Black Women and Uterine Fibroids
Medical Disclaimer: The information provided to our readers regarding these diseases is not intended to be a substitute for professional medical advice, diagnosis or treatment. The information provided on this website is for general informational purposes only. We strongly encourage our readers to use this information only as a preliminary resource, and we disclaim any liability for the decisions made by anyone based on this information.
FACT: Uterine fibroids occur more often in Black women than in any other ethnic group. Be inquisitive and ask questions to learn more upon your diagnosis of fibroids.
Black Women and Fibroids: A Matter of Reproductive Health Justice
Uterine fibroids are the most common, non-cancerous tumors in women of childbearing age causing symptoms in approximately 25% of women.
You are most likely to have fibroids if you are aged 22 to 50. While fibroids are very uncommon in younger adults under the age of 21, they do sometimes occur in this age group.
Uterine fibroids occur more often in Black women than in any other ethnic group. According to the National Institute of Environmental Health Sciences, 70% to 80% of Black women will develop benign uterine fibroid tumors by their late forties.
Oftentimes, fibroids are under-diagnosed and under-treated in Black women, they tend to occur at younger ages and grow to larger sizes.
In spite of these statistics, there is still a lack of public health attention in regard to this disease. We at RSP recognize the health implications of fibroids as a matter of reproductive health and justice.
On February 5th, 2020 RSP staff members Jimena Chavez and Pamela Guerra had an opportunity to sit down to discuss uterine fibroids with BIDMC OB-GYN and dear friend of RSP, Dr. Yvonne Gomez-Carrion. Dr. Gomez-Carrion provided a wealth of knowledge regarding the diagnosis and treatment of fibroids as well as their disproportionate impact on women of color. > For the full transcript of the interview, click here.
The Basics: What are fibroids?
Uterine fibroids are non-cancerous tumors which can also be called fibromyomas, leiomyomas or myomas. They are growth of muscle within the uterine wall. The size of a fibroid can range from a small seed to larger than a grapefruit before they're discovered. You can just have one fibroid or you can have multiple. They can be located on the surface of the uterus, in the wall of the uterus, or in the uterine cavity.
Fibroids are made of muscle cells and other tissues that grow within and around the muscular wall of the uterus. They are also composed of smooth muscle and connective tissue.
The cause of uterine fibroids is unknown, however, their growth has been linked to the hormone estrogen. As long as a woman with fibroids is menstruating, a fibroid will probably continue to slowly grow.
How do we categorize fibroids?
Fibroids are described by their location in the uterus:
- Myometrial -- in the muscle wall of the uterus
- Submucosal -- just under the surface of the uterine lining
- Subserosal -- just under the outside covering of the uterus
- Pendunculated -- occurring on a long stalk on the outside of the uterus or inside the cavity of the uterus
Fibroids are highly dependent on the hormone estrogen, so the size may increase during pregnancy when estrogen levels are higher. Fibroids tend to shrink after menopause when estrogen levels drop.
What are the symptoms of Fibroids?
While not cancerous, uterine fibroids can cause problems that affect your overall health. Depending on the size, location and number of fibroids, common symptoms can include:
- Pelvic pain and pressure
- Excessive bleeding, including prolonged periods and passage of clots, which can lead to severe anemia
- Abdominal swelling
- Pressure on the bladder, leading to frequent urination
- Pressure on the bowel, leading to constipation and bloating
- Multiple miscarriages or early labor
- Infertility. Research from 2006 indicates that incidence of infertility is higher in African American women than in Caucasian women, and that infertility among Black women has steadily been increasing, whereas it is decreasing among white women (Chandra, and Stephen 2006).
On Thursday, July 30th 2020, Senator Kamala Harris introduced the Uterine Fibroid Research and Education Act which would initiate crucial research and education on fibroids to help women suffering from them obtain the medical care that they need. This act would provide $30 million annually to the NIH to increase research on fibroids and create a uterine fibroids education program under the CDC. The education program would be geared toward spreading information about the risk and prevalence of fibroids, especially regarding the elevated risk for women of color, along with the available treatment options to health care providers.
Medically Recognized Fibroid Treatments
We at RSP firmly believe that it is important to be informed about your fibroids before having a treatment consultation with your healthcare provider. Knowing all of your options from observation to surgery (and everything in between) is very helpful and can guide you in asking informed questions to your gynecologist. It is important to note that there is no “one size fits all” treatment for fibroids; the type of treatment that a woman receives for her fibroids depends on many factors including age, whether or not the woman wants to have children in the future, the location of the fibroids, and the size of the fibroids.
