Raising Awareness: Why Fibroids Deserve More Attention and Research

Raising Awareness: Why Fibroids Deserve More Attention and Research

Uterine fibroids are among the most common health conditions affecting people with a uterus during their reproductive years, yet they often remain under-diagnosed, under-treated, and underfunded in research. These benign tumors can profoundly affect quality of life—causing heavy bleeding, anemia, pelvic pain and pressure, fertility challenges, and missed work—while disproportionately impacting Black women. Greater awareness, better access to care, and sustained research investment can change that trajectory.

What Are Uterine Fibroids?

Uterine fibroids (leiomyomas) are noncancerous growths of smooth muscle tissue that develop in or on the uterus. They vary widely in size and number and can grow within the uterine wall, project into the uterine cavity, or extend outward from the uterus. Many fibroids cause no symptoms, but when they do, common issues include:

  • Heavy or prolonged menstrual bleeding (sometimes with clots)
  • Pelvic pain, pressure, or a sense of pelvic fullness
  • Urinary frequency or constipation from pressure on nearby organs
  • Pain with sex
  • Fatigue due to iron-deficiency anemia

According to the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), by age 50 up to 70% of white women and more than 80% of Black women may develop fibroids. Many never know they have them; others experience life-altering symptoms that disrupt work, school, caregiving, and social life.

The Scope of the Problem—and Who Is Most Affected

Fibroids are a major women’s health and public health issue:

  • High prevalence and early onset: Fibroids are common across all racial and ethnic groups but occur earlier, grow larger, and are more numerous on average in Black women.
  • Quality-of-life toll: Heavy bleeding can lead to anemia, fatigue, and dizziness. Chronic pelvic pain and pressure can impair sleep, sexual health, and daily functioning.
  • Reproductive impact: Depending on their size and location, fibroids may contribute to difficulty conceiving, pregnancy complications (such as pain, malpresentation, or risk of cesarean), and postpartum hemorrhage risk. Management must be individualized based on symptoms, fertility goals, and future pregnancy plans.
  • Health equity concerns: Structural inequities in healthcare access, dismissal of menstrual symptoms as “normal,” and limited access to specialty care contribute to delayed diagnosis and higher rates of invasive treatments like hysterectomy among Black women.

Why Fibroids Deserve More Research

Despite their prevalence, key questions remain:

  • What causes fibroids? Hormones (estrogen and progesterone) and the extracellular matrix are implicated, but the precise triggers of fibroid initiation and growth are not fully understood.
  • Genetics and biomarkers: We need better understanding of genetic drivers and reliable biomarkers to predict which fibroids will grow, which will cause symptoms, and who is at risk for recurrence after treatment.
  • Environmental and lifestyle factors: Emerging research explores the role of environmental exposures (including endocrine-disrupting chemicals), diet, and stress. The National Institute of Environmental Health Sciences (NIEHS) supports studies like the Study of Environment, Lifestyle, and Fibroids (SELF) to clarify these links.
  • Treatment innovation and personalization: We need safer, fertility-preserving options, noninvasive therapies with durable results, and data that reflect diverse populations. Trials must include participants who have historically been underrepresented in research.

Current Treatment Options—and Where Gaps Remain

Care should be individualized with shared decision-making, taking into account symptom severity, age, fibroid characteristics, and fertility goals. Options include:

Watchful Waiting

For asymptomatic or minimally symptomatic fibroids, regular monitoring may be appropriate.

Medications

  • Nonhormonal therapies: Tranexamic acid can reduce heavy menstrual bleeding on days of flow; NSAIDs may help with cramps but typically have limited effect on bleeding.
  • Hormonal options: Combined hormonal contraceptives or progestin-only methods (including the levonorgestrel-releasing intrauterine system, when the uterine cavity is not significantly distorted) can reduce bleeding for some patients.
  • GnRH pathway therapies: Oral combinations that modulate gonadotropin-releasing hormone activity are FDA-approved to manage heavy menstrual bleeding associated with fibroids. These include elagolix with add-back therapy and relugolix combination therapy, which can reduce bleeding and shrink fibroids in some patients. Duration and bone health monitoring matter; discuss risks, benefits, and eligibility with a clinician.

