Fibroids Explained. Up to 50% of Women Suffer In Silence. Black Women at Highest Risk.#SecondOpinion
Quick Read
Summary
Takeaways
- ❖Uterine fibroids are non-cancerous growths affecting 20-50% of reproductive-aged women, with Black women at highest risk.
- ❖The Stephanie Tubbs Jones Uterine Fibroid Research and Education Act seeks $30 million annually for research and education.
- ❖Many women suffer in silence for years, often dismissed by healthcare providers who normalize severe symptoms like heavy bleeding and pain.
- ❖Patient advocate Tena Grey Balborn experienced 10 years of infertility and multiple surgeries, including the removal of 27 fibroids, underscoring the severity and delayed diagnosis.
- ❖Dr. Pierre Johnson, the 'fibroid slayer,' asserts that no fibroid is too big to manage and advocates for uterus-preserving surgeries with horizontal incisions.
- ❖Painful intercourse or abnormal bleeding may not always be directly caused by fibroids; thorough diagnosis is essential.
- ❖Women are encouraged to track symptoms, ask for ultrasounds, and seek second opinions to ensure proper care.
Insights
1Legislative Action Addresses Fibroid Epidemic and Disparities
Congresswoman Yvette Clark championed a comprehensive legislative package, including the Stephanie Tubbs Jones Uterine Fibroid Research and Education Act. This act aims to authorize $30 million annually from fiscal year 2024 through 2028 for NIH research and CDC education on uterine fibroids, specifically acknowledging the disproportionate suffering of Black women. The legislation also includes the Uterine Fibroid Intervention and Gynecological Health Treatment Act and the Uterine Cancer Study Act, all part of a broader effort to improve women's uterine health.
Congresswoman Evette Clark of New York...has championed the Stephanie Tubs Jones Uter Fibroid Research and Education Act, which seeks to authorize significant NIH funding for research and expand CDC education...There's a commitment to $30 million a year for fiscal year from fiscal year 2024 through 2028 that is dedicated to this very mission.
2Medical Dismissal Leads to Delayed Diagnosis and Severe Health Consequences
Tena Grey Balborn's personal story illustrates how medical dismissal can delay fibroid diagnosis for years. Despite experiencing heavy bleeding, bloating, and pain since her early teens, and requiring a blood transfusion for severe anemia in college, her symptoms were initially normalized or misdiagnosed. It took over a decade for her to receive a fibroid diagnosis, highlighting a common experience for many women, particularly Black women, who are told their severe symptoms are 'normal' menstrual issues.
My experience with fibroids started very, very early...I was really just thinking all along that you know this was normal...I went to the doctor, extremely anemic, had to get my first blood transfusion...It wasn't until much later, I think I was about 25 or 26 that I went for my um yearly annual exam and someone said to me, 'Hey, has anyone told you you have fibroids?'
3Fibroids Significantly Impact Fertility and Require Multiple Interventions
Tena Grey Balborn endured 10 years of infertility directly impacted by fibroids. She underwent three myomectomies (surgical removal of fibroids), with 27 fibroids removed in her first surgery and 13 in her second, five years later. Additionally, she had multiple hysteroscopies to clear her uterus of polyps and scar tissue. Her uterus had even latched onto her bladder, complicating later surgeries. Despite these challenges, she successfully carried a pregnancy to term after IVF, emphasizing the profound physical and emotional toll fibroids can take on reproductive goals.
I've had um a myomectomy twice...my very first surgery um I had 27 fibroids removed...I had to have a second myomectomy 5 years later...I believe that was about 13 fibroids...I had a miscarriage in October of 2022...I um found out that I was um pregnant...I now have my 11-month-old.
4Fibroids Can Cause Painful Intercourse, But Not Always the Sole Cause
OBGYN Dr. Pierre Johnson explains that fibroids can cause painful intercourse (dyspareunia) due to their size and location, particularly if they push on other organs or protrude into the vagina. However, he stresses the importance of a thorough workup, as other conditions like vaginismus or lichen sclerosis can also cause pain during sex and may not be related to fibroids. Doctors must engage in detailed conversations with patients to understand the specific nature and history of the pain.
If you have fibroids that you know are sitting lower on the uterus or protruding um causing an impact into the vagina um they can be you know very painful...You can have pain with intercourse and you can have fibroids and they not be related...you have vaginismas, you have um you know lychen sclerosis, you have so many different things that can cause pain with intercourse uh that really have nothing to do with fibroids.
5Uterus Preservation is Possible for Even 'Advanced' Fibroid Disease
Dr. Pierre Johnson asserts that 'no fibroid is too big to manage' and that every woman should have the option to preserve her uterus. He defines 'advanced fibroid disease' as a dominant fibroid 10 cm or greater, or a uterus enlarged to the belly button or beyond. He argues that if a uterus can deliver an 11-pound baby and be preserved, it can also be preserved after removing large fibroids. He also states there is never a need for a vertical incision in benign gynecology, regardless of fibroid size or number, advocating for horizontal incisions to preserve cosmetic integrity.
I say f there is no fibroid that's too big to um to manage. And if a woman so desires to, you know, preserve her uterus for pregnancy...she should be able to do so...there's never a need for a vertical incision in benign gynecology. I don't care how big the fibroid is.
