ENDOMETRIOSIS DIAGNOSIS: WHAT YOU NEED TO KNOW

Updated October 2022 | 6 min read
Expert contributor Dr Sarah Holdsworth-Carson, endometriosis research scientist
Words by Trudie McConnochie

Despite being a common condition, an endometriosis diagnosis can take years. But new research initiatives and growing public awareness are giving hope to Aussie women living with the condition.

Imagine abdominal pain so debilitating you’re unable to 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 more than 830,000 Aussie women and teenage girls that takes on average, between seven and 10 years to be diagnosed. These timeframes are starting to improve with increased recognition of the disease.

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 a condition 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 a fundamental research scientist in the endometriosis field. She says strong social media campaigns by patient-advocacy groups like 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.

“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.”

Symptoms of endometriosis

Symptoms of endometriosis include:

• painful menstrual cycles
• pelvic pain (like period pain)
• pain during ovulation
• pain in lower back and thighs
• pain during sex or while going to the toilet
• heavy or irregular periods
• infertility
• bloating
• changes in bowel or bladder habits
• nausea and exhaustion.

“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 women have fertility issues – and by then, it’s much harder to treat, says Dr Holdsworth-Carson.

Causes of endometriosis

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. Recent studies claim women with a close relative who has endometriosis are seven to 10 times more likely to develop the condition.

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 to 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.”

Other possible causes of endometriosis include:

• metaplasis (when normal pelvic tissue turns into endometriosis)
• long and heavy periods
• frequent periods or short cycles
• getting your period before 11-years-old
• getting pregnant at an older age
• low immune system
• excessive alcohol use.

Getting an endometriosis diagnosis

When your period pain stops you from doing everyday activities, it’s time to get help. These activities include:

• missing work, school or recreational activities
• using medication to help ease the pain
• staying in bed for long hours
• symptoms getting worse
• your mental health worsens.

There are four grades of endometriosis that can be diagnosed, as follows:

• Grade one (mild): small patches of endometriosis inside of the pelvis
• Grade two and three (moderate): found on the ovaries and other parts of the pelvis
• Grade four (severe): spread to most of the pelvic organs.

Unfortunately getting a diagnosis for endometriosis can take several years, with many women being diagnosed after seeing a doctor for fertility or during an operation for another issue.

A pelvic exam, ultrasound, CT or MRI may be recommended in initial investigations, but won’t conclusively determine whether endometriosis is present.

Currently, the standard way to diagnose endometriosis is through a laparoscopy, which is keyhole surgery. It involves having an abdominal incision, and then often removing some tissue for testing.

“The reason it takes such a long time for diagnosis is because it involves an invasive procedure under general anaesthetic,” Dr Holdsworth-Carson says. “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.”

Currently, a laparoscopy – keyhole surgery involving an abdominal incision, with tissue removed for testing – is standard practice and the only way to confirm an endometriosis diagnosis. Research has also found that specialised ultrasounds can help make a reliable diagnosis, but not in all cases.

Dr Holdsworth-Carson and her team are working to develop a non-invasive method of diagnosis. 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 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.

Treatments for endometriosis

Options for managing and treating endometriosis include:

• pain relief medication
• hormone-based measures such as the oral contraceptive pill, an implant or IUD
• surgery to remove as much of the endometriosis as possible.

The right treatment will depend on your symptoms, the severity of your endometriosis and whether you want to get pregnant in the future.

Dr Holdsworth-Carson explains women who choose medical treatment may be looked after by 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.”

How to help drive your own diagnosis

To get an endometriosis diagnosis, women need to understand the disease and what their options are. Here’s a checklist to help:

Cut through the misinformation

There are a lot of myths about endometriosis, including that it causes infertility (it doesn’t, but it can make it more difficult to get pregnant) or that severe period pain is normal. Do your research, and arm yourself with as much information as possible.

Read trusted websites

To help get fact-based information about endometriosis, and learn what questions to ask, make sure you’re reading sites like:

• Endometriosis Australia 
• QENDO 
• Endometriosis Research Group at the University of Melbourne
• EndoActive
• Jean Hailes.

Join support groups

Sharing your experience with others can help you feel less alone and meet people facing similar issues. You can also discuss treatments and side effects as well as the emotional aspect of living with endometriosis. You can find support groups here.

Free mental health check-in

If you or your loved ones are impacted by the symptoms of endometriosis and need mental health support, our unique range of mental health and wellbeing programs can help you understand and improve challenges such as stress, anxiety and depression.

To support members with faster, easier access to qualified mental health professionals, we’re offering a free HCF HealthyMinds Check-in with a PSYCH2U psychologist for eligible members^{^}.

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