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…
- What is my diagnosis? Please explain it thoroughly to me in plain language.
- What are the treatments/medications? What are they composed of and why? Are there any risks associated with the treatment?
- Are there any alternative treatments?
- Where can I get more information?
- What are the planned procedures?
When you’re told you need a hysterectomy:
- What are the treatment guidelines in our country, and more to the point, how can those guidelines be applied to me?
- When are hysterectomies indicated under these guidelines? Do I have any of those conditions?
- What are the treatment options offered at my hospital besides hysterectomy?
- How can I find a doctor who can perform these other procedures?
- If I decide to have a hysterectomy, will hospital administrators review my case to ensure it meets the criteria?
Before choosing a surgeon for removing fibroids:
- How many procedures do you perform in a week?
- How do you remove the fibroid?
- How many complications do you have and how do you deal with these?
- Would you be prepared to tape the surgery so I can see it afterwards?
Just as important as asking the right questions is being able to understand the answers. Ask questions when you are ready—not when you are upset, as you might be after hearing an unexpected diagnosis, for example, or when you are in pain, or tired, or confused, as you might be if you are anemic from heavy bleeding. In those states you may accept the first treatment offered, and it may not be the right one for you and your body.
You might consider bringing a friend or family member along to appointments as another set of ears.
Your healthcare provider should help you understand. Health education specialist Kathy Kastner’s guidelines for best practice in patient education (included in our Survival Guide: How to Survive and Thrive During Hospital Stays and Long-Term Care) make that clear. If your practitioner doesn’t respond to your questions with respect, or won’t discuss different therapy options, it’s time to do what women love to do: go shopping.
Different practitioners will offer different perspectives and different outcomes. You don’t have to be limited to any one practitioner’s training, practice, or experience. If an opinion, even if it’s from a practitioner you trust, doesn’t offer a satisfying path to a cure, or even relief, get another one:
“We got it in our heads that we’d never have children. Then a new doctor moved into town and said, ‘Guys, I can fix this. This is what I do.’ He performed a myomectomy and then six months later, boom, I’m pregnant.”
“I had to do the shopping around for a second gynecologist who finally was able to help me. He performed two procedures. My bleeding stopped and my suffering stopped.”
Remember, it’s your right to know about your health and your care.
In the next, and final, post in this series, we’ll look at how you can effect real change for yourself and for other women.
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…