P.Roof Jason Abbott’s interest in gynecology 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 painful bowel movements.
And while some of these women will eventually be diagnosed with endometriosis – a serious disorder in which tissue similar to the lining of the uterus grows outside the uterus, causing inflammation and pain – Abbott said that identifying the disease often did not help treat the symptoms.
“The medical community thought we could cure endometriosis with pills or surgery,” Abbott said. “And if that didn’t fix it, well, that must be another condition.
“I wanted to know how to help those people who had very unusual and varied symptoms, some of whom reacted brilliantly to surgery and treatment, and some did not respond to anything.
“There was no rhyme or reason for that. At that time, endometriosis was a disease that simply didn’t make sense to me. I have spent the last 25 years trying to investigate further, and this has highlighted the lack of evidence and research into this condition. “
However, it was not until this month that Australia published its first draft guidelines for the clinical diagnosis and treatment of endometriosis, decades after Abbott began working in the field. This means that women in Australia have faced an average of five to eight years from the first presentation of symptoms and diagnosis (the delay used to be seven to 12 years) and that their symptoms, meanwhile, are still often rejected or poorly treated, resulting in absence from work, mental health problems, unnecessary or useless treatments and surgeries, and chronic pain.
A report released in 2014 by Brigham and Women Hospital in the United States describes how the science that reports on medicine – including prevention, diagnosis and treatment of disease – “routinely does not take into account the crucial impact of sex and sex.”
“This happens in the earliest stages of research, when females are excluded from animal and human studies or the sex of the animals is not stated in the published results,” the report said.
“Once clinical trials begin, researchers often fail to enroll the appropriate number of women or, when they do, fail to analyze or report data separately by gender. This hampers 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, about 830,000 women and people of different sexes live with endometriosis. It is a multisystem, exhausting and chronic health problem. Abbott said that was the reason why the publication of the draft guidelines for the clinical diagnosis and treatment of endometriosis was such a crucial moment.
“These guidelines testify to organizations like endometriosis in Australia and patients who have been a powerful force in advocating for women,” Abbott said. “It simply came to our notice then. It is now completely clear that it cannot be cured with one treatment, this is a chronic disease, it recurs, it often has a strong genetic component and can affect women not only during reproductive life but also throughout life.
“We need to make sure we treat everyone well and efficiently.”
The causes of endometriosis are not clear, but, together with the draft guidelines, the Australian government has invested in research, education and development and the implementation of the National Endometriosis Action Plan. Although Australia has lagged behind countries like the UK, which already has clinical guidelines, significant investment in research and education “means we are definitely at a speed now,” Abbott said.
Abbott was in the working group of experts that drafted the guidelines and admits that there are still gaps in them.
“Clinical guidelines must be based on evidence and, although we have researchers in all areas, from diagnostic images to surgery, it takes time to do that and filter it,” he said. “The guidelines cannot be based on unrelated evidence. We look forward to the next repetition of these guidelines, we will be able to make significant additions, including recommendations regarding surgery, so that there will be improvements in women’s health over the coming decades. “
Women, girls and other people in the womb should also be empowered to understand that pain is not normal. Dr Mike Armor, a member of the Clinical Advisory Board for Endometriosis in 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 on menstrual health literacy and menstrual cycle management .
The research showed that most young women did not seek medical advice because of their menstrual symptoms, but used information from the Internet (50%) and engaged in self-management, most often taking over-the-counter drugs such as paracetamol (51%). or ibuprofen (52%). “Despite having significant dysmenorrhea (periodic pain), the majority (51%) thought their period was normal,” the study found. Women with higher pain scores were more likely to rate menstruation as “abnormal.”
but he is less likely to talk to a doctor. Only 53% of those who heard of endometriosis at school. “
Armor said from previous research that it is clear that most young women do not seek medical help for menstrual pain, but only receive treatment, but his team wanted to know if they have good information about what kind of self-care they should use. , whether they understood the type of symptoms due to which they should travel to a general practitioner and whether their class of personal development, health and physical education or a similar class is a good source of information.
His research identified a number of problems, he said.
“We learn menstruation in the context of sexuality and sexual health by connecting it with puberty and relationships, how we change and transition,” Armor said.
“Menstruation has traditionally been taught in the context of sexual health practices, not in itself. The content of the program has a very minimal content that actually explores menstruation. The program does not deal with pain management or self-help options. “
With poor education on pain and menstrual health, lack of medical research on reproductive issues affecting them, and traditionally poor understanding of the medical profession of pelvic pain and related conditions, such as endometriosis, the average cost for a woman with endometriosis both personally and socially is about $ 30,000 a year, according to a previous study by Armor.
“This national guideline should help in some of these issues – and significant funding has already been set aside to improve education and awareness of doctors and to improve menstrual health literacy through menstrual education,” he said.
Leslie Freeman is the president of EndoActive Australia and New Zealand, a health promotion charity that raises awareness about endometriosis, and the organization was on an expert advisory group that informed the national action plan.
Freeman welcomed the guidelines, which are open for feedback until December 24, but said she was concerned about some clinical language being used and the lack of explanation of procedures. For example, the guidelines for signs and symptoms of endometriosis state that clinicians should offer a “pelvic examination.”
“We get a lot of feedback from people with endometriosis and one thing that really upsets them, especially young women, is when the procedure is not explained,” Freeman said. “So, they go for a pelvic examination and think it might be an ultrasound or an X-ray, and they don’t realize that it’s actually an internal examination.
“It can be a huge shock if you are not ready and if a man examines you and does not offer you the opportunity to be done by a woman. This can be very opposed to someone who suffers from pain and painful sex. “
It was also disappointing, she said, that it took page 21 of the 63-page document before the target population for the guidelines was identified – “women, non-binary and sexually diverse people with suspected or confirmed endometriosis”.
“Until recently, women were not involved in much medical, including research or decisions that affected them,” she said. “That is why it is so important to state in advance to whom these guidelines are.
“Women have been missing talking about their own health for so long.”