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.
- ❖Symptoms like heavy bleeding, pelvic pain, and anemia are often dismissed as 'normal periods,' leading to delayed diagnosis.
- ❖The Stephanie Tubs Jones Uterine Fibroid Research and Education Act aims to secure $30 million annually for NIH research and CDC education.
- ❖Patient advocacy, like The White Dress Project, plays a crucial role in raising awareness and supporting women.
- ❖Fibroids can significantly impact sexual health, causing pain during intercourse due to size or location.
- ❖Expert surgeons can remove numerous and large fibroids while preserving the uterus, challenging the notion that hysterectomy is the only option.
- ❖Misogynistic reimbursement rates for women's surgeries disincentivize complex, time-consuming fibroid removal procedures.
- ❖A thorough medical workup for fibroid-related symptoms should involve detailed conversations, not just quick assumptions.
- ❖The 'White Dress Project' uses white clothing as a symbol of hope and solidarity for women who previously feared wearing it due to unpredictable bleeding.
Insights
1Legislative Action to Address Fibroid Epidemic
Congresswoman Yvette Clarke championed the Stephanie Tubs Jones Uterine Fibroid Research and Education Act, alongside other legislation, to authorize significant NIH funding for research and expand CDC education. This initiative seeks to combat the historical lack of research and insight into fibroids, particularly given their epidemic status and disproportionate impact on Black women.
The legislation commits $30 million annually from fiscal year 2024 through 2028 to this mission, aiming to raise awareness and ensure faithful execution of the law.
2Delayed Diagnosis and Medical Dismissal in Fibroid Patients
Tena Grey Balborn's personal experience illustrates a common issue where women's severe fibroid symptoms, such as heavy bleeding and anemia requiring transfusions, are dismissed by medical professionals for years. She was told her symptoms were 'normal' for becoming a woman, leading to a decade-long delay in diagnosis despite significant health impacts.
Tena was diagnosed with fibroids at 25 or 26, after experiencing severe symptoms since her early teens and receiving a blood transfusion for anemia without an initial deep dive into the cause. She noted doctors often tell women, 'Let's just watch and wait and see' or attribute symptoms to other factors, leading to dismissal.
3Fibroids and Sexual Health Impact
Dr. Pierre Johnson explains that fibroids can significantly affect a woman's sex life due to their size and location. Large fibroids can press on organs, and those protruding into the vagina can cause pain during intercourse (dyspareunia). However, he cautions that pain during sex is not always fibroid-related and requires a thorough diagnostic workup.
Fibroids sitting lower on the uterus or protruding into the vagina can be very painful. Large fibroids pushing on other organs can also cause pain during intercourse. Dr. Johnson emphasizes that a thorough exam is needed to differentiate fibroid-related pain from other causes like vaginismus or lichen sclerosis.
4Uterus Preservation and Advanced Fibroid Surgery
Dr. Pierre Johnson asserts that no fibroid is too big to manage, and every woman should have the option to preserve her uterus for pregnancy if desired. He challenges the common practice of vertical incisions for benign gynecological conditions, stating they are unnecessary even for large or numerous fibroids.
Dr. Johnson has never turned down a fibroid case and has removed up to 304 fibroids in one surgery. He argues that if a 10-13 pound baby can come out of a preserved uterus, a fibroid of similar size should also allow for uterus preservation. He states there is 'never a need for a vertical incision in benign gynecology' and that procedures should be done through a horizontal incision low in the pelvis.
5Defining Advanced Fibroid Disease and Surgical Intervention
Dr. Johnson categorizes 'advanced fibroid disease' as when a woman's dominant fibroid is 10 cm or greater, or the combination of fibroids extends the uterus to the belly button and beyond. For these cases, surgical intervention is typically inevitable, but the method depends on the patient's goals.
He defines advanced fibroid disease as a dominant fibroid of at least 10 cm or greater, or a uterus enlarged to the belly button or beyond. For such cases, surgical intervention is 'inevitable,' but the approach is tailored to goals like pregnancy versus symptom relief.
Bottom Line
The 'misogynistic' reimbursement rates for women's surgeries disincentivize complex, uterus-preserving fibroid removal procedures.
This financial structure means doctors lack incentive to perform time-consuming myomectomies, pushing them towards quicker, more profitable procedures like hysterectomies, even when not medically necessary or desired by the patient. This directly impacts women's reproductive choices and health outcomes.
Advocacy efforts should target policy changes in medical reimbursement to adequately compensate for complex women's health procedures, aligning financial incentives with patient-centered care and uterus preservation.
The political climate and specific administrations can significantly hinder the allocation and utilization of congressionally appropriated funds for women's health research and education.
Even when legislation secures funding, executive branch actions or priorities can impede its intended use, creating a bottleneck for critical research and public awareness campaigns. This means legislative wins are not always immediate practical wins.
