It can be concerning or even scary to hear the “F-word” - fibroids, that is - from your medical provider.
For many individuals, hearing the word fibroids comes with a lot of uncertainty on the what, why, and how you got them. The biggest question you’ll likely have is, “what does this diagnosis mean for my life”?
Whether you’ve recently heard “the F-word” from your provider or you searched it up due to concerns around some recent symptoms you’ve been having, we got you.
Aisle spoke with Charlotte D. Owens, M.D., FACOG, former Therapeutic Area Lead for Women’s Health, U.S. Medical Affairs at AbbVie, and Adjunct Assistance Clinical Professor of Obstetrics and Gynecology at the Morehouse School of Medicine. She informed us of many critical considerations on what to do when you explore the possibility of fibroids or are adjusting to a diagnosis.
WTF - What the Fibroids!?
According to Owens, fibroids are non-cancerous tumors of the uterus (also called leiomyoma or just "myoma"). They are also the most common type of benign pelvic tumor in individuals with a uterus. Somehow they are extremely common but also severely under-discussed.
"While more research is needed to understand what can cause uterine fibroids to form, we know they are estrogen and progesterone-dependent and more common than many people think. Uterine fibroids occur in up to 70 percent of [white] and up to 80 percent of Black Americans with a uterus by the time they reach the age of 50,”, says Owens.
While the specifics of what causes them are unknown, experts are exploring a mix of potential hormonal and genetic factors, including exposure to trauma.
The Office on Women's Health notes there are three groups of fibroids named based on where they grow in the uterus:
- Submucosal (sub-myoo-KOH-zuhl) fibroids grow into the uterine cavity.
- Intramural (ihn-truh-MYOOR-uhl) fibroids grow within the wall of the uterus.
- Subserosal (sub-suh-ROH-zuhl) fibroids grow on the outside of the uterus. A fourth classification - pedunculated (pih-DUHN-kyoo-lay-ted) fibroids grow out of the surface or into the uterine cavity.
Risks factors and considerations
Fibroids risk peaks around 30 - 40 and begin to dip post-menopause, making age a matter of concern. Having a relative who had a diagnosis also increases one’s risk.
Owens notes there are pervasive racial disparities in the presentation, existence, and treatment of fibroids. "We know there is an increased incidence of uterine fibroids among African American patients, with rates that are two to three times greater in African American patients than in white patients in America. African American patients often develop fibroids a decade earlier, specifically in their twenties, than white [patients] and tend to experience more severe symptoms and larger fibroids."
We’re still waiting for data to address the role of other lifestyle factors, like diet, weight, and exposure to environmental toxins. It’s also clear that research is lacking on how this condition impacts Asian, Latinx, and other ethnic groups.
You can have one or multiple fibroids ranging in size. The larger they are the more likely you are to have symptoms. Fibroids impact different people in different ways. Some individuals with fibroids have no symptoms at all. However, Owens notes that the most common symptom is heavy, disruptive periods, pelvic pain, discomfort and/or pressure. Naturally, this varies based on the individual and the size and location of the fibroid(s).
She notes they can also cause emotional or mental distress for individuals who are managing uterine fibroids and the long-term and repetitive “fibroids-associated symptoms” they cause. Other health concerns like anemia and subsequent fatigue are a possibility. The discomfort associated with fibroids can eventually impact professional, familial, and social responsibilities.
“Individuals with symptomatic fibroids report impacts on relationships and intimacy, employment – including absenteeism and presenteeism – and an overall reduced quality of well-being regarding their health, Owens notes.
Fibroids that contribute to infertility or present complications during pregnancy and delivery might concern individuals considering having children.
Exploring treatment options
Owens says that everyone battling fibroids won’t require treatment, as often they are asymptomatic. Still, it’s essential that individuals who need help have access to a provider who can help them determine the best treatment plan for their circumstances.
"There are options available based on your symptoms, medical history, and personal goals. It is important to have an open conversation with a healthcare provider to understand what choices may be best for you, and what an optimal treatment plan might be based on your specific needs."
There are medication-based and surgical interventions, but individuals must decide for themselves which fits into their life context.
Fibroids are the leading cause of hysterectomy, a permanent, irreversible surgical removal of a person’s uterus, in the United States. It’s infallible as a solution to fibroids risks, but it also eliminates the possibility of becoming pregnant.
Owens also notes that recent data suggests long-term complications of removing one’s uterus, like cardiovascular and metabolic conditions. Individuals uninterested in a hysterectomy may decide their lifestyles better align with other surgical interventions, like endometrial ablation, myomectomy, uterine artery embolization, and magnetic resonance imaging (MRI)-guided focused ultrasound.
She says there are also many medication treatment options, including oral contraceptives, progestins, and gonadotropin-releasing hormone (GnRH) agonists and antagonists. And mentions Oriahnn, the first, non-surgical, oral medication developed specifically to treat heavy menstrual bleeding associated with uterine fibroids in premenopausal patients, which the U.S. FDA recently approved.
If fibroids are so common and there are so many options out there, it’s worth asking: Why are so few people getting treatment?
Owens notes the average diagnostic delay in patients that are ultimately diagnosed with uterine fibroids can be more than three and half years.
The first reason is many individuals don’t realize heavy prolonged periods are a cause for concern. Both menstrual stigma and lack of discussion present barriers to knowing something is wrong.
“Potential reasons for this delay may include patients thinking, or being told, their excessive bleeding or other symptoms are normal, not understanding what a normal period flow is, not knowing enough about uterine fibroids or their risks; and trying to ignore symptoms altogether due to fear and uncertainty,” says Owens referencing patient self-reports.
It’s also impossible to think about treatment access without considering structural barriers, like limited access to quality providers and insurance, and systemic barriers like racism, sexism, and transphobia. All of these can make it harder to discuss one’s issues, be informed about options, and fund care. The rising number of women seeking fibroids treatment in the emergency room might be the first step towards seeing how having a relationship with a provider or insurance coverage impacts treatment.
Research is lacking, and it’s not intersectional to pinpoint the unique factors that impact one’s risks and experience with fibroids. "Our support for uterine fibroid patients must be inclusive and consider all people – anyone with a uterus is at risk of developing fibroids, regardless of their gender identity, race, or health history, says Owens.
Increasing research requires an increase in funding. Thankfully, in the H.R.2007 - Stephanie Tubbs Jones Uterine Fibroid Research and Education Act of 2021 was introduced this year in hopes of making that shift.
Know you deserve quality care
If you’re experiencing the symptoms that align with fibroids or any medical condition, advocacy resources available to hear first-person perspectives. If it feels more comfortable to start by talking with friends and family, that’s fine! CARE About Fibroids, The Fibroid Foundation, and The White Dress Project are some of a growing number of organizations available to support individuals adjusting to life with fibroids.
It might feel awkward discussing reproductive issues with others - especially if you don’t have an established relationship with a provider. But it’s vital that you do. Remember, you’re the expert on your body. If something feels off, you deserve quality dignified medical care regardless of your race, gender identity, and income/insurance status.
"Remember, every patient has the power to approve or decline the care they will receive – before agreeing to a care plan, make sure you have discussed all your options, feel like you understand your diagnosis, understand the pros and cons of different treatments, and are comfortable with your decision”, says Owens.
A. Rochaun Meadows-Fernandez is an award-winning writer, speaker and activist working to amplify Black women's voices in the mainstream dialogue, especially within conversations on health and parenting. She is also the founder of the #FreeBlackmotherhood movement.
Photo by Lynne Bookey on Scopio