Procedural and Surgical Options

  • Uterine artery embolization (UAE): A minimally invasive radiologic procedure that reduces blood flow to fibroids, shrinking them and relieving symptoms. Fertility outcomes after UAE are variable; patients desiring pregnancy should discuss alternatives.
  • Myomectomy: Surgical removal of fibroids via hysteroscopic, laparoscopic, or open approaches, preserving the uterus. It is the preferred surgical approach when future pregnancy is desired, though fibroids can recur.
  • Radiofrequency ablation (RFA): Uses heat to destroy fibroid tissue; performed laparoscopically or transcervically. Fertility data are still evolving.
  • MRI-guided focused ultrasound (MRgFUS): Noninvasive thermal ablation for select candidates; access can be limited.
  • Hysterectomy: Definitive treatment that removes the uterus, eliminating fibroids and menstrual bleeding; not appropriate for those who wish to preserve fertility.

Important safety note: The U.S. Food and Drug Administration (FDA) advises caution with laparoscopic power morcellation during hysterectomy or myomectomy due to the risk of spreading unsuspected uterine sarcoma. When morcellation is considered, the FDA recommends using a tissue containment system and careful patient selection.

Closing the Gap: What Greater Attention Looks Like

  • Increased federal and philanthropic research funding: Prioritize studies on etiology, prevention, noninvasive therapies, recurrence prevention, and patient-reported outcomes.
  • Equitable access and workforce training: Expand access to comprehensive fibroid care, including minimally invasive options, in underserved communities. Train clinicians to recognize and address heavy menstrual bleeding and pelvic pain without bias.
  • Inclusive clinical trials: Ensure trials enroll diverse participants reflective of the populations most affected, and report outcomes by race, ethnicity, and age.
  • Data transparency and shared decision-making: Provide clear, balanced information on benefits, risks, side effects, and reproductive implications of each option.
  • Public awareness: Normalize conversations about menstrual health so symptoms are not dismissed as “just a heavy period.”

What You Can Do Right Now

  • Track menstrual cycles, bleeding volume (e.g., number of pads/tampons, presence of clots), pain, and fatigue.
  • Bring your symptom log to appointments and ask about the full range of options suitable for your goals.
  • Seek a second opinion if you feel your concerns are minimized.
  • Explore clinical trials and research registries, including studies funded by NIH and NIEHS.
  • Share accurate information from trusted sources with friends and family.

Fibroids deserve the same level of attention we give other common conditions that erode quality of life and contribute to inequities. By raising awareness and investing in rigorous, inclusive research, we can deliver earlier diagnosis, safer therapies, and better outcomes for all.

Trusted Resources and References

  • NIH NICHD: Uterine Fibroids – Condition Information: https://www.nichd.nih.gov/health/topics/uterine/conditioninfo
  • U.S. Department of Health and Human Services, Office on Women’s Health: Uterine Fibroids: https://www.womenshealth.gov/a-z-topics/uterine-fibroids
  • American College of Obstetricians and Gynecologists (ACOG) – Patient FAQ on Uterine Fibroids: https://www.acog.org/womens-health/faqs/uterine-fibroids
  • FDA – Safety Communication on Laparoscopic Uterine Power Morcellation: https://www.fda.gov/medical-devices/safety-communications/updated-laparoscopic-uterine-power-morcellation-hysterectomy-and-myomectomy-fda-safety-communication
  • FDA – Approvals for oral therapies that manage heavy menstrual bleeding due to fibroids (e.g., elagolix combination, relugolix combination): https://www.fda.gov/news-events/press-announcements/fda-approves-therapy-manage-heavy-menstrual-bleeding-associated-uterine-fibroids and https://www.fda.gov/drugs/news-events-human-drugs/fda-approves-first-oral-treatment-women-experiencing-heavy-menstrual-bleeding-associated
  • NIEHS – Uterine Fibroids and the SELF Study: https://www.niehs.nih.gov/health/topics/conditions/uterine-fibroids

Disclaimer: This article is for educational purposes and does not substitute for professional medical advice. Speak with a qualified clinician about diagnosis and treatment options tailored to your situation.



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