First diagnosed with uterine fibroids in 2008, filmmaker Erica Taylor had never heard of the health condition. When doctors explained to her that the growths in her uterus were tumors, she panicked. “I heard the word tumor and immediately thought cancer, or at least a very serious illness that could stop me in my tracks,” she says.
Although uterine fibroids are usually noncancerous, the abnormal growths can cause some women to experience a host of unpleasant symptoms, such as heavy or prolonged menstrual bleeding, anemia, painful sex, constipation, frequent urination and swelling of the abdomen.
In March 2014, after enduring a variety of uterine fibroid symptoms, Taylor, then age 35, decided enough was enough. “I had my first abdominal myomectomy,” she says. “Despite being diagnosed years prior, I had no idea that there was a surgery that could successfully and safely remove my fibroids, leaving my uterus intact. I had seen several doctors over the years, and the only option I’d been given was a hysterectomy.”
For Taylor, as well as many other women with uterine fibroids who want a treatment option that won’t compromise their fertility, a myomectomy can be the better choice. However, when she checked online for information about the procedure, she found little to no information available. “I could only rely on what the doctor told me,” she says.
The results of the transvaginal sonogram Taylor’s ob-gyn conducted did nothing to reassure her. “She said that there were so many fibroids that she couldn’t determine the actual number,” Taylor says. “Hearing that information, I was afraid that once she began the procedure, she would be forced to do a hysterectomy.”
A laparotomic myomectomy is one of three types of myomectomies. The other two procedures are called hysteroscopic and laparoscopic myomectomy, respectively.
The procedure requires making an incision about 10 centimeters, or 4 inches, long in the abdomen—preferably at the bikini line—through which the fibroid is removed. This type of myomectomy may involve hospitalization for one to three days and may require six to eight weeks to recover. However, the surgery enables physicians to remove all the fibroids and is generally successful.
During her myomectomy, the doctor removed more than 18 fibroids from her uterus. “She also removed endometiral tissue from both of my ovaries,” Taylor says.
A number of recent studies confirm that there is an association between uterine fibroids and endometriosis, which are the two most common gynecological diseases affecting women’s quality of life and uterine function.
While in recovery at the hospital, Taylor experienced a lot of pain. When she pressed the call button for a nurse, she says no one came. “Apparently, they were so busy in the area that the calls went unanswered for at least 10 minutes or more, so I called several times,” she says. “Groggy, I hadn’t realized that several nurses had come in to administer pain medication back-to-back, possibly giving me an excessive dose of pain medicine. At the same time, I was also hemorrhaging from the procedure.”
When Taylor grew pale and passed out, doctors rushed her to the ICU. “I stayed there for over a week,” she says. “Even after returning home, it took some months before I was back to normal.”
Later, Taylor learned that she had had an allergic reaction to the pain medication she was given.
Many women who opt for a myomectomy report a decrease in uterine fibroid symptoms, such as heavy menstrual bleeding and pelvic pressure. The procedure boasts a low rate of post-surgery problems, but there are risks. Some patients may experience excessive blood loss, scar tissue and complications during childbirth.
For a while, Taylor’s symptoms abated. Then, in January 2017, she discovered that her fibroids had returned.
“I had switched to a vegetarian lifestyle in late 2016. But I returned to eating organic chicken for two months after my internist suggested that I needed to increase my nutrient levels,” she says. “I was unaware that I could have achieved that goal with a plant-based diet and the right supplements.”
During the third month, Taylor began experiencing familiar symptoms, including heavy bleeding and abdominal pain. Her heart sank; her fibroids had returned. “I hadn’t had any symptoms until I began eating meat again, so I immediately went back to a vegetarian diet permanently,” she says. “There was no suggestion from my gynecologist about how to handle my fibroids other than wait and see. I was severely disappointed, especially after all that I had been through a few years prior. I hadn’t had the conversation about fibroids returning after my surgery, but I had heard that they could come back.”
Meanwhile, Taylor and her fiancé at the time moved forward with plans to conceive. “We tried for the next two years—unsuccessfully,” she says.
Then in early March 2019, during an all-day health and wellness retreat where she engaged with friends in intense exercise, Taylor experienced excessive bleeding and increasingly severe abdominal pain.
“By the end of the week, I was in the ER,” Taylor says. “Turns out I was having a miscarriage. I had no idea I was pregnant!”
For Taylor, the news was bittersweet. “I was thankful to learn that I could conceive despite the rare odds that I would,” she says. “Unfortunately, because my fibroids were still present and had multiplied, I was unable to stay pregnant. The fibroids pulled the blood supply from the developing fetus and caused the miscarriage.”
In a film she produced in 2019 called The Invisible Vegan, Taylor shared her fibroid story. “Women began reaching out to me about their own fibroid struggles,” she says. “After developing a dialogue with them, I knew my next project had to focus on this issue that had interrupted my life for so long.”
That summer, Taylor decided to make a documentary about fibroids.
In September 2019, she got another glimpse of motherhood. “We conceived naturally again, but the pregnancy only lasted six weeks,” she says. “According to our fertility doctor, we may have conceived twins based on my HCG hormonal levels. I knew it was time to address my fibroids once again. “
In November, Taylor began recording her fibroid problems using her cell phone. The footage will appear in her documentary Red Alert: The Fight Against Fibroids. Then the following year, in August 2020, Taylor underwent another myomectomy.
“I was still unaware of all the treatments available for women with fibroids,” she says. “But after I found an African-American female ob-gyn who specialized in fibroid removal, hope returned. She suggested I remove this round of fibroids again, this time by undergoing a laparoscopic myomectomy with the surgeon guiding instruments wielded by a robotic arm. This procedure is much less invasive than the abdominal cut. I felt confident that this was the best method for me at the time.”
Two days after Taylor was discharged, she noticed some bruising on the right side of her abdomen. She contacted her doctor, who told her this was normal. “Later that evening, my incision began bleeding,” Taylor says. “By the end of the night, the bleeding got worse, and I began experiencing pain in that area. I returned to the ER and was told that I had developed a hematoma—a buildup of blood in a surgical wound—and a potential infection. I spent the next few days recovering in the hospital.”
In the fall of 2020, as a result of her activism as a filmmaker and fibroid survivor, USA Fibroids Center and its nonprofit organization, The Fibroid Fighters Foundation, named Taylor as their first national brand ambassador.
A national network of fibroid centers, the center specializes in treating fibroids with a noninvasive procedure called uterine fibroid embolization, or UFE. “UFE is a much simpler procedure, and women can still conceive after the procedure,” Taylor says. “It’s more cost effective and shrinks the fibroids in much less time than it takes to recover from a full-on invasive surgery.”
“If I am a candidate for UFE in the future,” she adds, “I will most certainly choose that treatment option should my fibroids return.”
Taylor is dedicated to her work as a health advocate. “I have stood at podiums throughout the country and spoken and engaged in virtual conversations with women who have been diagnosed with fibroids and talked to change makers in the medical industry and physicians,” she says. “I look forward to continuing this work under the Red Alert brand to bring awareness to as many people as possible until we have increased funding for research and education to help fibroid patients.”