The Fight Before the Surgery
Endometriosis rarely begins with clarity. It begins with pain that doesn’t make sense. Scans that show little. Doctors who say it’s hormonal. A quiet internal question of whether you’re just weak.
I had internal ultrasounds in my early years that repeatedly showed “nothing wrong.” It wasn’t until surgery that advanced disease was confirmed. That is not uncommon.
Imaging can miss deep-infiltrating endometriosis. Diagnosis is still complex. Training pathways are still evolving. Research funding still lags behind the prevalence of the condition. Before we even get to surgery, most women have already fought to be believed. That fight changes you.
The Vulnerability of Surgical Trust
Surgery is not just technical. It is intimate. You sign consent forms. You hand your body over. You allow someone to reshape your internal landscape.
In my case, that landscape eventually included IVF, further surgeries, bowel resection, and a radical hysterectomy. I lost my remaining ovary, uterus and cervix. I became biologically childless.
That chapter nearly broke me. It took years to close that book. Years to rebuild physically and emotionally. This week, it feels slightly reopened. Not because my diagnosis has changed. It hasn’t. But because when trust is publicly scrutinised, it reverberates privately. I’ve found myself replaying moments I thought were settled.
Were there different pathways available? Could sequencing have changed anything? Would I have made different decisions with different information? These are human questions. They are not accusations. They are the natural aftershocks of vulnerability.
The Bigger Issue
This moment cannot become about fear. But it cannot be ignored either.
Endometriosis is not a minor gynaecological inconvenience. It is a complex, systemic disease that can involve the bowel, bladder, ureters, diaphragm and nerves. Advanced excision surgery requires significant expertise and multidisciplinary planning.
Australia has exceptional clinicians. But nationally consistent, clearly defined subspecialty pathways for complex endometriosis surgery are still evolving. We don’t need to make surgery harder to access for women who genuinely need it.
We need:
- Better structured specialist training
- Clear standards
- Transparent pathways
- Integrated fertility planning from the beginning
- More research funding
- Recognition that endometriosis deserves its own specialised focus
This is not about panic-driven reform. It’s about precision. Accountability and access must coexist.
Why I Built rae
Out of my own experience navigating chronic pain, surgery and menopause, I built rae. Not because a heat device replaces medical care. It doesn’t. But because everyday dignity matters.
Because while systems debate standards and headlines circulate, women are still waking up in pain. Still going to work. Still parenting. Still travelling. Still living.
Heat gives comfort. Movement restores confidence. Agency rebuilds strength. rae was my way of giving women a tool to stay in their lives while navigating pain.
Better surgery matters. Better research matters. Better systems matter. But so does the day-to-day.
Where I Stand
This week has reminded me that trust in healthcare is fragile for many women. We already fought to be diagnosed. We already fought to be believed. We already advocated for referrals, scans, and surgeries.
This moment must not send us backwards. It must push us toward excellence. Toward smarter systems. Stronger standards. Better training. More transparency. And continued compassion.
For the women directly affected by the current investigation, my heart is with you. For every woman quietly re-evaluating her own journey this week, I see you. And for the next generation of girls sitting on school camp, wondering why their stomach hurts so much, we owe them better.
Trust can wobble. But we can build stronger foundations, Jo xx