I will not accept fibroids as a “woman’s spell”
Tanika Gray Valbrun is the founder of the White Dress Project and a senior content producer at CNN.
I’ve heard stories of women with light periods – you know, the ones where you can play tennis or have brunch, like in a tampon commercial. But since I was 14, my menstrual cycles have been something to survive, not to celebrate. And it took me years to figure out why: just like my mom, I have uterine fibroids.
Symptoms, but no answers
I have always had fairly heavy periods. My mother had uterine fibroids and had lost two pairs of twins to them. I was born between these miscarriages, her miracle child, the only one who survived before she had to undergo a hysterectomy to eliminate the heavy bleeding and pain that came every month. But despite her experience, when my symptoms got worse, we both ignored fibroids as a potential cause.
Before going to college, I decided to get checked out by my doctor and described my symptoms. In addition to the spurting periods, there were large clots. I felt weak quite regularly due to extreme blood loss. Even my mother, who had to some extent normalized her heavy periods, was worried.
My doctor ordered a D&C (dilation and curettage) procedure, normally used to remove fetal material from the uterus, without even an ultrasound. I hesitated – I wasn’t having sex and didn’t know why it would be necessary. However, despite my reservations about this procedure, I accepted it. It didn’t do anything. You can’t just scratch the fibroids.
Surgeries on the way to parenthood
I was finally diagnosed with fibroids in 2007, five years before I got married. My husband and I were so excited to start trying for a baby, so I went to get checked again. This time, they delivered devastating news: 27 uterine fibroids seriously compromised my uterus. They advised me to look for a surrogate mother.
There was something so damning about this statement. In the six months following my marriage, my dreams of being a mother were torn from me by a diagnosis that had already robbed me of my quality of life. I cried for days. Then I decided to get a second opinion.
The next doctor informed me that even though my uterus was compromised, there was still a chance. In 2013, I had my first myomectomy to remove these 27 fibroids. It was performed by cesarean section, with the same recovery time. In 2018, I had to undergo another surgery, this one laparoscopic, to remove new fibroids.
More recently, I had less invasive surgery to shave off a fibroid that had developed. I am still on my way to motherhood and have had two embryo transfer failures. Now, with my uterus as clean as possible, we’ll try again.
Tanika Gris Valbrun
[My mother] taught me to manage like she did. For her, it was part of a woman’s lot, not something to go into.
– Tanika Gris Valbrun
Speak up to find solutions
It’s funny; I thought a lot about what my mother taught me on my journey to motherhood. Although she has struggled with diagnosed fibroids herself, she never suggested that I might be struggling with the same.
Instead, she taught me how to protect myself from the embarrassment of symptoms: how to line up my underwear, how to pack an extra set of clothes, how to lie down on the bed so the flow is less intense. She taught me to manage like she had. For her, it was part of a woman’s lot, not something to go into.
This normalization of pain and suffering as part of the female experience led me to found the White Dress Project. Over the years, I have had to undergo seven blood transfusions to combat the loss of blood. Obviously, I didn’t wear a lot of white clothes.
After my first operation, I started to think about all of the accommodations I subconsciously made to deal with my condition. Avoiding white clothes was just one of them. I couldn’t have a car with cloth seats. I couldn’t leave the house without a change of clothes. I had to get up at meetings because if I got up I might bleed. And through it all, no one in my life has talked about uterine fibroids, even though 80% of black women will have it before the age of 50.
For me, the White Dress Project is not about changing the conversation about uterine fibroids. It’s about having it in the first place. Without frank discussions about a widespread diagnosis, it is impossible to move forward and find a cure or a better treatment.
The White Dress Project started in 2014, after my first operation. One of the first things I did was write a law declaring July Uterine Fibroid Awareness Month. Getting people talking is key. And now, finding funding for further research is the next step. We have found an ally in Rep. Yvette Clarke, who sponsors the Stephanie Tubbs Jones Uterine Fibroid Research and Education Act of 2021. We are now looking for additional sponsors to pass this bill.
Tanika Gris Valbrun
Maybe my trip will save another woman from lying weakly on her bed, wondering why the bleeding is so bad. Once we start sharing, there is power in our collective voice.
– Tanika Gris Valbrun
Looking back, it’s hard not to wonder: was there something I could have done differently? Could I have had the operation earlier? Could I have changed my diet to try and slow the growth of fibroids? I believe everything happens for a reason, however. Maybe my trip will save another woman from lying weakly on her bed, wondering why the bleeding is so bad. Once we start sharing, there is power in our collective voice.