July marks Fibroid Awareness Month. Fibroids likely affect you or someone you know because 80% of all women have this condition — marked by non-cancerous growths of the uterus.
I am one of those women. I was diagnosed with fibroids in 2015 after ending up in the hospital with dangerously low hemoglobin, causing my heart to become enlarged to the brink of cardiac arrest. All of this havoc on my body was caused by heavy menstrual bleeding due to fibroids. While recovering from the trauma that I experienced, I realized that I am not alone in my struggle.
Because they are so common, many people have normalized fibroids as a natural part of a woman’s lifespan. But in reality, fibroids can significantly impact quality of life and reproductive ability. They can cause debilitating menstrual bleeding, pelvic pain, pregnancy complications and anemia. The annual economic burden of fibroids is estimated to be over $40 million.
For many years, hysterectomies, or the complete removal of the uterus and fallopian tubes with or without the ovaries, have been the mainstay of treatment for women with fibroids. Myomectomies, or removal of the tumors only, are often done to preserve a woman’s fertility.
However, these procedures are not without risks. Up to 20% of women with myomectomies and 14% of women with hysterectomies can have complications. While the risks are lower when done through a less invasive technique called laparoscopy, they can still be substantial. Women who have had hysterectomies also have a higher rate of heart disease later in life. Despite these potential problems, in areas where significant disparities in access and quality of care exist, women may be more likely to be offered hysterectomies than other treatment options.
In the United States, Black women have a threefold higher incidence of fibroids than other women, with 90% of this population having a fibroid at some point during their lifespan. Black women are also more likely to experience fibroid growth at a faster rate and experience complications related to anemia and fertility. Black women report delayed diagnoses, dismissive providers and a lack of culturally competent care. As a result, they may present later, limiting their options for treatment.
The challenges of fibroids are not limited to the United States. Globally, women with fibroids are often diagnosed late due to limited access to gynecologic care and imaging. Alternative non-surgical treatments are significantly underused in places such as sub-Saharan Africa, where women may face significant barriers to care.
The silence around fibroids is rooted in both gender and racial inequities. In the clinical setting, women’s complaints are often minimized, especially when voiced by women of color. Women are often mistreated with aggressive surgical techniques that can be avoided. And when they voice their complaints, their concerns are often ignored or minimized.
It does not have to be this way. And it’s time we make a change.
Worldwide, only 5% of research goes to funding women’s health research, and only a small fraction of this is allocated to studying fibroids. In 2021, Congress introduced the Stephanie Tubbs Jones Uterine Fibroid Research and Education Act, which would provide $150 million to support fibroid research funding. However, the bill has yet to be funded. We not only need this bill to be funded along with other federal investments in research focusing on fibroids, but we also need global organizations to dedicate resources to improving the quality of life for women with fibroids.
We also need to expand education for women to help them recognize the symptoms of fibroids and obtain treatment when needed, so that they do not have to deal with prolonged complications. There needs to be expanded access and provider training for less invasive treatment options for women who want to preserve their fertility or avoid surgery, such as uterine artery embolization or MRI-guided ultrasound.
Finally, we must invest in culturally grounded public health campaigns. The White Dress Project is a national advocacy organization that empowers women with fibroids, promotes advocacy and education, and authored legislation designating the month of July as Fibroid Awareness Month. In Ghana, Fibroid Foundation Africa promotes community-based education efforts to help dispel myths and encourage early diagnosis. In the United Kingdom, patient advocates have called out the “postcode lottery” that makes access to newer treatments a matter of where you live. These are promising signs, but they must be scaled and sustained. We need better research that focuses on improving the lives of women with fibroids, policies that prioritize our needs and health systems that recognize us.
Let’s not just use Fibroid Awareness Month as a social media moment; let’s instead advocate for real change to promote improved education, treatment and research for fibroids. Fibroids must be treated as the serious public health issue they are. We can no longer be silent about a condition that impacts so many of us.
Nkem Osian, a Maryland resident, is the secretary for The White Dress Project and is a senior fellow with the Atlantic Fellows for Health Equity. The opinions expressed here are her own.
