For many people, the endometriosis journey starts the same way: years of pain, a growing list of symptoms and a quiet fear that this might just be your “normal”. Then comes the carousel, GP visits, scans, referrals and long waits, often with no clear plan and no one joining the dots.
Even when a diagnosis finally lands, the support often does not. Patients get sent from provider to provider, repeating their story, paying out of pocket and trying to make sense of conflicting advice. The condition is chronic, but the care remains episodic.
Chief Executive Officer at QENDO, the national service and program provider and 2026 Queensland award recipient of Women and Leadership Australia’s Australian Awards for Excellence in Women’s Leadership Jess Taylor says the system design has not caught up with the reality of living with endometriosis.
The most exhausting part is not just the pain
For many people, the hardest part is how long it takes to be believed and what happens after. Taylor does not separate diagnosis delays from fragmented care. “It is both, and they feed each other,” she says.
Many Australians still wait years for a formal diagnosis. Then, even with a diagnosis, the plan often falls apart. “People are referred from one provider to another without coordination, without shared communication, and without a clear long-term plan,” Taylor says. “A diagnosis alone does not equal care.”
That matters because endometriosis rarely fits neatly into a short consult. It can affect energy, mood, digestion, bladder symptoms, sex, sleep and the ability to show up consistently at work or school. It also carries the mental load of not knowing when the next flare will land.
Why diagnosis still takes so long
- pain gets normalised, especially period pain
- symptoms get minimised, shaped by gender bias
- primary care training in complex pelvic pain stays limited
- surgical diagnosis pathways still dominate
- stigma around menstruation and reproductive health lingers
What fragmented care looks like
Fragmented care can sound like an admin problem. In real life, it becomes a second job.
Taylor describes the typical pattern. A GP for scripts, a gynaecologist for surgery, a psychologist for mental health, a pelvic health physiotherapist for pain, maybe a dietitian, maybe a pain specialist. “But none of them are connected,” she says.
So the patient becomes the coordinator. You carry records between providers. You repeat your history, including the hard parts. You manage waitlists and conflicting advice. You pay out of pocket, often repeatedly.
“The impact is enormous,” Taylor says. It can mean lost workdays, career stagnation, financial strain, relationship stress and mental health decline. “Fragmented care is not just inconvenient, it compounds illness.”
What coordinated care should look like
Taylor describes “good care” as multidisciplinary, trauma-informed, biopsychosocial and ongoing. Not a one-off appointment, not a single surgery and not a set of separate providers who never speak to each other.
It also needs a care coordinator. Chronic conditions require continuity, not episodic care.
“That means a core team: GP, gynaecologist, pelvic health physiotherapist, pain-informed psychologist, and where needed, dietitian and pain specialist,” she says. The team needs shared communication, shared care planning and follow-up over time.
Good care also includes:
- early intervention pathways
- clear referral systems
- shared care planning
- ongoing monitoring and adjustment
“Chronic conditions require coordinated systems, not episodic appointments,” Taylor says.
Telehealth can help, but only if it reduces the chaos
If you live regionally, the barriers get bigger: travel, time off work, limited specialist options and higher costs. Taylor says structured telehealth can improve access, reduce travel burden and create continuity between in-person appointments.
But telehealth does not help if it simply adds another disconnected appointment to the mix. “Telehealth must be coordinated and intentional,” she says. “Simply offering isolated telehealth appointments does not solve fragmentation.”
“When done well, telehealth becomes a bridge, not a band-aid,” she adds.
The myths that keep people stuck in the loop
Taylor says these lines still cause harm in clinics, schools, workplaces and even at home:
- “Period pain is normal.”
- “You’re too young for that.”
- “It’s just stress.”
- “Have a baby and it will settle.”
- “The scan is normal, so nothing is wrong.”
“These narratives delay care, silence symptoms and undermine trust,” she says. “Endometriosis and pelvic pain are complex inflammatory and neurological conditions. They deserve clinical seriousness.”
What schools and workplaces can do now
Support should not start at a specialist appointment. It should start at first symptoms.
In schools, Taylor wants menstrual health literacy taught as standard curriculum, absence policies that recognise chronic pain and better training for school nurses and counsellors.
In workplaces, she calls for flexible work policies, stigma-free health conversations and manager education that reflects fluctuating symptoms.
“Supportive environments reduce long-term harm,” Taylor says. “When someone’s symptoms are believed and validated early, it can completely change the trajectory of their health and wellbeing. Today, workplaces also have easy access to practical tools so there really is no excuse not to support people properly.”
The reforms that would change outcomes fastest
If Taylor could prioritise urgent reforms, she would focus on system design that reflects the reality of living with endometriosis:
- Medicare reform for complex chronic care so longer consultations and teams are properly funded
- expand multidisciplinary care rebates so pelvic physio and psychology are accessible
- earlier intervention pathways with clear national referral guidelines
- workforce training with pelvic pain education built into GP and allied health training
- sustained research investment, especially in non-surgical management and pain science
“We need system design that reflects the complexity of this condition,” she says.
The bottom line
For anyone second-guessing their symptoms, Taylor keeps it clear.
“If your pain is impacting your life, it matters,” she says. “Pain that stops you studying, working, sleeping, or functioning is not ‘normal.’ You deserve investigation. You deserve support. You deserve coordinated care.”
If your body is starting to feel like it is shrinking your life, that is reason enough to seek clearer next steps and stronger support.
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