“This is about a community of people working together to really advocate for and give voice to all of our experiences. We’re using our stories to create change!” said, Dr. Nyia Noel, OB/GYN, Assistant Professor and Medical Director.
There’s been a lack of investment in women’s health, from research and clinical trials to funding. And the stats are even worse for women of color. So, there are huge knowledge gaps about conditions that disproportionately impact our health, despite how prevalent they are.
But there’s movement. Patients, healthcare practitioners, researchers and legislators are increasingly banding together, to share stories and drive change at the community level.
Women’s Health is Still Under Researched
In most families, Moms are the “Chief Medical Officers.” And in the past 4 years, navigating healthcare, childcare and eldercare, became much more complicated. So, we often abandon our own needs. But according to nonprofit, the White Dress Project, it takes an average of 7 years and multiple doctors, before women receive a diagnosis for conditions like uterine fibroids, endometriosis or PCOS.
And fibroids, although typically benign, quietly wreak havoc on the quality of life for millions who suffer from symptoms. Including severe pain, infertility, fainting spells or horrific monthly cycles.
Learn About Your Risk Factors
Although fibroids are rarely discussed, they’re not fringe. According to the National Institutes of Health (NIH), they impact 20–25% of women in their reproductive years. And by age 50, it jumps to 70% for white women and the percentages are even higher for Black, Asian-Chinese and Latina women. With Black women often experiencing more severe symptoms, earlier in their lives.
Especially if You Have Symptoms That Aren’t Addressed
Dr. Yvonne Gomez-Carrion an OB/GYN, and Fibroid expert, said “A lot of people don’t even know they have fibroids because they don’t have symptoms. But what drives people to their physicians is if they have heavy bleeding, painful bleeding, pain with sex, constipation or urinary incontinence.” Once you’re diagnosed there are many options you can explore with your healthcare provider. But the key is seeking treatment and ongoing support.
It Can Start as Early as the Tween or Teen Years
If you have a daughter, it’s important to note that some girls experience symptoms from their very first periods. Dr. Yvonne Gomez-Carrion, OB/GYN added, “It’s not normal for an 11-year-old to have heavy painful periods that cause her to pass out, miss days from school or fun activities. And it’s not normal for an adult, not be able to work due to severe pain. And it’s not normal for women not to be able to wear white clothing out of fear from extremely heavy periods.”
Some Women Experience Fertility Challenges
Bianca Gause, a self-described, ‘Fibroids Warrior’ from the White Dress Project, had multiple fibroid treatments through her teens and early adulthood. “In 2020, when I was pregnant my doctors said, ‘your baby is fighting against the fibroids.’ And when it was time to deliver, I had to have an emergency C-section. Because a fibroid had grown so large, my son could not exit and his heart flat lined.”
Or Pregnancy Complications
Bianca was fortunate to deliver a healthy son, and two years later, a daughter. But she had a total hysterectomy to address decades of pain and complications. “I’m fortunate to have my life and my kids but it’s still a mind warp that I don’t have my uterus anymore. And I’m so grateful for the White Dress Project community that supported me through the mental health part of it.”
So, if Pregnant, Evaluate Your Delivery Team
If you have fibroids and are pregnant or planning to start a family, ask your medical providers questions. To help determine what’s best for your circumstances. Melissa Nelson, the Chief Nurse Midwife in the Department of Obstetrics, said, “Think about where you’re going to deliver your baby. Especially if you plan to have a vaginal birth. Ask your provider, does your hospital have anesthesia in-house? Versus having it be offsite and possibly 30 minutes away.”
Dr. Lucy Lomas, OB/GYN explained this proximity to specialized medical expertise is one driver of healthcare inequities. Including for maternal health in rural and underserved communities. “In many communities, labor and delivery units just aren’t close enough.” Which becomes problematic in an emergency.
Find The Right Healthcare Providers
Dr. Yvonne Gomez-Carrion, who has been an OB/GYN for 41 years explained, “The problem still is, many of us are not getting diagnosed. Because we’re going to healthcare providers who don’t hear us.” Systemic failures, including racism, are a known factor in uneven healthcare outcomes.
And if you’re not happy with your care, she suggests trying to find another provider. She noted, in addition to the many top healthcare facilities in Boston, there are nonprofits that specialize in patient support. And organizations, like The White Dress Project, Resilient Sisterhood, other national patient sites can guide you to local resources.
And Stay Informed
Dr. Yvonne Gomez-Carrion said, “Back in the early 90s there was a huge uptick in my practice of young women in their late 20s and 30s who were recommended to have hysterectomies. Although I always say, a woman should not be defined by the number of children she has. Or if she has children, a lot of women want to keep their uteruses, because they were born with them. If someone recommends you have a hysterectomy, your first question should be ‘why?’ And the second, ‘what are my other options?’”
Get Aligned With Your Medical Practitioners
Dr. Yvonne Gomez-Carrion added, “If you’re going to a provider for the first time, take a partner. And I don’t mean you have to bring a sexual partner. Just someone with another set of ears, who can take notes. Because I am from Brooklyn and can talk fast, I encourage my patients to record the visit. And if you’re going to a provider who’s intimidated by that, that’s not the right provider. Because our job is to answer your concerns.”
Seek Community for Social and Emotional Support
Tess Carrington, also a self-described “Fibroids Warrior” said her doctor at Boston Medical Center recommended a patient support group after her diagnosis. “There are so many forums and places to have connections and conversations with other people who have fibroids. It’s also important to speak to your family and friends. Especially the people you trust being vulnerable with so, you can be open with about your experiences. Prioritizing that support is also very important to manage the stress.”
