The Endometriosis Test I Needed

JO BARRY - A Test That Might Have Saved Me Years, If It Existed Here

After years of unanswered pain, Jo reflects on what a promising new UK test could mean for future diagnoses.

 

I had my first period-related trip to a toilet floor at 10, at school camp, terrified and with no idea what was happening to me. I did not get a real answer for a very long time.

That is not unusual. In Australia, the average wait between first symptoms and an endometriosis diagnosis sits at 6.5 to 8 years. By the time anyone said the word endometriosis to me properly, I had already had surgery, already decided the pain was just mine to carry, already learned to disappear from my own life for a week a month rather than make a fuss about it.

One in seven Australian women lives with endometriosis. That is not a rare disease. That is a bus full of women you know.

So here is the good news, delivered with the caution it deserves. In the UK this month, NICE (their version of a health guidelines body) recommended two new tests for endometriosis that do not involve surgery. One reads markers in saliva. The other reads signals from the gut using sensor pads, done in under an hour. Neither replaces a proper diagnosis yet, but both are being trialled over three years, and it is the first real movement on a diagnosis timeline that has not shifted in my lifetime.

I am not going to pretend this changes anything for you tomorrow. It is a UK development, not an Australian one, and I have no interest in selling you hope I cannot back up.

But what I will say is this. For years, I sat in appointments being told my pain was normal, or hormonal, or something I would grow out of. Watching a health system somewhere else finally admit that surgery should not be the only way to find out what is happening inside your own body, that is not nothing. It is a crack in a door that has been stuck for decades.

I built rae because I got tired of the only tools available to me being a hot water bottle and my own stubbornness. Yes, it will not diagnose you or fix you, but it will get you through the day while the rest of the system slowly and unevenly catches up.

If you are still waiting for your own answer, you are not being dramatic, and you are not imagining it. The wait is real, it is documented, and it is finally starting to move. Just not fast enough. And not here yet.

Jo xx, Owner of Scarlet