You Are Not Alone in Your Uterine Fibroids Journey

Nkem Osian, a member of Resilient Sisterhood Project’s Young Advisory Leadership Council, sat down with RSP for an interview recently about her journey with uterine fibroids. Uterine fibroids are noncancerous tumors that grow on the uterus and can cause prolonged menstrual periods, early labor, and miscarriages. The size of a fibroid varies from a small seed to a grapefruit or larger.

The Road to Diagnosis

Nkem’s uterine fibroids journey began in 2015 when she worked in New York City but lived in New Jersey. That year, she unknowingly experienced symptoms of the disease—pain, heavy menstrual bleeding, and frequent and large blood clots. The bleeding caused the most issues for her as a commuter, leaving her with stained clothes at work and frequent accidents on public transportation. The American College of Obstetricians and Gynecologists recommends girls and women change their pads at least every four to eight hours, depending on their flow. Yet, Nkem recalled changing her pads about every 30 minutes. At the time, she did not think it was a cause for concern because her mother and aunts also dealt with heavy bleeding. The pain she experienced also made it difficult to walk without feeling like she was fighting for breath or on the verge of passing out. Our society normalizes and dismisses menstrual pain, and Nkem ultimately thought her pain was hormonal changes that would pass.

Months passed, but Nkem’s heavy menstrual bleeding continued. One day, she went to church with her sister, who was in town to visit, and had an accident that left her clothes and the church pew soiled. Her sister, a physician, questioned how long this had been happening. After hearing about Nkem’s experience, her sister looked into her eyes and encouraged her to make a doctor’s appointment. Nkem remembers her sister saying, “You look like you have no blood left in your body.”

Her sister’s instincts were correct. Nkem received her blood work results after a doctor’s appointment and was urged to go to an emergency room as soon as possible. Hemoglobin tests are a common part of blood work to measure the amount of hemoglobin in the body’s red blood cells. Hemoglobin is a crucial protein responsible for carrying oxygen and carbon dioxide throughout your blood, and the less hemoglobin you have, the lower your blood volume is. The normal levels for women range between 12.1 to 15.1 grams per deciliter. Nkem’s level was dangerously low at 3 grams per deciliter, with the doctor describing it as “not conducive to life.” She was scared and worried that she was dying. In the emergency room, several tests were performed, including an echocardiogram of Nkem’s heart. In addition to her other symptoms, Nkem had a lingering cough that turned out to be cardiomegaly—an enlarged heart. Because she had so little blood left in her body, the heart worked in overdrive to compensate. That made Nkem more vulnerable to cardiac arrest at any moment, and she underwent a blood transfusion.

With all the tests, Nkem also learned about one large uterine fibroid on her uterus at the time. The doctors in the emergency room attributed all the heavy bleeding to this fibroid. Aside from cardiomegaly, excessive menstrual bleeding caused by uterine fibroids can lead to severe anemia–a condition where the body lacks hemoglobin to transport oxygen properly. Symptoms of anemia include extreme fatigue, weakness, pale skin, shortness of breath, fragile nails, and an irregular heartbeat. According to the National Institute of Environmental Health Sciences, 70 to 80 percent of Black women will develop these noncancerous fibroid tumors by their late 40s. However, like many others, Nkem had no clue what the disease meant for her overall health and wellness. While her mother had uterine fibroids, the two never formally discussed it until Nkem faced this whirlwind of events.

The Road to Treatment

Through her own research, conversations with medical professionals, and discussions with family, Nkem began to find the answers to some of her questions about uterine fibroids—What are they? What are the treatment options? Can women with uterine fibroids have children?

Because Nkem had one fibroid in a benign location, her doctor at the emergency room did not want to perform a myomectomy—an operative procedure that surgically removes fibroids without removing the uterus. The doctor had some reservations about this particular surgery and, instead, prioritized controlling the heavy bleeding to avoid another blood transfusion by placing Nkem on birth control pills. That worked for about a year, and she was switched to Depo-Provera—a birth control shot administered about every three months to help manage conditions related to menstrual cycles, such as uterine fibroids. Depo-Provera can decrease period-related pain and lessen menstrual blood flow. Within that year, Nkem also moved from New Jersey to Maryland and sought a new primary care physician. However, she had difficulties finding one and ultimately experienced belittlement and condescension from her first healthcare provider. She recalled that doctor being the first to tell her she needed a myomectomy. Nkem switched providers months later and then found a doctor who drew diagrams to help Nkem visualize some of the complex medical information and thoroughly explained all treatment options available.

Alongside having a good doctor, Nkem found support and community. She admitted feeling isolated in 2015 after first receiving her diagnosis but found The White Dress Project (TWDP) in her research on uterine fibroids. She remembered being amazed that there was an organization solely dedicated to advocacy, education, and empowerment regarding fibroids, and she attended several events before officially joining TWDP in 2017. Through their work, Nkem started to speak more about her uterine fibroids story and met people who had uterine fibroids, knew someone with the disease, or both. She was stunned by the number of women experiencing their own journeys and realized she was not alone in dealing with fibroids. Nkem also deeply appreciates the support her mother and sister continuously provide her in her search for treatment. Nkem is incredibly thankful for her sister, saying, “My sister has given me a second chance at life.”

To close the conversation, RSP asked Nkem two things: what would you say if you could speak to your younger self about uterine fibroids? Is there anything else you would like to share with us? In answering these questions, she sends a message to the many women dealing with uterine fibroids and those who face other reproductive health challenges. First, Nkem would encourage her past self and others to trust themselves and avoid normalizing pain:

“If you think something is wrong or off, do not second guess yourself because you know your body better than anyone else. You will encounter a healthcare system you cannot fully depend on, so you must depend on yourself. You and your healthcare provider work in partnership. If they are dismissive, condescending, or belittling you, find someone who listens to your concerns and cares for you. Self-advocacy can be exhausting, but necessary because people are dying from neglect.” 

Lastly, she highlighted the importance of sharing your story. Before working with The White Dress Project, Nkem did not publicly speak about her reproductive health because of the culture of silence. She remembered her past self questioning why she had to tell people about what she was going through. As she spoke more, she felt empowered to break the stigma that kept women suffering in silence.

“Sharing our stories has such a positive impact and helps with education, advocacy, and empowerment. There is power in your story; share it in your time. Our stories and experiences matter. We have lived in silence for too long.” 

To learn more about fibroids, please see our Uterine Fibroids page.

RSP’s Community Partners Spotlighting Fibroids

Fibroid Center at Boston Medical Center

The Fibroid Center at Boston Medical Center provides care to patients with uterine fibroids through a multi-disciplinary, patient-centered, and evidence-based approach. As part of its work, the Fibroid Center utilizes the Centering Healthcare model to develop a longitudinal patient education and empowerment group, with topics focusing on fibroid symptoms, treatment options, and patients’ experiences. 

The White Dress Project

The White Dress Project spreads awareness about the widespread occurrence of uterine fibroids by promoting education, fostering research, building a supportive community, and advocating for better health. TWDP’s efforts focus on educating individuals on fibroids and the available treatment options, collaboration on crucial research, and ending the silent suffering associated with fibroids.