And Prioritize Self-Care
Dr. Yvonne Gomez-Carrion explained there are steps within your control. “We know there’s a genetic component and that fibroids are estrogen driven. We also know stress can cause fibroids or once you have them, the growth of fibroids. So, what you can do falls under the umbrella of healthy lifestyles. Are you sleeping your recommended 8 hours a night and is it quality sleep? Are you eating as well as you can? Are you minimizing your alcohol intake and are you exercising? Think about what’s part of your anti-stress and anti-anxiety tool belt.”
And Remember, Women on a Mission Are Unstoppable
Like raising children, and caring for our extended families, improving women’s health outcomes doesn’t happen in isolation. It’s an intentional, motivated village that needs to include policy makers.
And as Massachusetts Senator, Liz Miranda shared to a room full of supporters, and advocates, “Look around! It’s so beautiful when women gather. And for BIPOC women, it’s particularly important to gather in spaces with our partners, allies and people who support us, to talk about the things we’re doing to save ourselves. Because we are not just talking about fibroids here, we are talking about reproductive health.”’
Many thanks to the incredible speakers and experts who shared their wisdom!
Tess Carrington, patient warrior
Dr. Yvonne Gomez-Carrion, MD, FACOG and Assistant Professor
Bianca Gause, White Dress Project Marketing Director and Performer
Dr. Lucy Lomas MD, OB/GYN
Liz Miranda, Massachusetts State Senator
Melissa Nelson, MSN, CNM, WHNP-BC
Dr. Nyia Noel, MD, MPH, FACOG, Assistant Professor, and Medical Director.
And learn more about the incredible organizers of this event, The EmPOWERed Patient Brunch.
Boston Medical Center, The White Dress Project, and the Resilient Sisterhood.
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About the speakers:
About Dr. Yvonne Gomez-Carrion, MD, FACOG
Yvonne Gomez-Carrion is an assistant professor in obstetrics and gynecology at Harvard Medical School and director of Boston’s Beth Israel Deaconess Medical Center’s (BIDMC) Department of Obstetrics and Gynecology Resident Surgical Service. She completed her residency training at New York-Columbia Presbyterian Hospital and joined BIDMC in 1987.
Yvonne is a gynecologic surgeon who performs complex procedures via both open and minimally invasive approaches. She believes in a holistic approach to health care and has devoted her professional life to educating patients about their bodies’ function and resiliency.
Outside of work, she is involved in several community organizations including the Resilient Sisterhood Project, Community Conversations and the Concerned Black Men of Massachusetts. She enjoys spending time with her family and friends and writing poetry.
About Bianca Gause
Bianca Gause is a very busy woman! She is a dedicated mother and wife and also a triple threat performer, having toured the world singing, dancing, and performing songs that she wrote. As the new Marketing Director for The White Dress Project, she advocates for women’s health while drawing from her personal battle with fibroids, which she has faced since age 11. Bianca’s journey has included a myomectomy, an emergency c-section, a UFE, and ultimately a second c-section with a total hysterectomy due to recurrent fibroids causing significant issues. She is proud to be a part of an organization that prioritizes taking women’s pain and not only turning it into power but also using those stories to make the great changes needed, so future generations won’t have those stories to tell.
About Dr. Lucy Lomas, MD
Dr. Lucy Lomas MD is an expert in women?s health and wellness. She is leading a community-owned wellness center located in Roxbury that prioritizes the physical, mental, emotional and spiritual well-being of patients and healthcare workers. Lucy is a board certified OB GYN physician with over 10 years of clinical experience. She serves as the director of community, health and wellness for the New England Medical Association, a network of black physicians.? She graduated from the University of Southern California for Medicine (2009) and Biomedical engineering (2004). Lucy loves creating joyful experiences for her children, family and friends.
About Senator Liz Miranda
Liz Miranda is the State Senator of the 2nd Suffolk. She is a community organizer, former youth worker, and entrepreneur who ran for office in 2018 to center those who have struggled when the government left us out of the conversation. Propelled to act after gun violence took the life of her brother, Representative Miranda has been a tireless fighter for the constituents of the 5th Suffolk, and families across the Commonwealth.
About Melissa Nelson, MSN, CNM, WHNP-BC
Melissa Nelson, MSN, CNM, WHNP-BC is the chief midwife of the Nurse-Midwifery Division in the Department of Obstetrics and Gynecology at Massachusetts General Hospital. She received her BA in Liberal Arts from College of the Holy Cross. She received her Bachelor of Science in nursing and Master of Science in nursing from the University of Pennsylvania School of Nursing where she specialized in midwifery and women’s health. She has experience in teaching residents, midwifery students and medical students. Her clinical interests are adolescent pregnancy, centering pregnancy, maternal healthcare inequities, and healthcare leadership. In 2023, she completed the Duke University School of Medicine Advanced Practice Provider Leadership Institute and is an active member of the American College of Nurse Midwives.
About Dr. Nyia L. Noel, MD, MPH, FACOG
Dr. Nyia L. Noel, MD, MPH, FACOG is a board-certified obstetrician-gynecologist and Director of Minimally Invasive Gynecologic Surgery at Boston Medical Center (BMC). Dr. Noel is also an Assistant Professor of Obstetrics and Gynecology at Boston University Chobanian and Avedisian School of Medicine. Her clinical and research interests include fibroids, endometriosis, disparities in maternal morbidity and mortality and health care access and systems delivery. Dr. Noel also serves as a co-investigator for the All of Us Research Program at BMC/Boston University Medical Center through which she works to increase enrollment of underrepresented groups in research. During Fibroid Awareness Month in July 2021, she founded The Fibroid Center at BMC, which focuses on exceptional care, patient advocacy and research through centering the patient voice.
