Roughly one of every three women will suffer from abnormal uterine bleeding at some point in their lives, writes advocate and award-winning journalist Holly Bridges in The UnHysterectomy: Solving your Painful, Heavy Bleeding Without Major Surgery. She’s one of them, having suffered with uterine fibroids for almost two years.
Holly is one of the 15 Canadian women who have kickstarted a movement to advocate for timely and appropriate care and treatment of uterine fibroids and other common causes of abnormal uterine bleeding. Although a small group, they represent the universe of women suffering physically, emotionally, socially and economically throughout the whole patient experience, from living with symptoms to diagnosis, treatment and followup. It’s a journey that begins with isolation and fear:
“If someone would have told me in 2007 while I was sitting on my toilet at 2 a.m. being up to my knuckles in blood clots and bleeding, crying my eyes out because I thought I had cancer, that I would be standing here in 2013 with other women who’ve been through the exact same thing as me, it probably would have given me a lot of hope. Because perhaps there would have been somewhere for me to go for information and I would’ve been able to fast-track my treatment. But there was nothing back in 2007.”
Why the wall of silence? Men’s reproductive health is now openly discussed in popular culture—think of that Viagra commercial with the guy dancing his way to work to the tune of “Good Morning” from Singing in the Rain—but menstruation really is “the last taboo” as Holly explains:
This societal bias against menstruation leaves women uncomfortable discussing abnormal bleeding even with another woman. So imagine telling a man.
In my experience, men generally recoil at the mere mention of menstruation. I’m pretty sure they have little desire to hear about painful, heavy menstruation. So for many women, it takes real courage to share their condition with the males in their lives–even those close to them. One of the 15 women took extreme measures to get her husband to understand the severity of her bleeding:
Although this woman can look back and laugh at her own story, at other times sharing the reality of these conditions—in the workplace for example—is no laughing matter, as two other stories illustrate:
The commonality in these two experiences-from the first job to the lost job-is women’s shame and embarrassment. The women behind the fibroid movement hope to foster women’s confidence in speaking up about abnormal bleeding conditions, whether with other women, or with men. As Mazal Kimhi explains below, being open about her own experience, even with her son, can only help other women.
Next time, we’ll look at the huge impact living with fibroids has on women’s lives.
To see all of the Fibroid Movement videos click here.
Illustrations © Leah Silverman, discoverydoodles.com, for Sandpile Inc. July 20, 2013
- Fibroids Movement Series
Women across the country are banding together to advocate for timely and appropriate care and treatment. The uterine fibroid patient advocacy movement is creating an organized and unified patient voice, the first step towards being taken seriously by the medical community—as opposed, Patricia says, “to being seen as a lot of screaming women, which is kind of what we’re taken for now.” More women like Mercy, who had the courage to find her own solution, are connecting to each other, learning from their empowering and motivating experience: Even when a woman is armed with knowledge about abnormal uterine bleeding treatment Read More…
Information is powerful. When you’re ill, it’s your right to be given the information you need to make the best decisions for you and your body. A question is a powerful thing, because it yields information. Ask as many questions as it takes to understand your condition and your treatment options. Ask questions like your life depends on it—as we’ve learned from the stories told by the women leading the uterine fibroid patient advocacy movement, it kind of does. It’s important to ask smart questions. We’ve made it easy for you. Here are the top questions to ask… When you Read More…
Practitioner-patient interactions can represent a potential barrier to timely and appropriate diagnosis and treatment, as we learned in a previous post in this series. In the prolonged and confusing healthcare journeys that some of the 15 women at the forefront of the uterine fibroids patient movement have gone through, practitioners have sometimes diminished their suffering and denied them information: “After a million trips to my GP, he told me to just try putting up with it.” “I asked him about my test results. He said, ‘You wouldn’t understand.’” So how do you advocate for yourself and speak confidently with your Read More…
“I think we can agree on one thing: that we all woke up one morning and whatever the focus of that day was, that changed. What is up with this bleeding? What the heck is up with the clotting?” - Patricia Seven years ago, I had the first real health crisis of my adult life. After several months of denying obvious signs that all was not well with my digestive system, the day came when I couldn’t eat anything without pain. I remember one episode of pain so crippling that I lay crying on my bedroom floor in the fetal Read More…
Roughly one of every three women will suffer from abnormal uterine bleeding at some point in their lives, writes advocate and award-winning journalist Holly Bridges in The UnHysterectomy: Solving your Painful, Heavy Bleeding Without Major Surgery. She’s one of them, having suffered with uterine fibroids for almost two years. Holly is one of the 15 Canadian women who have kickstarted a movement to advocate for timely and appropriate care and treatment of uterine fibroids and other common causes of abnormal uterine bleeding. Although a small group, they represent the universe of women suffering physically, emotionally, socially and economically throughout Read More…
Do you remember the last time you felt you weren’t being listened to? Remember how angry it made you feel? Now imagine that anger multiplied by 15. Back in October, we introduced you to a group of 15 women behind a fledgling patient advocacy movement. They came to Toronto from across Canada this past summer to share their anger over a shared experience: of having their pain diminished or ignored by society and the healthcare system. These women are living with, and suffering from, uterine fibroids (UF) and similar debilitating conditions—and not being heard. In a safe, non-judgmental environment, these Read More…