Australia has finally started taking endometriosis seriously. It’s on policy agendas, supported by public funding, and increasingly recognised as a condition with real economic and social impact. But that progress is incomplete.
Because sitting alongside it is adenomyosis, a condition affecting many of the same women, with similarly disruptive symptoms, that remains largely absent from the same level of awareness, investment and policy focus.
We are still only telling half the story
We’ve made real progress on endometriosis. There are now pelvic pain clinics, increased awareness, dedicated funding, and a growing understanding that this is not just “period pain”, but a chronic condition with measurable impact. That progress has also exposed a gap. Because adenomyosis is still sitting just outside that conversation.
Adenomyosis occurs when tissue similar to the lining of the uterus grows into the muscular wall of the uterus. It can cause heavy menstrual bleeding, chronic pelvic pain, fatigue, and, for some women, fertility challenges. It also frequently coexists with endometriosis. That overlap is where the system starts to fall short.
When complexity meets a system built for simplicity
Women’s health is still too often approached through single diagnoses. In reality, many patients are navigating multiple, overlapping conditions at once. Endometriosis and adenomyosis commonly coexist, but our care models, funding structures and awareness campaigns don’t reflect that complexity.
I know this because I lived it. I had stage 4 endometriosis. Multiple surgeries. A diagnosis that was meant to explain everything. Except it didn’t. The pain changed. The bleeding became heavier. More constant. Less predictable. Adenomyosis only entered the conversation later. And that delay is not unusual. It’s structural.
The economic conversation is incomplete
We often cite the estimated $9.7 billion annual cost of endometriosis to the Australian economy, including healthcare costs and lost productivity. That figure matters.
But adenomyosis is rarely included in that conversation. Not because it doesn’t contribute, but because it isn’t consistently measured, diagnosed or captured in the same way. And what we don’t measure, we don’t prioritise. The impact is already visible:
- Reduced workforce participation and productivity
- Repeated healthcare visits across multiple providers
- Delayed diagnosis leads to more complex and costly interventions
- Ongoing symptom management affecting day-to-day function
Why adenomyosis is still being missed
There are clinical reasons. Symptoms overlap with other conditions. Imaging, while improving with specialist ultrasound and MRI, is not always definitive. Historically, adenomyosis was most reliably confirmed after hysterectomy through pathology.
But the bigger issue is behavioural. We are still normalising severe menstrual symptoms. We are still defaulting to a single diagnosis. And we are still expecting women to adapt to pain before we investigate it properly. And when those patterns overlap, adenomyosis can be easy to overlook.
The policy gap
Australia has made meaningful progress on endometriosis through national action plans, pelvic pain clinics, and increased research attention. But adenomyosis is rarely explicitly included in these frameworks. That creates a gap between how patients experience pelvic pain and how the system is designed to respond. And a system built around single diagnoses cannot support patients navigating multiple conditions. That gap becomes more visible in practice.
Access to appropriate imaging, including specialist ultrasound and MRI, remains inconsistent and often dependent on referral pathways, clinician awareness and individual circumstances. While endometriosis has driven improvements in access and attention, adenomyosis does not always benefit from the same level of clarity or prioritisation. So patients are left navigating a system that has improved, but not evenly.
Treatment is not straightforward, and that matters
Adenomyosis is more complex to treat surgically. Unlike endometriosis, which can often be excised from outside the uterus, adenomyosis is embedded within the uterine muscle, making targeted removal far more difficult.
Management is typically focused on symptom control, including hormonal treatments, devices such as a hormonal IUD, pain management, and allied health support. For some women, a hysterectomy is considered the only definitive cure. That is a significant decision, particularly for those who have not completed their families or are not ready to consider major surgery.
What smarter reform looks like
If we are serious about improving women’s health outcomes, adenomyosis cannot remain on the sidelines. That requires:
- Dedicated research funding - not assumptions carried over from endometriosis
- Clearer diagnostic pathways - including GP education and access to specialist imaging
- Care models that reflect co-existing conditions - not single-diagnosis frameworks
- Workplace recognition of chronic pelvic pain - as a widespread issue
We cannot repeat the same delay
It took decades for endometriosis to reach its current level of recognition. We already know the cost of that delay. Lost time. Lost careers. Lost fertility. Lost trust in the system. We cannot afford to repeat that trajectory.
Adenomyosis is here. Affecting health, work, and quality of life. Sitting in the gap between what women experience and what the system is designed to recognise.
Women’s health does not exist in neat categories. Until policy reflects that, women will continue to navigate complex conditions with incomplete support.
