Justine Atkinson’s journey with uterine fibroids began nearly three years ago, when she became the Executive Director of Fibroid Relief (www.fibroidrelief.org). Before that she was a Vice President in the women’s health practice of a large public relations (PR) agency in Washington, DC. Her PR accounts related to many female issues ranging from incontinence products to menopause drugs to birth control pills – so her current efforts to raise the awareness of uterine fibroids and treatment options for women was a natural fit. While she doesn’t have uterine fibroids, her experience with Fibroid Relief has given her a unique perspective on how fibroids, and treatment options, impact women.
Understanding gleaned from personal contact, national survey
Much of Atkinson’s knowledge of fibroids comes from the women who call her directly to inquire about treatments (and often, vent about their experiences), as well as a national survey of nearly 1,000 women with fibroids that Fibroid Relief conducted back in 2013.
Fibroid Relief worked closely with fibroid experts at the Mayo Clinic, Cleveland Clinic, and UNC Chapel Hill to develop that survey – the results of which were also published in the Journal of Women’s Health and the American Journal of Obstetrics and Gynecology. All were surprised at some of the key findings, which still shape Fibroid Relief’s outreach efforts today:
- Women with symptomatic fibroids are suffering far too long before deciding to get treatment. They reported waiting an average of 3.6 years (!) before seeking treatment from a doctor, with 32% of women waiting more than five years. “We want to change this,” said Atkinson. “Fibroid Relief created a free online ‘conversation starter’ tool to help empower women to stop waiting and start talking with their physicians about their fibroids; we hope this tool will help women get diagnosed earlier and therefore have more treatment options available to them.”
- Most women reported very real fears associated with their fibroids, including being afraid that their fibroids will grow, that they will need a hysterectomy, and that they will miss too much work due to their symptoms – as well as fears regarding relationships, sexual function, body image, loss of control, and hopelessness.
- Women prefer nonsurgical treatment options for their fibroids and many want to preserve their uterus and their fertility. When presented with treatment descriptions, 60% of women rated focused ultrasound as their top treatment choice – and 84% of those under 40 said they prefer a treatment option that does not involve invasive surgery of any kind.
Seek treatment sooner rather than later
Atkinson emphasizes that treating fibroids is not a one-size-fits-all approach – and that if a woman has not yet been diagnosed or treated, it is in her best interest to speak to a health care provider as soon as possible about her symptoms. Atkinson tells women that “a delay in diagnosis can limit the effectiveness of treatment options available to you (due to unnecessary growth of your fibroids, for example).
Women also should know that they have many treatment options available to them today – we’re not in your grandmother’s era of fibroid treatment, when hysterectomies were regularly performed.” Women can download a detailed treatment options chart from Fibroid Relief here.
A vision for a more patient centered approach
“We have a lot of work to do in terms of creating a more patient-centered approach to uterine fibroid treatment. I sincerely want to improve the dialogue about fibroids – woman-to-woman and woman-to-doctor – to not only shorten the time to diagnosis, but also to encourage more information-seeking and decision-making between women and their doctors once their fibroids are detected (only one-third of women in our 2013 survey said they expressed their own personal treatment preferences to their doctors!)”
Atkinson would also love to see all treatment options be available – and affordable – for all women. “It’s clear that women’s voices need to be better heard by not only health care providers, but also by the insurance companies who reimburse the costs of fibroid treatments.”
COMPARE-UF data will facilitate women’s treatment selection
“The concept of this registry aligns so well with Fibroid Relief’s goal of helping women make informed choices about fibroid treatments, so I am truly excited to be part of a project that will arm women with first-of-its-kind data aimed at facilitating treatment selection,” notes Atkinson. “While we can currently provide women with some helpful questions as they navigate different options, such as: what is the recovery time for this procedure? Do I want more children? Is this option routinely covered by insurance?), we do not yet fully understand which treatments may be most effective and for whom. I do hope that there are enough registry participants representing each treatment choice (i.e., from myomectomy to UAE to focused ultrasound) to ensure accurate outcome comparisons for women.”
What is Fibroid Relief?
Fibroid Relief was formed in 2008 and is dedicated to supporting women with uterine fibroids who seek noninvasive treatment alternatives. The non-profit program raises awareness about fibroids and treatments including noninvasive focused ultrasound, and works to promote patient access through educational and advocacy activities. Fibroid Relief is committed to ensuring that all patients have access to the treatment of their choice and aims to contribute to an increased dialogue between patients, physicians and payers, so that patients can make the best individual treatment decisions. Fibroid Relief is a program of The Focused Ultrasound Foundation, which was established in 2006 and is the largest non-governmental source of funding for focused ultrasound research, with the majority of its funding coming from private donations.