Stephanie Odili knew something was wrong when her stomach ballooned to three times its usual size.
“It was like I was four months pregnant,” the 23-year-old told CNN.
She had also been experiencing heavy menstrual bleeding for years, with her periods sometimes lasting for up to 10 days.
“I was wearing double pads and changing almost by the hour,” Odili said.
Stephanie Odili was diagnosed with fibroids in 2019.
The writer, from Nigeria, would also become doubled over with sharp pains in her stomach.
“I didn’t know what was going on so I started taking painkillers for the pain and birth control to stop the bleeding.”
It was on one of her many visits to the doctor that a scan revealed the swelling and her other symptoms was caused by fibroids.
Uterine fibroids or fibroids are non-cancerous growths that develop in or around the uterus.
The growths are made of fibrous and muscle tissue and have different effects on women. Some of the symptoms include frequent urination, heavy and painful periods, stomach ache and pain during sex.
Although any woman of reproductive age can develop fibroids, Black and African women are more likely to have fibroids than any race group, according to doctors.
A report by the National Center for Biotechnology Information found that Black women are three times more likely to develop fibroids than white women, and are less likely to have small-sized fibroids compared to their counterparts.
In 2014, Tanika Gray Valbrun, a US-based Jamaican reporter wrote legislation in the state of Georgia to get the month of July declared as Fibroid Awareness Month in the US.
Valbrun told CNN that when she was 15 years old, she began experiencing painful and heavy menstrual periods.
“Eventually, I got diagnosed with fibroids in 2001, I was 23,” she said
Now 42, she said the fight for an awareness month was to show the world that fibroids are just as important as other medical conditions.
Too many Black and African women suffer in silence with their symptoms, she says, making it difficult to share knowledge about its effects.
Valbrun added that despite the large numbers of women who have to deal with excruciating pain and other debilitating symptoms, fibroids are not listed on the website of top health organizations like the World Health Organization (WHO).
The WHO has listed and done extensive research on other health topics and conditions affecting women such as female genital mutilation, cancer, and infertility.
“I just don’t understand it, like, if so many Black women have fibroids, why aren’t more people talking about it? Why aren’t there so many walks and campaigns like there are for other medical conditions?” she said.
CNN contacted the WHO for comment but did not immediately receive a response ahead of publication.
Dr. Ugochukwu Ekwunife, a consultant obstetrician and gynecologist at Lagoon Hospital in Lagos, Nigeria, says the exact cause of fibroids is unknown, but they have been linked to the hormone estrogen.
Estrogen is the female reproductive hormone produced by the ovaries, it is responsible for the development of the female reproductive system, he said.
“Fibroids are common with women within the reproductive age group, that’s age 16 to 50. Women within this age group have their estrogen levels at the highest making them more likely to get fibroids,” Dr. Ekwunife told CNN.
Audrey Mutare says she has been battling pain with fibroids since her early teens.
“I had all the symptoms growing up, heavy bleeding, and excruciating pain. With every cycle, I got really sick. But I never imagined fibroids, I just thought it was normal for African women to go through period pain,” she explained.
Fibroids can also cause complications with pregnancy and childbirth as ones located in the inner lining of the womb can distort the growth of babies, according to Dr. Ekwunife.
Mutare had a miscarriage in 2014.
“I went to a gynecologist and he said to me ‘you are nine weeks pregnant but you have these gigantic fibroids.’
Audrey Mutare eventually had her baby Zoey after several miscarriages following her fibroid diagnosis.
“I was so petrified because I didn’t know what that meant for my pregnancy,” Mutare told CNN.
A week after the doctor’s visit, the 33-year-old Zimbabwean lost her pregnancy.
In 2015, Mutare had another miscarriage, forcing her to consider a fibroid embolization, a noninvasive procedure used to shrink fibroid tumors. “I had really high hopes but when I lost yet another baby, I knew I had to do the embolization. For someone who loves the idea of family, I was so scared,” she said.
After the embolization, Mutare found out she was pregnant again and was placed under strict supervision by her gynecologist.
According to her, she was confined to bed for a significant part of her pregnancy as a safety measure to avoid complications, “my baby was born so small, you could tell the fibroids were competing with her for blood supply,” she explained.
Nana Konamah, an entrepreneur and wellness activist from Ghana also suffered a miscarriage after being diagnosed with fibroids. She has been spreading awareness throughout July on the condition.
Through her website and social media pages, she is discussing period stigma, and the need to address heavy and painful menstruation with medical experts and women living with fibroids.
In 2019, Konamah made a documentary about fibroids and its implications with her friend, Jessica Nabongo.
“I had a myomectomy in July 2019. It was a rollercoaster of emotions and I was angry at my body because I felt like it had betrayed me,” Konamah said.
A myomectomy is the surgical removal of fibroids. They can also be removed through a hysterectomy (removal of the womb), Dr. Ekwunife said.
Nana Konamah has started a campaign around period stigma to fight the silence around heavy periods.
“There is a chance of recurrence even when the fibroids are taken out, so some women opt for hysterectomies. Removing the womb eliminates any chance of fibroids considering they grow in or around it,” he explained.
He added that for women who are not interested in surgery, there are medical ways of managing symptoms.
“There are some drugs that can be given to reduce the amount of blood flow during periods. There are certain injections that can shrink the size of the fibroids and painkillers for the pain. All of these methods have their side effects, and have to be communicated with the patient,” he said.
Konamah echoed Valbrun’s sentiments that more research is needed on fibroids, particularly in Africa where women are not likely to speak out.
Valbrun now runs an organization, the White Dress Project, where she gathers support and promotes awareness in the US and South Africa through education and advocacy.
“It’s called the White Dress Project because we use the white as a symbol of hope. When you have fibroids you don’t feel comfortable wearing white because of the heavy bleeding. I wanted to turn that negative to a positive and use it as a symbol of hope,” she said.