Words by Jo Barry // photograph by Valeriia Miller
Trust in medicine is rarely abstract. It is not an idea. It is not a policy framework. It lives in the body. Endometriosis taught me that early.
For years, I carried pain that scans couldn’t explain. Ultrasounds that showed very little. Appointments that ended with phrases like “hormonal” or “manageable.” The quiet implication that maybe this was simply part of being a woman.
But eventually, it wasn’t manageable.
My pathology later confirmed aggressive Stage 4 endometriosis. The disease had infiltrated multiple organs beyond my uterus. The surgeries were complex. The recovery long. The medical necessity real.
And still, watching the recent 4 Corners investigation stirred something I didn’t anticipate.
When someone who once operated on your body appears in national headlines, it doesn’t feel distant. It feels intimate. You remember the hospital corridors. The fluorescent light. The weight of a consent form in your hand. The particular kind of stillness before anaesthesia.
You remember choosing trust.
Endometriosis patients often carry a form of medical hyper-awareness. Many of us fought for a diagnosis. Many were dismissed before being believed. That fight changes you. It teaches you to research. To question. To advocate. But it also teaches you how much you rely on expertise once you finally find it.
My journey did not end with just surgery. It moved through IVF. More operations. The gradual realisation that my fertility was not going to unfold the way I had imagined. Eventually, I underwent a radical hysterectomy and entered surgical menopause overnight.
That chapter was not neat. It was grief layered over relief. Loss alongside survival. And it took years to metabolise. Years to reach a place where I could speak about it without my throat tightening.
This week, that chapter feels slightly ajar again.
Not because the facts of my diagnosis have changed. They haven’t. My disease was confirmed. My treatment pathway was real. But when trust is shaken publicly, it reverberates privately.
I’ve found myself revisiting moments I thought were settled. Not with accusation. Not with certainty. But with that very human instinct to rewind the tape.
Could anything have unfolded differently?
Were there alternative sequences available at the time?
Would I have made different choices if I knew what I know now?
These questions are not conclusions. They are the psychological aftershocks of vulnerability.
There is something uniquely intimate about surgical care. You allow someone inside your body. You allow them to shape your internal landscape. In cases like mine, that landscape includes fertility, hormones, identity. The relationship is technical, yes. But it is also profoundly human.
For women directly affected by the current investigation, the emotional weight is immense. For the wider endometriosis community, the feeling is subtler but recognisable. A quiet stirring of doubt in a system many of us already approached cautiously.
Endometriosis is an invisible disease. We already fight to have our pain recognised as legitimate. Moments like this can make that fight feel fragile again.
Out of my own experience, I created rae, a wearable heat device designed to offer daily dignity during painful days. It was not born from anger. It was born from a desire to reclaim agency in the smallest ways. If the medical system can feel uncertain at times, comfort need not. Care is not only surgical. It is daily. It is how you support your body between appointments. It is how you build strength after loss.
This week has reminded me that trust is not stored in paperwork. It is stored in muscle memory. In breath. In the way your chest tightens when you hear a familiar name.
Trust, like pain, is embodied. And when it trembles, the body remembers.
