Wednesday, December 2

‘Endometriosis didn’t make sense to me’: what does it take to prevent women from suffering unnecessarily? | Society


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

And while some of these women would eventually receive 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 identifying the condition often did not help. treat symptoms.

‘What is endometriosis?’ interactive chart

“The medical community thought we could cure endometriosis with a pill or 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 for it. At that time, endometriosis was a disease that didn’t make any sense to me. I’ve spent the last 25 years trying to do more research and highlighted the lack of evidence and research on this condition. “

However, it was not until this month that Australia published its first draft of guidelines for the clinical diagnosis and treatment of endometriosis, decades after Abbott began working in the field. It has meant that women in Australia have faced an average of five to eight years between first presentation of symptoms and diagnosis (the delay used to be seven to 12 years), and that their symptoms are often ignored or ignored. they treat badly meanwhile. , resulting in time off from work, anguish and mental health problems, unnecessary or useless treatments and surgeries, and chronic pain.

A report published by the Brigham and Women’s Hospital in the USA in 2014 described how the science that informs medicine, including the prevention, diagnosis and treatment of disease, “usually does not consider 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 the animals is not stated in the published results,” the report said.

“Once clinical trials begin, researchers often do not enroll an adequate number of women or, when they do, they do not analyze or report data separately by sex. 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, some 830,000 women and people of diverse gender live with endometriosis. It is a chronic, debilitating and multi-systemic health problem. Abbott said this was the reason why the launch of the draft guidelines for the clinical diagnosis and treatment of endometriosis it was such a crucial moment.

“These guidelines are a testament to organizations such as Endometriosis Australia and patients who have been a powerful force in advocating for women,” Abbott said. “It has required a great deal of work. It is now absolutely clear that this cannot be cured with a single treatment, it is a chronic disease, it is recurrent, it often has a strong genetic component, and it can affect women not only during their reproductive life but throughout their lives.

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

The causes of endometriosis are unclear but, along with the draft guidelines, the Australian government has invested funds for research, education, and the development and implementation of the National Action Plan for Endometriosis. While Australia has lagged behind countries like the UK, which already have clinical guidelines, the significant investment in research and education “means that we are now definitely up to speed,” Abbott said.

Abbott was part of the expert working group that wrote the guidelines and acknowledges that there are still gaps in them.

“Clinical guidelines must be evidence-based, and while we have researchers in areas in everything from diagnostic imaging to surgery, everything takes time to make and filter,” he said. “The guidelines cannot be based on anecdotal evidence. We hope that 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 healthcare for decades to come. “

Much work also remains to be done to empower women, girls and others with a uterus to understand that pain is not normal. Dr Mike Armor, a member of the Endometriosis Australia clinical advisory committee, led a study published Nov. 12 in the Journal of Pediatric and Adolescent Gynecology which surveyed 4,202 adolescent and young Australian women ages 13-25 on basic knowledge of menstrual health and menstrual management.

The survey found that the majority of young women did not seek medical advice for their menstrual symptoms, but instead used information from the Internet (50%) and engaged in self-management, more commonly taking over-the-counter medications such as acetaminophen (51%) or ibuprofen (52%). “Despite having significant dysmenorrhea (menstrual 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 you are not more likely to talk to a doctor. Only 53% of those in school heard of endometriosis. “

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

His investigation identified a number of problems, he said.

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

“Traditionally, menstruation has been taught in the context of sexual health practices and not as a health problem alone. There is minimal content in the syllabus that really explores menstruation. The syllabus is not about pain management or self-care options. “

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

“This national guideline should help with some of these problems, and significant funds have already been allocated to improve education and awareness for GPs and to improve literacy on menstrual health through menstrual education,” she said.

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

Freeman welcomed the guidelines, which are open for comments until December 24But she said she was concerned about some of the clinical language used and the lack of explanation about the procedures. For example, according to the guidelines for the signs and symptoms of endometriosis, doctors must offer a “pelvic exam.”

“We get a lot of feedback from people with endometriosis and one thing that really bothers them, especially young women, is when a procedure is not explained,” Freeman said. “So they are going to have a pelvic exam and they think it could be an ultrasound or an X-ray and they don’t realize that it’s actually an internal exam.

“That can be a big shock if you are not prepared, and if a man examines you and they don’t offer you the option of having a woman do it. It can be very difficult for someone in pain and painful sex. “

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

“Until recently, women were not included in much of the medical world, including research or decisions that affected them,” she said. “That is why it is so important to indicate in advance who this guide is for.

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

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