Key Concepts
The Patient as Advocate
This model emphasizes the critical role of patients in actively seeking information, questioning diagnoses, demanding thorough workups, and pursuing second opinions when their symptoms are dismissed or inadequately addressed. It highlights that medical expertise alone is insufficient without patient self-advocacy, especially for conditions like fibroids where systemic biases can lead to delayed or inappropriate care.
The Second Opinion Imperative
This model posits that for complex, personal, or overwhelming health issues, a single medical opinion is often insufficient. It encourages patients to seek multiple perspectives, particularly when initial diagnoses are vague, dismissive, or lead to drastic interventions without exploring all options. This approach helps ensure comprehensive understanding, validates patient experiences, and can lead to more tailored and effective treatment plans.
Lessons
- Track your menstrual symptoms (heavy bleeding, pain, bloating, fatigue) to identify patterns and provide concrete data to your healthcare provider.
- If experiencing severe or persistent symptoms, specifically ask your doctor for an ultrasound to screen for fibroids, rather than accepting a 'normal period' explanation.
- Seek a second opinion if your symptoms are dismissed, if you are pressured into a hysterectomy without discussing alternatives, or if your doctor doesn't thoroughly investigate your concerns.
- Educate yourself on fibroid treatment options, including medications, minimally invasive procedures, and fertility-preserving surgeries like myomectomy, to make informed decisions about your care.
- Engage with advocacy groups like The White Dress Project to learn how to effectively advocate for yourself in medical settings and with policymakers, and to find community support.
Patient Advocacy for Fibroid Care
**Document Your Symptoms:** Keep a detailed log of your menstrual cycle, including duration, flow (e.g., changing pads hourly), pain levels, associated symptoms (bloating, fatigue, pain during sex), and how they impact your daily life. This provides objective data for your doctor.
**Prepare for Appointments:** Write down all your questions and concerns before your visit. Clearly state your goals (e.g., fertility preservation, symptom relief) and be prepared to articulate how fibroids are affecting your quality of life.
**Demand a Thorough Workup:** If your symptoms are severe, insist on diagnostic imaging like an ultrasound. Do not accept dismissal as 'normal periods.' If fibroids are found, discuss their size, location, and potential impact.
**Explore All Treatment Options:** Be aware that hysterectomy is not the only solution. Ask about medications to reduce bleeding, minimally invasive procedures to shrink fibroids, and uterus-preserving surgeries like myomectomy. Understand the risks and benefits of each option relative to your personal goals.
**Seek a Second Opinion (or Third):** If you feel unheard, rushed, or are only offered limited options, actively seek another medical professional. Look for specialists known for their expertise in fibroid management and uterus preservation, like those who perform complex myomectomies or are known as 'fibroid slayers.'
Notable Moments
Tena Grey Balborn recounting her 10-year journey of misdiagnosis, severe anemia requiring blood transfusions, and multiple surgeries for fibroids, culminating in a miracle pregnancy after IVF.
This personal narrative powerfully illustrates the profound physical, emotional, and reproductive toll of fibroids, the pervasive issue of medical dismissal, and the resilience required for patient advocacy.
Dr. Pierre Johnson, 'the fibroid slayer,' explaining his philosophy that no fibroid is too big to manage and advocating for uterus preservation and horizontal incisions even in complex cases.
This challenges conventional medical practices that often lead to hysterectomies or more invasive surgeries, offering hope and alternative perspectives for women seeking to preserve their uterus and cosmetic integrity.
Quotes
"There's a commitment to $30 million a year for fiscal year from fiscal year 2024 through 2028 that is dedicated to this very mission."
"We often say in our community at the White Dress Project that, you know, uh finding a good doctor and getting a doctor who is aligned with your mission is just like dating, right? If we are not on the same page, if we don't want the same things, if we don't want the same outcomes, then maybe we're not a right fit."
"I've had 27 fibroids removed which was um so impactful and it started this whole journey to advocacy and really understanding what was happening in my body."
"No, it's not. It should not hurt. It should not be a painful process."
"If you have a 10, 11, 12, 13 pound fibroid, why can't you preserve the uterus the exact same way? Um, it's it's it's the same thing."
"Just because you take fibroids out does not mean that your bleeding is going to automatically get better."
"Fibroids are common, but suffering through them is not something you have to accept. Your body isn't being dramatic. It's actually just communicating."
Q&A
Recent Questions
Related Episodes
Fibroids Explained. Up to 50% of Women Suffer In Silence. Black Women at Highest Risk.#SecondOpinion
"This episode exposes the silent epidemic of uterine fibroids, particularly among Black women, highlighting the critical need for increased research, education, and patient advocacy against medical dismissal."
The Most Important Conversation You’ll Ever Hear About Women’s Health | Dr. Rachel Rubin
"Dr. Rachel Rubin, a leading urologist and sexual health expert, exposes decades of medical neglect and misinformation in women's health, revealing how simple, affordable hormone therapies and anatomical understanding can prevent common, debilitating issues like UTIs, pain, and low libido across all ages."
Difficult People. Stress Headaches. Dementia Care. What’s Taking a Toll #SecondOpinion
"This episode explores how difficult relationships accelerate aging, the physical toll of stress leading to chronic headaches, and the critical aspects of understanding and caring for loved ones with dementia and Alzheimer's."
Deadly MRI Accident. Inmate Awarded $307M. Iran War Powers. Black Women's Work Value #TheBreakdown
"This episode unpacks systemic injustices from fatal MRI accidents and prison medical neglect to economic disparities for Black women, while also spotlighting community-driven solutions and the high stakes of political engagement."