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P.Jason Abbott’s interest in gynecology was sparked in the early 1990s when he treated a significant number of women who complained of troubling symptoms including, but not limited to, pelvic pain, fatigue, heavy bleeding, painful sex and movement. painful intestinal.
And while some of these women would eventually be given a diagnosis of endometriosis – a serious disease 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 symptoms.
“What is Endometriosis?” interactive graphics
“The medical community thought we could cure endometriosis with a pill or surgery,” Abbott said. “And if that didn’t solve the problem, well, it had to be another condition.
“I wanted to know how to help these people who had very unusual and different symptoms, some of whom responded brilliantly to surgery and medical care, and some of whom responded to nothing.
“There was no rhyme or reason. At the time, endometriosis was a disease that made no sense to me. I have spent the past 25 years trying to investigate further, and this has highlighted the lack of evidence and research on this condition. “
However, it wasn’t until this month that Australia released its first draft guidelines for the clinical diagnosis and management of endometriosis, decades after Abbott began work in the field. This means that women in Australia have had to face an average of five to eight years between first presenting symptoms and receiving a diagnosis (the delay was seven to 12 years), and that their symptoms are still often rejected or treated. hurt in the meantime, resulting in absence from work, distress and mental health problems, unnecessary or unnecessary treatments and surgeries, and chronic pain.
A report released by Brigham and Women’s Hospital in the United States in 2014 described how the science that informs medicine – including disease prevention, diagnosis, and treatment – “routinely fails to account for the crucial impact of sex and gender.” .
“This happens in the early stages of research, when females are excluded from animal and human studies or the sex of animals is not indicated in the published results,” the report said.
“Once clinical trials have begun, researchers often fail to enroll adequate numbers of women or, when they do, fail to analyze or report data separately by gender. This hinders our ability to identify important differences that could benefit everyone’s health. “
One of the most catastrophic examples of this research gap is endometriosis. The disease affects 176 million people worldwide, or one in nine women. In Australia, around 830,000 women and people of different genders are living with endometriosis. It is a multi-systemic, debilitating and chronic health problem. Abbott said this is 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 organizations such as Endometriosis Australia and Patients that have been a powerful force in supporting women,” Abbott said. “It took a huge amount of work. It is now absolutely clear that this cannot be cured with treatment, this is a chronic disease, it is recurrent, often has a strong genetic component and can affect women not only during their reproductive life but throughout their lives.
“We need to 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 funds in research, education and development and implementation of the National Endometriosis Action Plan. While Australia has lagged behind countries like the UK, which already has clinical guidelines, the significant investment in research and education “means we are now very much in step with the times,” said Abbott.
Abbott was part of the expert working group that drafted the guidelines and acknowledges that there are still gaps.
“Clinical guidelines must be evidence-based, and while we have researchers in areas in everything from diagnostic imaging to surgery, it all takes time to do and filter out,” he said. “The guidelines cannot be based on anecdotal evidence. Hopefully in the next iteration of these guidelines, we will be able to make substantial additions, including recommendations on surgery, so that there will be improvements in women’s health care for decades to come. “
There is also much that can be done to allow women, girls, and other people with uterus to understand that pain is not normal. Dr Mike Armor, a member of Endometriosis Australia’s clinical advisory board, led a study published on November 12 in the Journal of Pediatric and Adolescent Gynecology that looked at 4,202 Australian adolescents and young women aged 13-25 on literacy about menstrual health and menstrual management.
The survey found that most young women did not seek medical advice about their menstrual symptoms but used information from the internet (50%) and engaged in self-management, most commonly taking over-the-counter medications such as acetaminophen (51 %) or ibuprofen (52%). “Despite significant dysmenorrhea (menstrual pain), the majority (51%) believed their periods to be normal,” the study found. “Women with higher pain scores were more likely to classify their periods as ‘abnormal’
but he is no longer likely to speak to a doctor. Only 53% of those in school have heard of endometriosis. “
Armor said from previous research that it’s clear that most young women don’t seek medical treatment for menstrual pain, but rather self-medicate, but her team wanted to find out if they had good information on what type of self-care to use. , including the type of symptoms that should require a trip to the primary care physician and whether their personal development, health and physical education course or similar course was a good source of information.
His research has identified a number of problems, he said.
“We teach menstruation in the context of sexuality and sexual health by connecting it to puberty and relationships, how we change and go through,” Armor said.
“Traditionally, menstruation has been taught in the context of sexual health practices and not a health problem per se. There is very little content in the program that actually explores menstruation. The program is not about pain management or self-care options. “
With poor education on menstrual pain and health, a lack of medical research on reproductive problems affecting them, and a traditionally poor understanding in the medical profession of pelvic pain and related conditions such as endometriosis, the average cost to a woman with endometriosis both personally and for society is around A $ 30,000 per year, according to previous research by Armor.
“This national guideline should help with some of these issues – and there has been significant funding already earmarked to improve GP education and awareness and to improve menstrual health literacy through menstrual education,” he said. said.
Lesley Freeman is president of EndoActive Australia and New Zealand, a health promotion charity that raises awareness of endometriosis, and the organization was part of the expert advisory group that informed the national action plan.
Freeman welcomed the guidelines, which are open for feedback until December 24, but expressed concern about some of the clinical languages used and the lack of explanations on the procedures. For example, according to the guidelines for signs and symptoms of endometriosis, it is said that a “pelvic exam” should be offered by doctors.
“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 have a pelvic exam and they think it might be an ultrasound or an x-ray and they don’t realize it’s actually an internal exam.
“This can be a huge shock if you are not prepared, and if you are examined by a man and you are not offered the chance to have it performed by a woman. It can be very difficult to deal with someone who is suffering from pain and painful sex. “
It was also disappointing, he said, that it took up to 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.”
“Until recently, women weren’t included in a lot of medical things, including research or decisions about them,” she said. “That is why it is so important to state in advance who these guidelines are for.
“Women have been missing from the conversation about their health for so long.”
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