Email What would an endometriosis blood test mean for patients? By Yasmin Jeffery
Posted April 14, 2019 05:16:39
Photo: Endometriosis affects 10 per cent of those who menstruate. (Flickr: Janine) Related Story: 'Everyone thinks they have endometriosis': Why I wish I trusted my instincts two surgeries later Related Story: As 'common as asthma and diabetes', but endometriosis is often missed Related Story: Considering surgery for endometriosis? Here's what you need to know Map: Australia
Experts in Australia say the creation of an endometriosis blood test — an avenue currently being explored by private researchers overseas — might not be a simple solution to the condition's often lengthy diagnosis process.
- There is no cure
- It does not always cause infertility
- Diagnosis can only be made via surgical intervention
- Endometriosis pain does not only occur during periods
Source: Endometriosis Australia
The common condition affects roughly 10 per cent of those who menstruate,causing significant pain, bowel and bladder problems, as well as infertility.
According to charity Endometriosis UK, it takes those who have the condition an average of seven and a half years to be diagnosed.
This reality, coupled with the fact many view the laparoscopy diagnosis method as invasive, has those with endometriosis and researchers eager for a better diagnostic process.
Following the Government's decision to invest $10 million to improve treatment and understanding of the "crippling" condition as part of its National Women's Health Strategy from next year, the development of a test closer to home could be on the agenda.
Here's why a test might not have the power to subvert the diagnosis process often endured by endometriosis patients.
What could a new diagnosis method mean for patients?
Private researchers in the UK have started studying the possibility of analysing blood samples for biomarkers of endometriosis that they say present themselves in the form of mitochondrial DNA mutations.
However, Dr Christian Becker, from the Nuffield Department of Women's and Reproductive Health at the University of Oxford, and who provided data for the study, told the ABC researchers did not currently have a clinically useful biomarker that was capable of achieving this.
And, even if a blood test were created from research, it remains unknown if or how it would improve the diagnostic process.
Pelvic Pain Foundation of Australia director Dr Susan Evans said a blood test that could reliably identify endometriosis wouldbe "great news".
Photo: Dr Evans says more research needs to be done before a test could change practice. (Supplied: UQ Institute for Molecular Bioscience)
But the question remained, Dr Evans explained, as to whether such a test would be able to exclude endometriosis and thus save those who did not have the condition from surgery.
"It would take a bit of time to work out in which particular clinical situations it would be most useful, and who might benefit most from it," she said.
Professor Luk Rombauts, Fertility Society Australia president-elect and World Endometriosis Society advisory board member, also said there were some "serious question marks" around the idea of an endometriosis blood test.
"Not everyone with endometriosis will have pain, or will have infertility, so [what happens] if you catch those and make them unnecessarily concerned?" he said.
Considering surgery? Here's what you need to know
Since endometriosis was first identified in the second half of the 19th century, doctors have been treating it surgically.
"Similarly, there are people out there that have fairly mild cases of the disease, and the question is, do we treat them in the same way as people with more severe cases?"
If such a blood test becomes widely available, Professor Rombauts said "we may potentially lose track of the fact that we shouldn't ever treat the disease — you should always treat the person".
What this meant, Professor Rombauts explained, is that "if a person comes to [a doctor] with pelvic pain, [they shouldn't] necessarily get stuck in the fact that they might have endometriosis — [they need to] treat the pain".
"There will be people where the idea of it being endometriosis is actually a red herring, and it's something else that's causing the pain," he said.
In addition to this, he said, there are already very "good" tests that are "underutilised", including imaging services such as ultrasounds or MRIs.
"These are readily available — it's just that GPs, even gynaecologists — some of them don't realise that we have these techniques available," he said.
According to Endometriosis Australia, the "only way to be 100 per cent certain" of an endometriosis diagnosis currently, is to undergo a laparoscopy and/or biopsy.
'I thought I was a hypochondriac'
Triple j host Bridget Hustwaite, 27, said her endometriosis diagnosis came at the end of a "long and frustrating journey".
"Over five years, I dealt with three different GPs," she explained.
Photo: Bridget Hustwaite says it took years to be diagnosed with endometriosis. (Supplied: Bridget Hustwaite)
"It wasn't until last year that I decided to go see a women's health GP who instantly booked me in for an ultrasound and referred me to a gynaecologist, who then highly recommended I undergo a laparoscopy."
She said she felt "instant relief" when she was finally diagnosed with endometriosis.
"It felt like the ultimate validation knowing that it wasn't all in my head and it was just great being able to think about the next step in terms of maintaining my health."
'Pain so bad I wanted to die'
Endometriosis affects one in 10 people with periods, but few know what it is and many go undiagnosed. One sufferer shares her story.
ABC producer Kathryn Perrott, 26, had a similarly difficult experience getting her endometriosis recognised, and she said the lengthy diagnosis process many endometriosis patients endured was part of what made the possibility of a readily-available and effective test exciting.
After scheduling a GP visit following two visits to the emergency room with severe period pain, Perrott asked to be checked for endometriosis, which is when she said she was taken seriously for the first time and referred to a gynaecologist.
She has since undergone two laparoscopies to diagnose and then remove as much of her endometriosis as possible. But she said the "damage was done" before she had reached this stage.
"I'd gone my whole life thinking it was all in my head because my friends had their periods as well and they weren't crippled in pain like I was, and so I was sort of not expecting to get the diagnosis I got," she said.
"If a test is developed, it could mean one less surgery for people who do have endometriosis, but also … have a huge impact on girls like me who spend years thinking they're a hypochondriac."
Topics: endometriosis, diseases-and-disorders, health, australia, united-kingdom
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