Endometriosis diagnosis, treatment and support is still a pain

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Today is Day 2 of the Jean Hailes Women’s Health Week 2022, an initiative dedicated to all women across Australia to make good health a priority.

Ask anyone who suffers from endometriosis, and they will tell you, it is a pain. For many women, the journey to diagnosis and treatment can be as distressing as the invasive and inflammatory disease itself.

A research study in New Zealand has sought to understand the effects of this debilitating disease on women, including characterising their experiences of pain intensity, paths to diagnosis and the impact of this on their work and education. The study found that women often endured long delays in diagnosis, with their levels of reported pain routinely underplayed by medical staff and ineffective treatments such as oral contraceptives or analgesics (pain relief), presented as the first or sometimes only option.

Uterus endometriosis diagram
Endometriosis: a painful and debilitating disease in which uterine tissues grow outside the uterus. Credit: Fancy Tapis/Getty Images

50 endometriosis patients aged 18-48 were included in the study by researchers from the University of Canterbury, NZ, which involved 50 questions, of which 23 were text-based and 27 were quantitative answers. The patients then participated in online discussions.

On average, participants reported the onset of symptoms of endometriosis at age 15.3 years, with an average wait of 7.91 before confirmed diagnosis – often confirmed via ultrasound, laparoscopy or medical history. Patients in the survey reported a wide range of symptoms including a long list of different types of chronic pelvic pain, diarrhoea, fatigue, nausea and lower back pain, all of which can drastically affect work, education and mental health.

Read more: Undiagnosed endometriosis compromises fertility treatment

You’re probably thinking that with all this pain, surely a diagnosis would come swiftly.

Sadly, the authors of the study found that “Patients indicated not only that their experiences of pain were immense, but also that convincing others, including clinicians, of their state of pain could be challenging or impossible”. This, write the authors, is because “pain is subjective, and endometriosis patients do not have a method to prove that their pain is real”.

There is also evidence that endometriosis sufferers show significantly lower pain tolerances than non-sufferers and that the constant sensitisation “leads to an increase in pain symptoms over time – even if the disease itself does not appear to progress”.

The downplaying of women’s reported levels of pain is not new. Not only do women experience more chronic pain conditions than men, studies show that they are taken less seriously when they do report pain, with some showing that women are more likely than men to receive a sedative rather than an analgesic to relieve pain. The sex gap reaches even further into our health system than you might think, with some research ignoring the effects of sex when gathering and analysing data and new research suggesting that paramedics are more likely to fail to recognise the signs of stroke in women than men.

Female patient talks with medical professional
Open dialogue between patients and medical professionals is key to successfully diagnosing and treating endometriosis. Credit: The Good Brigade/Getty Images

The NZ study reports that the most common emotion felt after endometriosis patients received a diagnosis was relief, followed by being overwhelmed, angry, upset, scared and confused. “In addition to relief, many patients shared that they felt vindicated or validated, that they had been right about having endometriosis, and those that had dismissed them had been wrong.”

“The patients were angry primarily at the doctors who had dismissed them or prolonged their journey to obtaining a diagnosis.”

Although there is hope for better diagnosis and treatments in the future, this research advocates for an increased focus on practitioner-patient dialogue.

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