Valérie Bidégaré had to wait six years before being diagnosed with endometriosis. Tracey Lindeman, 24. Years of being told that this suffering has taken root in their heads. Physiotherapist, Caroline Arbor meets women every day who are told that it is normal to have pain. By chance, she has each published an essay in recent months denouncing the trivialization of female pain. A random ? Maybe not.
Valérie Bidégaré and Tracey Lindeman both suffer from endometriosis, a disease characterized by the development of tissue similar to the uterine lining outside the uterus and which can cause sharp pain during menstruation and during sexual intercourse, heavy bleeding and chronic pelvic pain, among others. It is not a rare disease. According to the World Health Organization, it affects nearly 10% of women and girls of reproductive age, or 190 million people worldwide. But its diagnosis is complex, as with polycystic ovary syndrome, which affects between 5 and 10% of women.
In BLEED – Destroying Myths and Misogyny in Endometriosis Care, Tracey Lindeman compares endometriosis to a black box: “No one knows what’s going on inside that box, and it seems like no one ever will. »
For many women, this complexity results in late diagnosis. Years of waiting thinking this pain is normal or being told it is, while the disease sets in and spreads.
It’s in your head is also the title of Valérie Bidégaré’s essay, echoing a sentence that the former journalist, now editor and blogger, was told by her doctor after yet another battery tests showed nothing abnormal.
Periods so heavy that she always needed a spare kit at work, and sore that she had to take time off, pain during sex and when running: for her, something was wrong . It took the arrival of a women’s health specialist at her family medicine clinic for her to get a diagnosis and effective treatment to relieve her symptoms (in her case, a progestogen coupled with physiotherapy treatments). .
For Tracey Lindeman, a freelance journalist from Montreal who now lives in the Outaouais, it was by moving that she was able to meet a gynecologist ready to perform the hysterectomy that she had been refused for several years, despite her deep certainty of not wanting children. With stage 4 endometriosis and adenomyosis (a uterine disease), she felt like she had tried everything to relieve her symptoms: birth control pills, Naproxen, Mirena IUD. For her, surgery was the last option.
She obtained it in June 2020, then decided to take up the pen. BLEED, published in English last March, should soon be translated into French. If her book sees the light of day this year, at the same time as those of Valérie Bidégaré and Caroline Arbour, it is because a door is opening in the public space to talk about this subject, believes Tracey Lindeman.
In this personal story tied to a major journalistic investigation, she tells the story of about forty women for whom the health system has failed. Cis women, transgenders, black women, aboriginals, fat women and others less. “I waited 24 years,” she recalls. There are others who don’t have an answer yet. There are younger people who have already been diagnosed. It’s different for everyone. It depends on your region, your appearance, your race, your sexual orientation. These are all factors that influence care. Why can’t everyone have access to ideal health? »
Misunderstanding of the female body, clinical trials on men, belief that the womb affects character traits, making women more emotional and less rational: the minimization of female pain has deep roots in history of medicine. “These myths have remained well anchored in society and in the teaching given to future doctors, underlines Valérie Bidégaré, based on the interviews she conducted with health specialists, an anthropologist and a historian. . The woman has always been left out. It has to change. The feminization of the profession will not solve everything. “A woman told me it was all in my head,” she says.
“We have centuries and centuries of catching up to do in women’s health,” agrees Caroline Arbour, physiotherapist specializing in perineal and pelvic health and author of Inhabiting Our Bodies. There is a big awareness to be made on the side of doctors and all health professionals. Pain also needs to be better understood: “We are not trained in pain or simply to understand the science of pain, regardless of disease. I learned a little during my journey, but a lot while writing this book.”
In her essay, she dissects the workings of pain and argues that normalizing it contributes to feeding the vicious circle. “We live in a culture of female pain,” she says bluntly. “We tell little girls that having a period is going to hurt, giving birth is going to hurt, making love is going to hurt, as if everything we’re going to experience that’s feminine will necessarily open the door. to pain. »
It is from a young age that these myths must be deconstructed, she thinks, and not only between women. Men should also be part of the conversation, believes the mother of two boys.
“There are really a lot of things to correct, but we can start by telling young people that this is not normal, adds Tracey Lindeman. If I had heard that when I was 14 and not 30, I wouldn’t have wasted so much time. The journalist points out that one in six women with endometriosis have lost a job, data from an Australian study published in 2021. “I missed at least 100 classes during my year of secondary 5. C is economical and systemic. But in his eyes, certainly not normal.