Endometriosis has historically been diagnosed through surgery and until recently has been the only way of getting a definitive diagnosis.
The most common surgical procedure for endometriosis is laparoscopy. This is when a thin telescope is inserted into the belly button to see and access the organs inside the abdomen and pelvis. If the surgeon sees anything abnormal during the procedure, then they can remove this (called a biopsy) and send it to a lab. In the lab they can confirm if the cells in the biopsy are from an endometriosis lesion or not. This technique using biopsies is still the most accurate form of diagnosis at the moment.
However there are quite a few drawbacks to using surgery to diagnose including
- Cost – depending on whether you are in the public or private system there can be quite a large out of pocket cost, from a few hundred up to over $10,000 dollars.
- Waiting times – because this is a surgical procedure it can’t be done in private rooms, but requires a hospital visit meaning that there needs to be availability of a surgeon, an anaesthetist, surgical nurses and usually a hospital bed afterwards This means there is often a long wait time – especially in the public system
- Risks – because it’s a surgical procedure it comes with risks getting an infection, major bleeding, and injury to important structures like the bowels or bladder. It also often takes about a month or more to recover from the surgery.
Because of all of these factors, there has been a big effort to find ways to diagnose endometriosis that is low cost, non (or less) invasive, and low risk. Ideally something that can be done either at a doctors office, or even better, in the privacy of your own home.
There are a number of different tests that are being developed, from saliva tests, to blood tests, and even vaginal swabs. Unfortunately, at the moment, while some of these are quite promising, none seem ready for “prime time” usage. To have a good test you need to be able to make sure that people who have the disease get a positive result and those that don’t get a negative result. Getting too many false negatives or false positives can mean the test isn’t very useful and for most of these tests at the moment they are still needing to work on improving this. For example the blood test seems very accurate, but so far can only detect severe endometriosis.
Over the past ten years or so, there has been an increasing ability to “see” endometriosis using imaging such as transvaginal ultrasound (TVUSS), an internal scan where the ultrasound wand is inserted into the vagina, and magnetic resonance imaging (MRI). While these aren’t able to be done at home, unless you happen to have an MRI machine in your back yard, they are much less expensive than surgery and the wait time is much less.
It’s important to understand that there are different “stages” of endometriosis – ranging from superficial to deep. While these stages don’t correlate to the amount of pain or other symptoms, it’s usually much easier to “see” endometriosis when there is more of it. Not all types of endometriosis are yet reliably seen on an imaging test. For example, severe endometriosis with deep nodules and adhesions (bands of scarring which can attach to other organs) is easier to see than superficial endometriosis, which sometimes consists of a few deposits no larger than a few millimetres.
So what this means is at the moment we can use TVUSS and MRI to “rule in” endometriosis. That means if you have endometriosis show up on a scan, we can be quite confident that you do have endometriosis – especially if it shows up with indicators of deep infiltrating endometriosis. But if you have a “clear” scan it doesn’t mean that you don’t have endometriosis. No test is perfect and, especially if you have superficial endometriosis, it can still be hard to spot. But things are improving – especially using new technologies like AI and machine learning. If you have a “clear” scan and have endometriosis symptoms then you should speak to your doctor as you might need to consider having surgery for a diagnosis, because a clear scan should never be taken as being definitive.
At the moment, while we wait for the holy grail of a very accurate, cheap and non-invasive test, TVUSS is probably the best tool we have at the moment. It can be done in about 30-60 minutes, costs around $500 dollars or so, and you can often get a scan done within a few weeks of having a referral.
Associate Professor Mike Armour is the Director of Research and an Associate Professor in reproductive health at NICM Health Research Institute, Western Sydney University where he is currently running several clinical trials on endometriosis, menstrual health, and complementary medicine. Mike has published 120 peer reviewed articles on various aspects of women’s health including medicinal cannabis, Chinese medicine and acupuncture. Mike is also an author on several textbook chapters including several on medicinal cannabis for women’s health. Mike has had significant media attention on his work including 15 articles in The Conversation, an SBS Insight special on endometriosis, an SBS special on herbal medicine for period pain and over 300 pieces of international news media with an estimated readership of 80 million across over 100 countries including Channel 7 News, ABC News, and The Guardian.
Mike is heavily involved in research and treatment of endometriosis, and he is the complementary medicine expert on the endometriosis expert working group (EEWG) for the Royal Australia and New Zealand College of Gynaecologists (RANZCOG). Mike is also a World Endometriosis Society Ambassador, Academic lead of the Menstrual Cycle Research Network (MCRN) at Western Sydney University and Chair of the Australasian Interdisciplinary Researchers in Endometriosis (AIRE).
Mike is currently leading the EndoCann trials — a clinical study investigating medicinal cannabis for endometriosis — and is actively recruiting participants. Learn more or sign up here.