Advocacy groups must maintain vigilance beyond legislative passage, monitoring the execution of funding and holding administrations accountable for deploying resources as intended for public health initiatives, especially for underserved conditions like fibroids.
Discussions around fertility and fibroids often overlook the crucial factor of egg quality, focusing primarily on uterine health.
Patients seeking pregnancy after fibroid removal may have unrealistic expectations if egg quality is not assessed and addressed. A 'cleared uterus' does not guarantee conception if egg viability is compromised, leading to further disappointment and delayed appropriate fertility treatments.
Healthcare providers should integrate comprehensive fertility assessments, including ovarian reserve testing, early in the treatment planning for women with fibroids who desire pregnancy, ensuring a holistic and realistic approach to reproductive goals.
Key Concepts
Second Opinion Principle
When facing significant, personal, or overwhelming health questions, especially after initial dismissal or unsatisfactory answers, actively seek additional medical perspectives to gain clarity and ensure comprehensive care. This model emphasizes patient empowerment and critical evaluation of medical advice.
Patient Advocacy as a 'Dating' Process
Finding a healthcare provider who is aligned with your health goals and actively listens to your concerns is akin to finding a compatible partner. If a doctor does not meet your needs or validate your experiences, it is acceptable and necessary to seek another provider who is a better 'fit' for your care.
Lessons
- Track your symptoms rigorously, noting frequency, severity, and impact on daily life, to provide concrete evidence to your doctor.
- If experiencing heavy periods, pelvic pain, or unexplained fatigue, ask your doctor specifically for an ultrasound to screen for fibroids.
- Seek a second opinion if your symptoms are dismissed, if you are told severe pain is 'normal,' or if hysterectomy is presented as the only option without discussing alternatives.
- Become an active advocate for your own health by researching options, asking pointed questions, and finding a healthcare provider who aligns with your treatment goals.
- Engage with advocacy organizations like The White Dress Project to connect with a supportive community and learn how to effectively lobby for legislative change and increased awareness.
Empowered Patient Advocacy for Uterine Fibroids
**Recognize and Document Symptoms:** Do not normalize severe period pain, heavy bleeding, or chronic fatigue. Keep a detailed log of your symptoms, including their intensity, duration, and how they interfere with your daily life.
**Demand a Thorough Workup:** If you suspect fibroids, specifically request an ultrasound. If initial medical advice feels dismissive or incomplete, do not hesitate to seek a 'second opinion' from another gynecologist or specialist.
**Communicate Your Goals Clearly:** Discuss your reproductive goals (e.g., desire for future pregnancy) and symptom relief priorities with your doctor. Ensure your chosen treatment plan aligns with these personal objectives.
**Explore All Treatment Options:** Understand that hysterectomy is not the only solution. Ask about medications, minimally invasive procedures, and uterus-preserving surgeries like myomectomy. Inquire about the doctor's experience with complex fibroid cases.
**Engage in Community and Advocacy:** Connect with patient advocacy groups like The White Dress Project for support, shared experiences, and resources. Participate in efforts to raise awareness and lobby for increased research funding and education.
Notable Moments
Tena Grey Balborn's emotional recounting of her 10-year battle with fibroids, including 27 fibroids removed in her first surgery and 8 blood transfusions, culminating in a miracle pregnancy after years of infertility.
This personal narrative powerfully illustrates the severe physical and emotional toll of fibroids, the impact of medical dismissal, and the profound hope and gratitude that can come from persistent advocacy and effective treatment.
The explanation of The White Dress Project's symbolism, where women wear white as a symbol of hope and freedom, overcoming the fear of unpredictable bleeding.
This highlights a unique and impactful approach to patient advocacy, transforming a source of shame and anxiety (wearing white with heavy bleeding) into a powerful symbol of solidarity, empowerment, and collective hope for a cure.
Dr. Pierre Johnson's assertion that 'no fibroid is too big to manage' and that vertical incisions are never needed for benign gynecology, even for cases with hundreds of fibroids.
This challenges conventional surgical practices and offers hope to women with complex fibroid cases that uterus preservation is possible without extensive, cosmetically impactful scarring, provided they find a skilled and committed surgeon.
Quotes
"This is just the floor for what we know needs to be done in terms of research, what we know needs to be done in terms of education, which is another challenge with this administration."
"We often say in our community at the White Dress Project that, you know, 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."
"You know, it's one of those things. It's an honor and a privilege to be able to be a parent... I didn't know that love until my baby girls."
"When I look at him, I see literally see hope. I literally see faith. I literally see gratitude."
"No fibroid is too big to manage and that every woman should have the option to preserve her uterus."
"There's never a need for a vertical incision in benign gynecology. I don't care how big the fibroid is. I don't care how much adhesions or scar tissue or whatever you never need to cut someone vertically up their belly for benign gynecology."
Q&A
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