Black Women and Uterine Fibroids
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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 uncommon in 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.
Black women are often underdiagnosed and undertreated when it comes to fibroids, and their fibroids tend to occur at younger ages and grow to larger sizes.
Despite these statistics, there is still a lack of public health attention to this disease. The health implications of fibroids are 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, 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. If a woman with fibroids is still menstruating, it is possible for the fibroids to 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 bowels, leading to constipation and bloating
- Multiple miscarriages or early labor
- Research from 2006 indicates that incidence of infertility is higher in African American women than in Caucasian women.
On Thursday, July 30th 2020, Senator Kamala Harris introduced the Uterine Fibroid Research and Education Act which would initiate crucial research and education to help women suffering from fibroids 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. The bill did not pass the House of Representatives, but a similar bill, called Stephanie Tubbs Jones Uterine Fibroid Research and Education Act of 2021 was introduced more recently in effort to put these important initiatives to work in the US.
Medically Recognized Fibroid Treatments
It is important to be informed about your fibroids before having a treatment consultation with your healthcare provider. Knowing all your options from observation to surgery (and everything in between) is critical and can guide you in asking informed questions of your gynecologist. It is important to note that there is no one size fits all treatment for fibroids; the type of treatment a woman receives for her fibroids depends on many factors including age, the size and location of the fibroids, and whether the woman wants to have children in the future.
For patients who are asymptomatic or minimally symptomatic, observation is a reasonable option. In certain cases, a change in lifestyle factors, such as diet modifications, can also decrease the size of fibroids and severity of symptoms.
These include naproxen and ibuprofen.
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 a 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 in that 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 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 with only a few fibroids who are not interested in having children afterwards.
Uterine Fibroid Embolization
Uterine fibroid embolization (UFE), also called uterine artery embolization, is a non-surgical and minimally invasive procedure. The patient receives mild to moderate sedation (some require general anesthesia) and a local anesthetic is used. A catheter is inserted into the femoral artery to apply medications and synthetic materials to block uterine arteries. This is designed to cut off the blood supply to the fibroids. It is safer than surgical treatments and an effective alternative for women who want to avoid a hysterectomy but also do not plan to have children 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 has to stay in the hospital for only 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.
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, the patient may go home the same day or the next day, but if done through a larger abdominal incision, the patient is usually in the hospital from one to three days. Myomectomy can preserve fertility but carries the 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 35,000 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 19,000 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 hysterectomies, and it has many different resources as well. > visit the site
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 30s 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 she also 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 nonprofit 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 should ever have to suffer in silence from them. > learn more
THE FIBROID FOUNDATION:
The Fibroid Foundation’s mission is to “be the voice of women living with Fibroids.”
The organization was founded by Sateria Venable, who was diagnosed with fibroids in her 20s and subsequently recommended for a hysterectomy. She wanted to preserve her fertility, so she continued 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 > learn more
CARE ABOUT FIBROIDS
CARE About Fibroids is a Washington, DC-based nonprofit working 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.