"My doctors dismissed it as oh maybe you just have overactive ovaries, which at the time didn't make a lot of sense to me. And he just said let’s just wait and see. And to this day those words echo in mind because what were we waiting to see,” said Teneele Bruce, the Director of Patient Education for the White Dress Project.
"Let's just wait and see,” words Bruce can't shake. She's part of the 70 percent of women that will develop Uterine Fibroids in their lifetime.
"My fibroids grew to the size of a 6 to 9 month pregnant belly. That's what I was working with."
Fibroids are tumors that grow in the wall of the uterus. Though they are almost always non-cancerous, they can be incredibly painful causing heavy menstrual bleeding, anemia, increased urinary frequency and fertility issues.
"Black women are unfortunately disproportionately affected by Uterine Fibroids. That 70 percent gets bumped up to 80 to 90 percent of black woman being affected by uterine fibroids by the age of 50."
Bruce found strength through the White Dress Project.
" I didn't feel like I was operating in a silo anymore. My gosh, we’re hearing things like you have all changed my life or I needed a second opinion. This organization has given me the language and the tools to approach doctors with the questions that I have,” said Bruce.
She was encouraged by woman who faced similar struggles including the founder Tanika Gray Valbrun.
“I was in extreme pain and what was happening is that the fibroids were breaking apart and passing through my birth canal. I was having contractions of pain. It was such a weird position to be in, because I was having contractions but not pregnant,” said Valbrun.
Valbrun was misdiagnosed. She had surgery to remove tissue from her uterus which then led to multiple blood transfusions.
"The pain was unbearable. And I think it was the mental anguish was another part of it."
Years later she was told she had fibroids, a familiar diagnosis because her mom also had the condition.
"The doctor told me, if they aren't bothering you. Don't bother them. If I look back at my journey and think about what I could have done differently, I would have done something earlier,” said Valbrun.
It wasn't until after she got married and started planning for a family, when she discovered there was a much bigger problem.
"We went to a doctor and he said to me, my uterus was so compromised that I should just save my money and get a surrogate. I had an open myomectomy which is really similar to a c-section. So a hip to hip cut, they took out the fibroids that way, just like you would take out a baby,” said Valbrun.
They removed 27 fibroids. The recovery was gruesome, but it also gave birth to the White Dress Project.
"I got into my closet and looked around and realized I didn't have any white clothing. You always want to be in black because your periods and the way your flow can be so unpredictable so you don't want to chance an accident, you don't want to chance an embarrassment,” said Valbrun.
For the past decade, the non-profit has pushed for research, funding and legislation. The organization is holding their annual empowerment experience in D.C. featuring workshops, panels with doctors and more. Click here for more information.
"With the prevalence I couldn't understand why we weren't doing more. I want to do something for people like me,” said Valbrun.