because she is glad to have a chronic condition, but because she can now see, in retrospect, what those lost years were – years spent doubting herself.

She cries in the car afterwards, not with despair but with rage. Rage that it took so long. Rage that she had to become her own case manager. Rage that she had to perform credibility to earn care.

Then she calls her mother.

“I wasn’t imagining it,” she says.

And her mother, who has carried her own scripts about pain and womanhood, says quietly – “I’m sorry, love. I didn’t know.”

There is a tendency, in public debate, to treat conditions like endometriosis as private misfortunes rather than public issues. That is part of why they remain under-resourced – the suffering is dispersed across households, workplaces, relationships, and inner lives, not concentrated in a single visible crisis.

But the costs are not small.

The AIHW reports that an estimated $247.2 million was spent on endometriosis in the Australian health system in 2020–21, with the majority attributed to hospitals.

And Australian research has estimated the overall cost of endometriosis at $30,900 per person, with the vast majority driven by lost productivity.

Lost productivity is not laziness. It is pain. It is fatigue. It is medication that makes you foggy. It is the day you cancel a meeting because you can’t sit upright. It is the job you don’t apply for because you can’t risk a probation period with unpredictable symptoms. It is the unpaid labour of partners who pick up the slack at home. It is the slow narrowing of ambition when your body keeps betraying you.

Claire is not asking for pity. She is asking for a system that does not demand she waste a decade proving she deserves care.

“Just bad periods” is not a diagnosis.

It’s what we say when we don’t want to talk about menstruation. It’s what we say when we don’t want to acknowledge that women’s health has been historically under-researched and under-prioritised. It’s what we say when we confuse commonness with triviality.

Menstrual pain is common. That does not mean it is benign.

And endometriosis is not only a “women’s issue” in the narrow sense – health authorities explicitly recognise that it can affect women and girls as well as transgender, non-binary, and gender-diverse people assigned female at birth. Even our language sometimes lags behind the reality of who is living with this disease, which matters, because language shapes whether people feel safe seeking care.

When we reduce it to “bad periods”, we shrink a multi-system disease into a punchline. We teach teenagers to endure what they should question. We train clinicians, unconsciously, to underestimate what they should investigate.

And we build a pipeline of delay.

Australia has not been entirely asleep at the wheel. The very fact that endometriosis is increasingly discussed in public is itself progress.

There is a National Action Plan for Endometriosis, launched in 2018, aimed at improving awareness and education, clinical management and care, and research. That plan explicitly frames endometriosis as a significant health burden and calls for coordinated strategies to improve quality of life and reduce impact.

There have also been concrete initiatives in recent years. A 2024 government progress report describes funding for specialised Endometriosis and Pelvic Pain GP clinics across Australia and work on primary-care management planning.

And from 1 July 2025, new Medicare Benefits Schedule items were introduced to support longer specialist gynaecology consultations (45 minutes or more) for complex conditions such as endometriosis and pelvic pain, a recognition that you cannot responsibly assess these conditions in the time it takes to reorder a coffee.

These are the kinds of structural changes that matter, because so much of the delay is about a system that is rushed, fragmented, and set up to privilege problems that are quick to see and simple to fix.

Endometriosis is neither.

If we take Claire’s story seriously, not as an isolated tragedy, but as a predictable outcome of our current arrangements, then the response has to be bigger than telling women to “advocate for themselves”.

Yes, self-advocacy helps. But a just system doesn’t make suffering people do all the work of being believed.

Practical Measures

This response would require us to:

1 – Treat severe menstrual and pelvic pain as a legitimate health issue from adolescence onward. Not with panic, not with over-medicalisation, but with a cultural baseline that says – if pain disrupts life, it warrants attention.

2 – Fund time in primary care and specialist care, because listening takes time. The new long consultation items are an important signal – complex gynaecological conditions require assessment that is not rushed.

3 – Build clear referral pathways and local centres of collaborative care. Clinicians themselves have pointed to the value of pragmatic guidelines, education, and access to local centres for collaborative care, because endometriosis sits at the intersection of pain management, gynaecology, fertility, mental health, and sometimes gastrointestinal and urological systems.

4 – Make workplace support normal, not exceptional. Endometriosis is a chronic condition. That doesn’t mean every employer must become a clinic. It means flexibility that is real – options for remote work when pain flares, reasonable leave practices, and an end to the quiet penalty that falls on people with bodies that are not perfectly predictable.

5 – Keep investing in research, data, and public education. We cannot diagnose quickly what we do not understand well, and we cannot treat effectively what we have historically under-funded. The Action Plan’s emphasis on awareness, care standards, and research is the right architecture, it needs sustained political will behind it.

None of this requires us to invent a new ethic. It requires us to apply an old one – that people in pain deserve to be taken seriously, even when that pain is familiar, gendered, and inconvenient.

When Claire tells her story now, she doesn’t begin with the surgery. She begins with the sentence that changed everything –
“That’s a long time to be living like this.”

Because the most radical thing medicine can do, sometimes, is not a new drug or a new device. It is a shift in what it recognises as real.

Claire is still living with endometriosis. A diagnosis is not a magic wand. There are treatments, management plans, trade-offs, ongoing care. There are good months and bad months. There is still the work of living in a body that can surprise you.

But she is no longer living in the additional pain of being dismissed.

And if we want fewer women to spend their twenties, and sometimes their teens, in that particular kind of limbo, we need to stop calling it “just bad periods”.

We need to call it what it is – a public issue hiding in private suffering.