For patients who are asymptomatic or minimally symptomatic, observation is a reasonable option. A change in lifestyle factors, such as diet modifications, can also decrease the size of fibroids and severity of symptoms in certain cases.
These include Aleve, Advil, Ibuprofen, Naproxen
The growth of fibroids is highly dependent on estrogen as a source so physicians will often prescribe hormonal treatments to shrink the fibroids. This can take the form of oral contraceptives for fibroid management, which would include a combination pill or a progesterone only pill. Many physicians may also recommend a non-oral hormonal therapy such as the Depo-Provera shot or a Progesterone IUD. Your provider may prefer to use the IUD for hormonal treatment since it delivers progesterone directly to the affected area.
Gonadotropin Releasing Hormone (GnRH) Analogs
These are also used as a hormonal therapy for Uterine Fibroids. Lupron is the common medication that fits in this category, and is generally used for a short amount of time to shrink the fibroids before surgical resection.
GnRH antagonists are another common hormonal treatment for fibroids. These are medications that block estrogen production, starving uterine fibroids of estrogen and causing them to shrink. Mifepristone is a commonly used GnRH antagonist for the treatment of fibroids.
MINIMALLY INVASIVE PROCEDURES
Magnetic Resonance-Guided Focused Ultrasound
This is a minimally invasive procedure. It uses high-energy ultrasound waves to generate heat at a specific point to destroy uterine fibroid tissue and relieve symptoms. The MR scanner allows the Interventional Radiologist to see where the fibroid is and to monitor temperature changes inside the body. Only a small spot is treated at a time and the process is repeated until the fibroid is destroyed. This procedure is limited to symptomatic women not interested in childbearing who have only a few fibroids.
Uterine Fibroid Embolization
Uterine artery embolization (UAE), also called uterine fibroid embolization (UFE), is an endovascular procedure done through the arterial system. It is non-surgical and minimally invasive. It does not require general anesthesia- the patient’s groin is numbed and the patient is sedated, but still conscious enough to respond to questions. This is a new uterine fibroid treatment which is designed to cut off the blood supply to the fibroids. It is safer than uterine fibroid treatments that require surgery and an effective alternative for some women who strongly desire to avoid hysterectomy. This procedure is done in women who do not wish to become pregnant in the future.
Hysteroscopic Resection of Submucosal Fibroids
During this procedure, a hysteroscope (a long, thin tube with a lens and light on the end of it) is passed into the uterus through the vagina. The physician uses this to look inside of the uterus for any visible submucosal fibroids and then removes them using a wire loop. No incision is necessary. The patient generally only has to stay in the hospital for a few hours after the procedure. Hysteroscopic resection can only be used for fibroids that are small and accessible, which is why it is limited to the submucosal type.
Endometrial Ablation with Hysteroscopy
The physician places a scope through the cervix into the uterine cavity to burn and scrape the lining of the uterus. The procedure also is used to burn and cut out uterine fibroid tumors that can be reached through the scope. The removal of the lining (endometrial ablation) stops bleeding, but not all uterine fibroid tumors can be removed with this technique. Like a hysterectomy, this fibroid treatment causes permanent infertility.
Myomectomy (Removal of Uterine Fibroids)
Myomectomies, which is the surgical removal of the fibroids, can be done either laparoscopically or through an incision in the lower abdomen. Minimally invasive surgeries, including the laparoscopic procedure, are usually not as effective if there are many fibroids. Because this is often the case for Black women, your physician may suggest a myomectomy through an incision.
When done laparoscopically, this procedure warrants 0-1 days in the hospital but if done through a larger abdominal incision, the patient is usually in the hospital from 1-3 days. Myomectomy can preserve fertility but carries the additional risk of recurrence.
Myolysis uses a heat source to cauterize (or burn) the blood supply to the fibroids using laparoscopic surgery. Without a blood supply, the fibroids will shrink. Myolysis is not recommended for women who hope to get pregnant in the future.
A hysterectomy is the surgical removal of the uterus. A supracervical hysterectomy (or partial hysterectomy) is a removal of the uterus above the cervix while a total hysterectomy is the removal of the uterus and the cervix. The uterus is generally removed through an incision in the abdomen, but sometimes a hysterectomy can be done through the vagina. Pregnancy is impossible after a hysterectomy. If done laparoscopically, the patient either goes home the same day or stays overnight in the hospital. If a hysterectomy is done through a larger abdominal incision, the patient generally stays in the hospital for one to two nights. A hysterectomy is a major surgery and usually requires six weeks of recovery time.
