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‘Endometriosis made zero sense to me’: what will it take to stop women suffering needlessly? | Society


Prof Jason Abbott’s interest in gynaecology was piqued in the early 1990s when he treated a significant number of women complaining of troubling symptoms including – but not limited to – pelvic pain, fatigue, heavy bleeding, painful sex and painful bowel movements.

And while some of these women would eventually be given a diagnosis of endometriosis – a severe disorder in which tissue similar to the lining of the uterus grows outside the uterus, causing inflammation and pain – Abbott said the identification of the disease often provided no help in treating the symptoms.

‘What is endometriosis?’ interactive graphic

“The medical community thought we could cure endometriosis with a pill or a surgery,” Abbott said. “And if that didn’t fix it, well, it must be some other condition.

“I wanted to know how to help these people who had very unusual and diverse symptoms, some of whom responded brilliantly to surgery and medical treatment, and some of whom responded to nothing at all.

“There was no rhyme or reason to it. At the time, endometriosis was a disease that just made zero sense to me. I’ve spent the last 25 years trying to investigate further, and it highlighted the lack of evidence and research into this condition.”

Yet it was not until this month that Australia released its first draft guidelines for the clinical diagnosis and management of endometriosis, decades after Abbott began working in the field. It has meant women in Australia have faced an average of five to eight years between first presenting with symptoms and receiving a diagnosis (the delay used to be seven to 12 years), and that their symptoms are still often dismissed or poorly treated in the meantime, resulting in time off work, distress and mental health issues, unnecessary or useless treatments and surgery, and chronic pain.

A report published by the Brigham and Women’s hospital in the US in 2014 described how the science that informs medicine – including the prevention, diagnosis, and treatment of disease – “routinely fails to consider the crucial impact of sex and gender”.

“This happens in the earliest stages of research, when females are excluded from animal and human studies or the sex of the animals isn’t stated in the published results,” the report said.

“Once clinical trials begin, researchers frequently do not enrol adequate numbers of women or, when they do, fail to analyse or report data separately by sex. This hampers our ability to identify important differences that could benefit the health of all.”

One of the most catastrophic examples of this research gap is endometriosis. The disease affects 176 million people worldwide, or one in every nine women. In Australia about 830,000 women and gender-diverse people live with endometriosis. It is a multisystem, debilitating and chronic health problem. Abbott said this was why the release of the draft guidelines for the clinical diagnosis and management of endometriosis was such a pivotal moment.

“These guidelines are a testament to organisations like Endometriosis Australia and patients who have been a powerful force in advocating for women,” Abbott said. “It’s taken a huge amount of work. It’s now absolutely clear this can’t be cured with one treatment, this is a chronic disease, it’s recurrent, it often has a strong genetic component, and it can effect women not just during their reproductive life but their entire lives.

“We must make sure we treat everyone well and effectively.”

The causes of endometriosis are unclear but, along with the draft guidelines, the Australian government has invested funding towards research, education, and developing and implementing the National Action Plan for Endometriosis. While Australia has lagged behind countries such as the UK, which already has clinical guidelines, the significant research and education investment “means we are now definitely up to speed”, Abbott said.

Abbott was on the expert working group that drafted the guidelines, and acknowledges there are still gaps in them.

“Clinical guidelines must be based on evidence and, while we have researchers in areas in everything from diagnostic imagery to surgery, it all takes time to do and filter through,” he said. “Guidelines can’t be based on anecdotal evidence. We hope for the next iteration of these guidelines, we will be able to make substantive additions including to recommendations around surgery so there will be improvements for women’s healthcare for decades to come.”

There is also more to do to empower women, girls and other people with uteruses to understand that pain is not normal. Dr Mike Armour, a clinical advisory committee member for Endometriosis Australia, led a study published on 12 November in the Journal of Pediatric and Adolescent Gynecology that surveyed 4,202 adolescent and young Australian women aged 13 to 25 about menstrual health literacy and menstrual management.

The survey found the majority of young women did not seek medical advice for their menstrual symptoms but used information from the internet (50%) and engaged in self-management, most commonly taking over-the-counter medications such as paracetamol (51%) or ibuprofen (52%). “Despite having significant dysmenorrhea (period pain), the majority (51%) thought their period was normal,” the study found. “Women with higher pain scores were more likely to rate their period as ‘abnormal’
but not more likely to speak to a doctor. Only 53% of those at school at heard of endometriosis.”

Armour said from previous research it is clear most young women do not seek medical attention for their period pain but rather self-medicate, but his team wanted to find out if they had good information about what kind of self-care to use, whether they understood the kind of symptoms that should require a trip to the GP, and whether their personal development, health and physical education class or similar class was a good source of information.

His research identified a number of issues, he said.

“We teach menstruation under the context of sexuality and sexual health linking it to puberty and relationships, how we change and transition,” Armour said.

“Traditionally menstruation has been taught in the context of sexual health practices and not a health issue on its own. There is very minimal content in the syllabus that actually explores menstruation. The syllabus doesn’t deal with pain management or self-care options.”

With poor education about pain and menstrual health, a lack of medical research into reproductive issues that affect them, and a traditionally poor understanding in the medical profession of pelvic pain and conditions related to it such as endometriosis, the average cost for a woman with endometriosis both personally and for society is about A$30,000 a year, previous research by Armour has found.

“This national guideline should assist with some of these issues – and there has been significant funding already allocated to improving GP education and awareness and to improving menstrual heath literacy through menstrual education,” he said.

Lesley Freeman is president of EndoActive Australia and New Zealand, a health promotion charity raising awareness of endometriosis, and the organisation was on the expert advisory group that informed the national action plan.

Freeman welcomed the guidelines, which are open for feedback until 24 December, but said she was concerned by some of the clinical language used, and lack of explanation about procedures. For example, under the guidelines for the signs and symptoms of endometriosis, it says a “pelvic examination” should be offered by clinicians.

“We get a lot of feedback from people with endometriosis and one thing that really upsets them, especially young women, is when a procedure isn’t explained,” Freeman said. “So they go in for a pelvic exam and think it might be an ultrasound or X-ray and don’t realise it is in fact an internal exam.

“That can come as a huge shock if you’re not prepared, and if you’re being examined by a man and not offered the option of having it performed by a woman. It can be very confronting to someone suffering pain and painful sex.”

It was also disappointing, she said, that it took until page 21 of the 63-page document before the target population for the guideline was identified – “women, non-binary and gender diverse people with suspected or confirmed endometriosis”.

“Up until recently women didn’t get included in much that was medical, including the research or the decisions that affected them,” she said. “That’s why it’s so important to state who this guideline is for upfront.

“Women have been missing from the conversation about their own health for so long.”

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