Endometriosis sucks, but the future is starting to look brighter. Photo: PeopleImages.
A decade after I first went to the doctor, I was diagnosed with stage four endometriosis.
It first came up when I was 30 and my husband and I were having trouble conceiving. I was told the only way to get a diagnosis was through laparoscopic surgery.
Ten years later, emboldened by the recent surge in women’s health discourse (at my age, nary a prosecco is popped without talk of perimenopause), I finally prioritised my own health and took myself to a specialist to discuss the symptoms I’d been experiencing since puberty.
My sonographer told me that only relatively recently had technology and training caught up enough to definitively recognise endometriosis from an ultrasound.
I was blown away when she looked at the grainy test on the screen and told me she was not only confident I had endometriosis, but that it was very advanced.
I wondered how many cases of endometriosis she’d already seen without knowing what she was looking at and how many of those women eventually got answers.
My eyes welled with tears when my gynaecologist confirmed my diagnosis. I had been laid up one day a month for so long, had been telling myself to suck it up, that it was par for the course for women. I had convinced myself I needed a higher pain threshold. What I really needed was validation that pain was real and that it was time to take it seriously.
Stage four endometriosis is the most severe form, characterised by deep endometrial implants, large ovarian cysts (endometriomas), extensive scar tissue (adhesions) binding organs together and potential infiltration into the bowel, bladder, or ureters, often creating a “frozen pelvis” severely impacting fertility and causing debilitating pain.
I had conceived naturally twice, an unlikely outcome I’m told, given how the endometriosis had impacted my anatomy. So it stood to reason the disease had only reached that severity in the past few years, after the birth of my second child.
In other words, had I investigated and intervened sooner, I’d have been in a much better position to tackle it.
I kicked myself for the martyr complex that had led me to that place.
But my gynaecologist, bless her, told me my avoidance was textbook — women do it all the time. I think that’s one of the reasons health concerns that affect only us fly under the radar and why, when they step into the light, it feels so much like a revelation.
When the Illawarra Women’s Health Centre recently reported on a breakthrough urine-based endometriosis test that might be available to women as early as 2027, I felt an unexpected jolt of excitement.
General manager Jess Davidson said the promise of a simple, non-invasive test that could give women answers in weeks instead of years would be “nothing short of life-changing”.
Right on, sister.
As someone who has lived it, I can confirm that the thought of women — my daughter included — getting a quicker, easier diagnosis and stepping onto the path to healing brings a smile to my face.
And I wonder, with a glimmer of hope in my heart, if one day, I will write about a game-changing treatment to follow that diagnosis. One that is effective, lasting and doesn’t require getting pregnant or having organs removed.
Because, as I have finally realised, “learning to live with it” was never a treatment plan.
