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.
While Heather Bowerman, the woman quoted frequently this week says her company’s test can diagnose endo in one day and it's ready to go, Australian scientists (not American CEOs of a start-up tech company) say "no dice". Imagine if the TGA approved a test that had only been used on 24 people. Imagine!
Some researchers say it's simply not possible to diagnose endo with a blood test. Others are very excited that one day it will be.
Science and research tells us that a blood test for diagnosing endo is unlikely.
A major review on diagnostic markers for endometriosis in blood was recently published. The authors included 141 published studies that involved 15,141 participants and evaluated 122 blood biomarkers. They concluded that, "Overall, none of the biomarkers displayed enough accuracy to be used clinically outside a research setting."
Now think about the study that’s been in the news this week. How many participants? 24… with highly restrictive criteria in a highly controlled setting. That simply isn’t realistic, which is why further testing on a MUCH larger scale is absolutely necessary before any more inflated claims are made and before any ‘MASSIVE NEWS FOR ENDO SUFFERERS’ posts are shared.
Am I sounding like a killjoy? Stay with me!
OK, let’s say, hypothetically, scientists did develop a single diagnostic biomarker for endometriosis and a blood test was approved and released onto the market. What are the benefits, and for whom?
Well, for starters, young girls and teenagers could receive a diagnosis at the first sign of symptoms, rather than waiting over 11 years to put a name to their pain. However, that would only be possible if the blood test was accurate and advanced enough to detect early, mild signs of endometriosis.
Having an early diagnosis would hopefully lead to early intervention and early treatment. Ideally, this would prevent chronic pain from developing (chronic pain is tricky to overcome once nerve sensitivity and pain pathways in the brain have been set up - I can tell you from experience).
Early treatment could also mean that there's a reduced need for surgery or that surgery could be delayed. However, we must remember that good excision surgery is the gold star treatment for the removal of endo so getting diagnosed via a blood test will not necessarily exempt a patient from needing a laparoscopy.
There are other benefits of early diagnosis and treatment. Women with endo will tell you that there is major stigma attached to this disease. It’s often dismissed as ‘women’s troubles’ and patients are often told, “The pain’s all in your head".
Sometimes they’re referred to a psychiatrist, rather than a gynaecologist. Sometimes they are refused treatment altogether. While we have some wonderful endo specialists in Australia, unfortunately we are still experiencing gender bias in the treatment of pain.
Having confirmation of disease early on may help women get the treatment they need and alert their physicians that their pain is not “just period pain” and that they’re suffering from a chronic, painful condition.
Endometriosis that is left untreated for many years can lead to permanent damage of internal organs. Damage and scarring of the ovaries and other reproductive organs can have a negative impact on a woman’s fertility. In some cases this means sub-fertility or infertility. For many women, not being able to get pregnant or carry a baby alive to full-term is the most heart-breaking part of their endo story, which makes early treatment all the more important.
Basically, early diagnosis + early treatment = improved quality of life and increased fertility.
So – of course a blood test to diagnose endo early would be terrific. However, let’s be optimistic but pragmatic and continue to campaign for better treatment for women with endo – by the medical and wider community.
There are enough of us – 176 million worldwide – to make some serious noise and demand we stop being discriminated against simply because we are women.
Mamamia's Endo Awareness Week, curated by Founder of EndoActive Syl Freedman, shines a light on a disease suffered by one in 10 Australian women. To read more from Endo Awareness Week, click here. If you'd like to find out more information on Endometriosis, Syl's story or Endo Active, visit endoactive.org.au and keep up to date on their Facebook page.
Have you struggled with Endometriosis, or know someone that does? We'd love for you to share your experiences in the comments below.