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.’”

hysterectomy 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:

Non-hormonal Treatments:

Hormonal Treatments:

 

Surgical Treatments:

Before you decide on any course of treatment, you should ask yourself these 5 questions:

  1. Do I want to have children?
  2. Do I want to prevent pregnancy?
  3. How bad are my symptoms?
  4. Are my symptoms affecting my quality of life?
  5. 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

 

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    Posted on by Lisa Ferguson with Zal Press

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