When Tanika Gray Valbrun began seeking care for uterine fibroids—benign tumors that grow in and out of the uterus—she had to convince her doctors that she was in pain. “They give you the chart,” she says, adding that patients use it to number their pain. She says her doctors told her, if her pain was truly a 10, she’d be on the ground in a fetal position or unable to walk. “If a patient comes in and they say [their pain] is a 10, it’s a 10,” Gray Valburn says. “And we need to treat it as such.”

The hardships Gray Valburn faced while navigating her fibroid care journey led her to believe that she wasn’t alone. She was right—most people with uteruses, about 70 percent, will get fibroids before they turn 50. And if you’re Black, that number shoots up to 80 percent. Of folks with fibroids, only a little under half will develop symptoms, which can include heavy and prolonged bleeding, increased pelvic pain and pressure, and an enlarged uterus.

To help others in situations similar to hers, Gray Valbrun founded The White Dress Project, a uterine fibroids advocacy organization that raises awareness and funding for fibroid research. “We’re an organization that is really dedicated to encouraging women to share their individual stories,” says Gray Valbrun. “For so long, we have been taught that—in order to be classy, or in order to be sophisticated, or in order to maintain your credibility—we don’t talk about issues below the belt. But really, we’re doing ourselves a disservice when we don’t talk about what’s happening with our reproductive health.” When you share what you’re going through, Gray Valburn says, it allows for greater understanding from your loved ones, employers, and doctors. But that doesn’t mean it’s always easy to advocate for yourself.

“It can be very challenging for a person in need of reproductive health care to find a clinical situation in which they feel comfortable discussing their experience fully,” says Christin Drake, MD, psychiatrist and clinical assistant professor of psychiatry at NYU Grossman School of Medicine. “There are multiple causes for this including stigma related to sexual health, dismissive attitudes about reproductive needs, and shame that people may be made to feel about their bodies.”

Still, providers must carry most of the weight involved in treating patients. “It is our responsibility as physicians to provide excellent care to all patients, and it ought not be the responsibility of our patients to draw this out of us,” says Dr. Drake, adding that patients need only do their best to report their symptoms and concerns. “Our job is to share what we think is going on medically and to offer a plan to help.” Though you may face ups and downs on the way, you do have some power to help steer your fibroid care journey in the right direction.

Practicing self-advocacy is difficult—but necessary

“When you’re in pain, it’s also hard to advocate for yourself,” Gray Valburn says, but preparation can make it a little easier. If you’re experiencing symptoms, she says it’s helpful to journal about your them “so no one can dispute when you’ve written in your journal five days in a row…” when you bring it to your appointment. She also suggests bringing a loved one who can advocate for you. “I always, when I can, try to bring my husband with me because he’s an attorney. So, being able to throw that card on the table is always helpful,” she says. Though not everyone has the privilege of being married to an attorney, anyone who can vouch for your experience and speak up for you is helpful. It’s useful to have a buddy who can take notes, recall things you might miss, or say ‘she’s canceled dinner plans on me five days in a row because she’s been talking about this pain.'”

If your concerns are being diminished or ignored, Erica Marsh, MD, an OB/GYN, reproductive endocrinologist, and infertility specialist, says to bring your concerns to your health care professional. “What I would encourage first is to have a direct conversation with your provider, which is hard because of the power dynamic and the expertise dynamic,” says Dr. Marsh. Tell your doctor: “I’m really worried about this. It sounds like I have a tumor in my uterus, and I need to understand more. Can you help me? Do you think I need to see a different specialist for these concerns?”

If you have these direct conversations and you’re still feeling like you’re not being taken seriously, then it may be time for a second opinion. “There’s nothing more important in the patient-doctor relationship than trust,” says Dr. Marsh. “You have to trust that your doctor cares about you and has your best interest at heart and is going to do no harm.”

Gray Valbrun says it’s also important to view yourself as the CEO of your body and your health practitioners as your personal board of medical directors. “Just like any other board, you can be dismissed. I can get a second opinion from someone else. I can add people to my medical team,” says Gray Valbrun.

Advocating for yourself can happen on several fronts, and legislation is another place to use your voice. Gray Valbrun recommends reaching out to your Congress member and encouraging them to sign on to the bill H.R.2007, the Stephanie Tubbs Jones Uterine Fibroid Research and Education Act of 2021, which directs the Department of Health and Human Services (HHS) to expand research on and take other actions to address uterine fibroids. With policy in place to dedicate funding toward fibroid research, Dr. Marsh says we’ll move closer to understanding why fibroids happen, how to prevent them, and more innovative ways to treat them.

“As prevalent as these tumors are, it’s incredible how relatively little we know about them,” says Dr. Marsh. “We’re learning more day-by-day about their pathophysiology, meaning, at a cellular and molecular level, how they develop, why they grow. But there are still many unanswered questions remaining.”

Above all, remember that you don’t have to carry this burden alone. “I often see people who attempt to manage medical issues in private,” says Dr. Drake. “Certainly, the details of our health are a private matter, but it can be immensely helpful to share in broad strokes with loved ones that you are experiencing a health challenge.”

And if you have people in your life that you trust with the specifics, be as open as you’d like. “Not just, ‘Hey…I can’t go to the party tonight,’ or, ‘I don’t want to go to brunch because I’m not feeling well,'” says Gray Valbrun, “but someone that you can talk to and say, ‘I’m on my 18th a day of bleeding. I feel fatigued. I feel like I don’t want to talk to anyone. I feel like I’m the only one going through this.'” Sharing your experience allows the people who care about you to provide the support you need. No one can help if they don’t know what’s wrong. “We end up suffering in silence,” says Gray Valburn, and that can impact our relationships and our emotional well-being.

Though getting comprehensive fibroid care can be overwhelmingly taxing, Dr. Marsh says to stay committed to fighting for the medical and emotional support you deserve. “You matter, and you’re worth it. And your health is worth it,” says Dr. Marsh. “It’s important that you feel reassured and comfortable that you’re getting the care that you need.”

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