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.’”
You have other options besides “the H word.”
Uterine fibroids account for more hysterectomies in Canada than any other condition. As patient advocate Holly Bridges explains, “Doctors haven’t been taught to do anything but hysterectomy” to treat fibroids. That’s unfortunate, because multiple, minimally invasive treatment alternatives now exist for conditions that cause excessive bleeding. Here’s just a sampling of treatments experienced by only five of these women:
Before you decide on any course of treatment, you should ask yourself these 5 questions:
- Do I want to have children?
- Do I want to prevent pregnancy?
- How bad are my symptoms?
- Are my symptoms affecting my quality of life?
- What level of invasiveness am I comfortable with?
Just the process of considering options, especially hysterectomy, is bound to bring up even more questions: Am I giving up? Will I still be a woman? Will I still feel sexy? The best way to answer such emotional questions is by learning about other women’s experiences.
Your practitioner is not your only source of expertise.
If you’re not satisfied with your practitioner’s communication or sharing of resources, empower yourself by finding information independently:
Before you act on information you find—especially if it’s from the internet—think critically about whether it is reliable, credible, and evidence-based (for tips, see our Survival Guide: How to Survive and Thrive During Hospital Stays and Long-Term Care).
We suggest that you start with these three terrific resources for every woman confronting abnormal bleeding conditions:
Besides being a fibroids survivor and patient advocate, Holly is an award-winning journalist. In this, her first book, she demystifies minimally invasive alternatives to hysterectomy. Another great resource Holly offers is My Flow Chart™, a tool to help you keep track of your heavy bleeding—frequency, length and volume—and pain, and their impact on your quality of life. Share this with your doctor!
Patricia Lee is using her experience as an internet entrepreneur to create community and build the fibroids patient advocacy movement. The network’s Facebook group (with over 4,500 members!) and CANfib.ca website allow women across the country to share knowledge and ideas.
The Society of Obstetricians and Gynaecologists of Canada’s clinical practice guidelines cover the range of treatment options, from Advil to hysterectomy, in the sequence in which they should be considered.
This movement is all about collaboration, so please share if you’ve got something to add to this list.
Once you’re armed with information, you have the power to be a collaborative partner in your own healthcare rather than a “puppet”:
In the next post in this series, we’ll get really specific about how you should expect to be treated in the practitioner-patient relationship and the important questions you should ask.
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…