Endometriosis Diagnosis:Why there's hope for women

Endometriosis is common and misunderstood and can take years to diagnose. But new research initiatives and growing public awareness are giving hope to Aussie women living with the condition.

Trudie McConnochie
December 2019

Imagine having abdominal pain that’s so bad you sometimes can’t get out of bed in the morning … then imagine having that undiagnosed for almost a decade. 

This is the reality for some women* living with the side effects of endometriosis, a complicated condition that affects a staggering 700,000 Australian women and teenage girls – yet which takes, on average, between seven and 10 years to be diagnosed.

Endometriosis is a chronic gynaecological condition where endometrial tissue that’s like the uterine lining (known as the endometrium) grows outside the uterus, which can cause severe pelvic pain and affect fertility

Traditionally, it was something women endured behind closed doors, but thanks to growing public awareness, says researcher Dr Sarah Holdsworth-Carson, women are increasingly taking charge of their health and exploring the many ways to treat endometriosis.

Dr Holdsworth-Carson is part of a team of researchers at the University of Melbourne based at Victoria’s Royal Women’s Hospital working to further our understanding of endometriosis. She says strong social media campaigns by patient-advocacy groups such as EndoActive, Endometriosis Australia and QENDO are driving women to understand their options to diagnose endometriosis.

“The impact of endometriosis on women is quite profound,” says Dr Holdsworth-Carson, who has endometriosis herself. “You commonly hear, ‘I have really bad periods. I went to my mum for help,’ and [the mother] said, ‘Well, so did I, and I dealt with it, and you need to deal with it, too.’ People don’t realise what’s normal and what’s not normal.

“The message I always try to spread is: if you can’t get up and go to work because your pain is so bad, that’s not a normal amount of pain. Go to your GP and express all of your symptoms to them. If you’re not happy with how things go, find another GP. That’s where the onus comes on us as women and as patients to take charge.”

The drag of diagnostic delays

Symptoms of endometriosis include pelvic pain during periods (and sometimes at other times); pain during sex or while going to the toilet; heavy or irregular periods; infertility; bloating; and changes in bowel or bladder habits.

“A lot of the symptoms are common to other conditions,” says Dr Holdsworth-Carson. “So you might present with tummy and digestive problems for which you might be sent down the path of looking at gastro-intestinal diseases like irritable bowel syndrome or bladder problems like cystitis. That’s why it’s so difficult to diagnose.”

Complicating matters further, some women have no symptoms at all, meaning this progressive disease might not be detected until they have fertility issues – and by then, it’s much harder to treat, says Dr Holdsworth-Carson.

Her team is working to develop a non-invasive method of diagnosis. Currently, a laparoscopy – keyhole surgery involving an abdominal incision, with tissue removed for testing – is standard practice.

“The reason it takes such a long time for diagnosis is because it involves an invasive procedure under general anaesthetic. So you can understand why doctors are erring on the side of avoiding surgery – it’s high risk, and they want to see if they can treat the symptoms first,” she says.

The researchers also hope to classify the different types and stages of endometriosis so doctors can better target treatments to patients’ individual needs.

“Endometriosis is the development of lesions on the pelvic organs – for example, the surface of the bladder or on the ovaries,” says Dr Holdsworth-Carson. “Not enough research has looked at the lesions to assist with better diagnosis and better classification of the disease. We want to understand the lesion, what it’s doing, what it’s producing and if those molecules can be used as a biomarker [a molecule that signals disease].”

Dr Holdsworth-Carson’s work is one of many exciting research initiatives seeking to further our understanding of the disease. There are also teams at Victoria’s Royal Women’s Hospital studying a gene called vezatin, which may be associated with increased endometriosis risk, and another group investigating the psychological needs of women with the condition.

Causes and treatments

The causes of endometriosis are not yet fully understood. It’s believed a family history can raise your risk, as can having a normal or low BMI – although it’s not known why. Dr Holdsworth-Carson says the most widely accepted theory is retrograde menstruation – where menstrual fluid flows backwards through the fallopian tubes and into the pelvic cavity instead of leaving the body through the vagina.

“Within that blood you’ve got the cells of the endometrium,” explains Dr Holdsworth-Carson. “If they implant on the surface of an organ, they can grow blood vessels and form endometriotic lesions. The question is: if so many people – up to 80–90% of women – experience this retrograde menstruation, then why is it that only 10% of women go on to develop endometriosis? So there’s still a lot of unknowns.”

Treatments for endometriosis include pain relief, hormone-based measures such as the oral contraceptive pill, and surgery to remove as much of the endometriosis as possible.

Dr Holdsworth-Carson explains medical treatment may involve gynaecologists, physiotherapists, dietitians, chronic pain physiologists and psychologists. “Endometriosis can have a profound effect on a woman’s mental health,” she says.

“The message to anyone who thinks they may be suffering from the symptoms of endometriosis is to seek treatment, because the earlier they seek treatment, the better the outcomes.”

*HCF acknowledges individuals in the transgender community and people who are non-binary and living with endometriosis who may not identify as women.

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