Uterine Fibroid Support Resources
UTERINE FIBROID REMOVAL SUPPORT GROUP
This is a facebook group with more than 20,000 members for people who want support around medical interventions for fibroid treatment. > learn more
UTERINE FIBROID SUPPORT & RESOURCE GROUP
This is another facebook group with over 11,000 members. This is for people who want to learn more about the symptoms and treatment of fibroids and also discuss their personal stories. > learn more
This is a website specifically for women who have had a hysterectomy. It includes a support forum to discuss personal experiences with hysterectomy and many different resources as well. > visit the site
COMPARING OPTIONS FOR MANAGEMENT: PATIENT-CENTERED RESULTS FOR UTERINE FIBROIDS (COMPARE UF)
The goal of this research study is to compare methods for managing fibroids to determine which are the most effective. These researchers are also looking to see which factors make the specific management methods more effective and also which factors make Black women more susceptible to developing fibroids. > learn more
In August 2018, KCRW news put out an inspiring podcast that illustrates the journey of KalaLea, a young Black woman suffering from fibroids. KalaLea explains how she lived with terrible pain and heavy bleeding from the time she got her first period well into her 30’s before any medical professional told her it was abnormal. She explains how she had to learn to be her own advocate for her health to take control of her life and gives advice to other Black women who are suffering from fibroids. The podcast, titled “Bleeding” is part of the series Bodies. > listen now
THE WHITE DRESS PROJECT
The White Dress Project is a non profit based in Georgia, with chapters in various states across the country. The mission of the White Dress Project is “to galvanize support and promote national awareness about the fibroid epidemic among women domestically and globally through education, research, and advocacy.”
The organization was named as such because many women with fibroids do not feel comfortable wearing white due to excessive bleeding often associated with fibroids. The White Dress Project works to make women with fibroids feel empowered and has the vision that no woman will ever have to suffer in silence from them. > learn more
THE FIBROID FOUNDATION:
The Fibroid Foundation’s mission is: “Be the voice of women living with Fibroids. Create and support initiatives to find a cure for fibroids. Advocate for ongoing funding of patient sensitive fibroids research. Erase the ‘Stigma of Silence’ around women’s menstrual health. And, Minimize treatment disparities with layered patient support.” > learn more
The organization was founded by Sateria Venable, who was diagnosed with fibroids in her 20’s and subsequently recommended for a hysterectomy. She wanted to preserve her fertility so was prompted to explore other treatment options which led her to founding The Fibroid Foundation. She is a patient advocate and has created an extensive network within the medical community.
CARE ABOUT FIBROIDS
CARE About Fibroids is a Washington, DC-based non profit that works to elevate the importance of uterine fibroids as a women’s health issue and drive change. They partner with many well-respected women’s health advocacy and policy-focused organizations, including the Black Women’s Health Imperative.
The mission of CARE About Fibroids is to “mobilize a broad spectrum of women’s health advocates to build greater awareness of uterine fibroids and create a sense of urgency around the need for improved diagnosis, expanded and better treatment options, and enhanced patient access to care. Specifically, the organization is committed to four pillars of purpose: Community, Action, Research, Education”. > learn more
YVONNE GOMEZ-CARRION, MD, F.A.C.O.G.
Leader of the Ob/Gyn Resident Surgical Service at Beth Israel Deaconess Medical Center
Office Phone Number: (617) 667-2952
NYIA NOEL, MD, MPH
Director, Minimally Invasive Gynecologic Surgery at Boston Medical Center
Office Phone Number: (617) 414-2000
For more information about uterine fibroids, please contact the following organizations:
- Office on Women’s Health — Phone: 800-994-9662 (TDD: 888-220-5446)
- American College of Obstetricians and Gynecologists — Phone: 202-638-5577
- Center for Uterine Fibroids — Phone: 800-722-5520
You can read more about fibroid research & information here:
- Centers for Disease Control and Prevention — United States Cancer Statistics
- National Institutes of Health - Chandra, A. Stephen E. H. (2006). Declining estimates of infertility in the United States: Fertile Sterile. Vol. 86:516–23.
- Gomez-Carrion, Yvonne, Personal Interview. 16 July 2020.
- "Uterine Fibroids Treatment Option: Hysteroscopic Myomectomy". Uclahealth.Org, Uterine Fibroids Treatment Option: Hysteroscopic Myomectomy.
- Wise, A. Lauren et al. 2007. Perceptions of racial discrimination and risk of uterine leiomyomata. Journal of Epidemiology. Vol. 18;47-757.