Women with Fibroids Movement: Part Six—“Sheros” Wanted!

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 options, and knows   how to interact confidently with her doctor, the Canadian healthcare system itself may still throw up barriers to her best treatment outcomes.

So what are women living with these conditions to do? 5 Ways Any Woman Can Be A Shero Being a Shero isn’t complicated. Here are five easy, everyday steps anyone can take to be a Shero:

1. Talk, talk, talk—be a talking Shero. Tell your story to your friends, your family, your boss, your co-workers, your bowling club, your yoga class-anyone you haven’t shared with. You might be surprised by how they respond and by how many women may be [...] continue the story

Women with Fibroids Movement: Part Five—Face to Face with Your Physicians

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 get any kind of diagnosis:

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 [...] continue the story

Women with Fibroids Movement: Part Four—Information is Power

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 physicians? With information! So here’s some information you need.

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:

Surgical Treatments:

ablation focused ultrasound embolization myomectomy dilation and curettage (D&C)

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 [...] continue the story

Women with Fibroids Movement: Part Three—Living With Fibroids “Affects Everything You Do”

“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 position, unable to even drag myself to the emergency department just metres from my home.

Over the next several months, I saw lots of doctors, none of whom could tell me what was wrong with me, and some of whom implied that there was nothing wrong with me. I spent a lot of money on different therapies. I was prodded and poked, and had tubes forced down one end and up the other.

Desperate for relief, I put myself on a very restricted diet. I retreated from social life—believe me, you’ll never understand how much our social lives revolve around food and drink [...] continue the story

Women with Fibroids Movement: Part Two—Menstruation, the Last Taboo

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 [...] continue the story