If you’re suffering from Endometriosis or experiencing symptoms, always seek medical advice from your doctor for diagnosis and treatment options.
Author Syl Freedman is the co-founder of EndoActive – a not-for-profit organisation advocating for women with endometriosis.
A few months ago, I was asked to comment on the news of a potential diagnostic test for endometriosis. Specifically, I was sent a scientific study published last August by a group of researchers in the US in a highly respected medical journal.
Globally, there is over an 11 year delay in diagnosis for women with endo. I lived with the painful symptoms from age 11 and was not diagnosed until the age of 21. It’s monumentally f***ed and needs to change.
At EndoActive we believe in evidence-based information. Not hype. The study I reviewed is certainly evidence-based, however the hype is not.
While a non-invasive diagnostic test for endo would be fantastic, I’m not holding my breath that this is just around the corner – as it has been purported to be.
From talking to several researchers, scientists, and doctors in EndoActive’s ‘brains trust’ and analysing the published paper carefully, I wouldn’t necessarily frame this as ‘massive news’. Not being pessimistic but realistic – this technology has a long way to go according to researchers here in Australia so let’s not get ahead of ourselves.
As patients we have to learn look at things critically and do our own digging. We must read the published papers. Look at the evidence.
And the evidence in this case is a study that has tested 24 women with severe endo who were not on any medication and had no co-morbidities such as Adenomyosis or auto-immune disorders. How does that translate to the real world? Is that representative of the endo population? No. It's not. Many of us are on medication. Many of us have multiple health problems.
Further research using thousands more women with less exclusion criteria needs to happen before we have a successful diagnostic test for endo.