For a condition affecting an estimated two-thirds of all women and 80 percent of African American women, there isn’t a lot of public discussion about the impact of uterine fibroids. Three leading voices in the movement for better information, education and options around uterine fibroids – Sateria Venable of the Fibroid Foundation; Linda Blount, MPH, of Black Women’s Health Imperative; and Charlotte Owens, MD, medical director, general medicine, AbbVie and a practicing gynecologist – share thoughts on the mistakes of the past and hope for the future.
What are uterine fibroids?
Charlotte Owens, MD, medical director, general medicine, AbbVie: Uterine fibroids are noncancerous (benign) growths of the uterus that commonly appear during childbearing years. They range in size from almost too small to measure to large bulky sizes that can distort and/or enlarge the uterus. You can have a single fibroid or multiple ones.
While uterine fibroids are very common, not all women will know they have them because they may not have symptoms, or may not recognize they have symptoms. These symptoms can include heavy menstrual bleeding, prolonged menstrual bleeding, bleeding in between periods, frequent periods and irregular periods. Women with uterine fibroids are more likely to have heavy menstrual bleeding, passage of clots and anemia than those without fibroids. And in addition to bleeding symptoms, uterine fibroids can be associated with non-bleeding symptoms such as abdominal/pelvic pressure, urinary urgency and frequency, and lower back pain.
Why is awareness around this condition so important?
Sateria Venable, founder, Fibroid Foundation: My own experience with fibroids opened my eyes to just how badly awareness is needed. I was diagnosed at 26, and have had four surgeries since – and after every surgery, the fibroids grew back within a year. This prompted me to find out what’s normal for this condition, because I think most women don’t know much about it. So I started asking around, and I was shocked at the number of women who said yes, I have that. That was before I even knew how staggering the statistics were. That’s really eye opening for me, the reach of the problem and the desire for information.
Linda Goler Blount, MPH, president and CEO, Black Women’s Health Imperative: The vast majority of black women will experience this. That's important to know. Women may miss work due to their symptoms, so UFs can have significant economic impact especially for women who may not have the kind of jobs that allow for time off. Sometimes, these women are fired for missing work. Awareness is important, so it stops being accepted as normal for women to experience these symptoms, and also to provoke the medical community to help us to address this so that women don't suffer needlessly.
If there are so many women diagnosed with this condition, why don’t we talk about it more?
Goler Blount: Many of the symptoms of uterine fibroids like painful periods, heavy bleeding, and spotting between periods have historically been accepted as normal – “this is what it means to be a woman.” But it isn’t normal. Over generations, we've normalized the abnormal experience because we don't tend to have these kinds of conversations with our physicians.
Venable: We don’t talk about our menstrual cycles, in general. That’s something that’s private. It’s hidden. As girls, we’re taught not to discuss it. And when you have pelvic pain being considered normal, and women in some instances being labeled as “overreacting” than people further retreat and don't want to discuss what's taking place. And for that reason, I don’t think women are not diagnosed readily enough. They aren't seen by a medical professional until they're experiencing some really, really horrible symptoms.
What can be done to improve care for women with uterine fibroids?
Owens: Education about menstrual cycles in general, to help women determine what is normal and what is not. This sounds so fundamental, but without understanding this women may not recognize they have a problem. Women need to be empowered to not only seek care and evaluation, but to know they should be a partner in their care decisions. This means knowing all available options, including non-surgical options, the pros and cons of each option and knowing that they can choose what option best suits them.
Goler Blount: One of the things we suggest is asking, at your pap test, “could I have uterine fibroids?” That will provoke and prompt an action on the part of your care provider.
For care providers, be aware of the research and statistics for the patients you care for – if you’re a physician treating black women, be aware that there’s a good chance they will have uterine fibroids, even if they are not symptomatic.
Venable: The patient-physician relationship should be a partnership. That is really, really key because the patient voice is so important. Patients know themselves better than anyone else. And when you have the opportunity to interact with a caring, skilled physician and collaborate to create a treatment plan where you can then weigh in and help them to understand what you're experiencing, then the treatment is usually just spot on. And that's what our desire is for all women, is to have that level of care, interaction, treatments and relief from their symptoms.
What are your hopes for the future when it comes to uterine fibroids?
Goler Blount: We need more researchers interested in this condition. When you think about research, we also need to consider who's asking the question, what questions are be asked, how the data is being collected and interpreted … We need to be collecting the kind of data needed for more effective interventions, especially among black women.
Venable: When I was severely symptomatic, something as simple as catching a flight was agonizing. Every month you’re dreading your period, and that's just not a good way to live. You’re constantly thinking where am I going to be, what can I wear, what do I need to do, when is my period going to fall, particularly when this happens month after month after month. That turns into years and sometimes decades.
I want the public to understand the size and enormity of this health concern. Symptomatic uterine fibroids affect most ethnicities and women around the world, whose quality of life is severely impacted. And when quality of life for one woman is impacted, it affects everyone around her as well. It's debilitating.
Owens: If you have a migraine headache, people understand that it hurts and you may want treatment. My hope is that likewise, people will finally understand that fibroids can be associated with life impacting symptoms that women do not have to accept as normal.
If we can increase health literacy around reproductive health, I believe it will drive better partnerships with patients, help improve the standard of care for treatment and ultimately empower and improve the quality of life for those in need.