It’s also important to ask for help, Ms. Dixon said.
Start by learning to recognize the signs that your mind, along with your body, has been affected by a fibroid diagnosis. Ask yourself: Have your social activities or preferences changed since your diagnosis? Are you sad or depressed, having trouble concentrating or sleeping, or experiencing crying spells, drastic appetite changes, weight changes or suicidal thoughts?
If so, you may want to consider talking to a mental health professional, Ms. Dixon said.
Getting a therapist changed the life of Tanika Gray Valbrun, a 43-year-old journalist who was diagnosed with fibroids at 25. Counseling helped eliminate the shame she used to feel about her fibroids. She recognized that therapy has a stigma in some parts of the Black community and recalled being discouraged by her Jamaican mother from publicly sharing her experience with fibroids.
“I don’t blame my mother because she’s only teaching me what she was taught,” Ms. Valbrun said. “But at some point we have to change that narrative.”
Having friends, family or romantic partners who understand and validate your physical and psychological pain can help you better manage any strong negative emotions, and help you feel cared for and supported. They can also attend in-person and virtual doctor’s visits with you to take notes and help contextualize the discussion.
“You need that person, so when you walk out the doctor’s office and feel like you’ll never have children, your girlfriend will be like, ‘OK girl, she didn’t say that, but she said we had to do XYZ,’” Ms. Valbrun said.
Dr. Marsh added that it’s important for health care providers to explain all available treatment or preventive care options with patients, which they sometimes don’t do. Ask your provider to walk you through the established treatment guidelines he or she used to develop your treatment plan. It can also be helpful to jot down questions before an appointment, or explore second or third opinions.
Seeking out fibroid patient and physician communities, from organizations and groups like The Fibroid Foundation or The White Dress Project (a nonprofit Ms. Valbrun founded shortly after having her own fibroids surgically removed), can give patients a place to discuss their experiences, connect with caring providers and find events and educational programming.