Made of muscular uterine tissue, uterine fibroids can form within or outside the uterus. They can be smaller than a pea or larger than a full-term baby. Women can also have one uterine fibroid or multiple fibroids at one time. Every woman’s case is unique.
Kumar has noticed some myths that patients have been told:
- It’s “just” a heavy period, nothing serious.
- Since it runs in the family, there’s nothing you can do about it.
- Doesn’t everyone have period issues like this?
- If I get pregnant, it will get rid of my uterine fibroids.
- Just have a hysterectomy after your kids are born. You’ll be fine.
“While it’s true that uterine fibroids could be hereditary, it’s not true that women have to suffer in silence,” Kumar says. “And a hysterectomy is not the only treatment option.”
“There are other choices, like medication or certain procedures,” Kumar says. “You don’t have to endure this until after your kids are born.”
Uterine fibroids can be a major health issue. Kumar says her period has lasted up to 19 days. She drinks 2 gallons of water every day, a habit that started as a way to keep her blood pressure up.
Anemia is a constant concern for Kumar, due to her heavy menstrual bleeding. Heavy periods lead to a greater loss of red blood cells, which deliver oxygen throughout the body. Without enough oxygen, the body suffers, leading to the potential for issues such as weakness, fatigue, dizziness, rapid heartbeat, irritability and headaches.
Sateria Venable, founder of The Fibroid Foundation, a nationwide advocacy group for uterine fibroid patients, had such severe problems with fibroid-related anemia that her doctor warned her she could pass out while driving.
“That was an eye-opener for me,” she says. Before treatment, Venable’s hemoglobin fell as low as 5.6 milligrams per deciliter; the normal level is at least 12 mg for women.
Uterine fibroids also can make it tough to live life normally. Kumar has heard shocking stories from patients.
“Many women carry a backpack full of super tampons, pads and a change of clothing,” she says. “Many say their bleeding and pain keeps them in bed several days every month or forces them to miss work.”
Kumar is no stranger to challenges like these. She has had to plan around social events like weddings or parties. If she’s traveling during her period, she carriers a backpack of her own full of sanitary supplies and black leggings. “You never know when you’re going to stand up and have a gush of blood,” she says.
Too many women endure these symptoms without seeking help, Kumar says.
“As a society, we need to teach our daughters, friends, family about what’s normal and what’s not,” she says. “You’re not supposed to experience heavy periods consistently.”
Kumar says it’s critical for patients to be an advocate for themselves and discuss their symptoms and the impact they have on their lives openly with their doctors without being embarrassed.
“If I were treating women with uterine fibroids, I would want them to be proactive in a conversation,” she says. “I would want them to tell me about the symptoms they’re having, and how fibroids are affecting their lives.”
“Patients should also prepare and bring a list of questions for their doctor to help guide the conversation and make sure their concerns are being addressed,” says Kumar. “It is important that patients have meaningful conversations with their doctor where both sides are engaged, so that when, or if, treatment is considered, everyone feels confident in the treatment approach.”
She adds that there is reason for hope. Researchers are looking at many potential mechanisms that may lead to uterine fibroids. Kumar says hormonal therapy has helped with her symptoms, but new treatment options are also being developed and made available.