Monday, July 8, 2024

SURVIVOR STORES: "Silenced No More: The Endometriosis Warrior's Battlecry"

 Written by: Ciji Castro

For three decades, I have battled the silent monster within-- endometriosis. It started at the young age of nine when my first period marked the onset of a tumultuous relationship with my own body. What followed was a labyrinth of surgeries, treatments, and trial drugs, each peeling away parts of me, leaving behind battle scars that narrate a tale of resilience and fortitude.

pre-op photo taken right before last major
excision surgery and total hysterectomy
Endometriosis has spared no organ within me; it afflicted not only my uterus, ovaries, and fallopian tubes but also my appendix, bladder, ureters, colon, rectum, and cervix, potentially encroaching on my lungs. Despite the excruciating agony that became my constant companion, I was met with dismissive remarks, such as overreacting, having a low pain tolerance, being a hypochondriac, or worse, my test results being "normal," and there was nothing "wrong" with me.

Little did they know that beneath my happy, outgoing persona lay a warrior battling stage four endometriosis, armed with a pain threshold that masked the torment within. Post-surgery, I would wake up in recovery, walk to the bathroom on my own, and recover with nothing more than ibuprofen.

Amidst the labyrinth of myths and misconceptions, I was fed lies disguised as hope-- a promise that pregnancy could cure my Endo, that a hysterectomy would be the end of my Endo, and that menopause would usher in an era of long-awaited respite. Yet, each falsehood only fueled my determination to shatter the silence surrounding this nonsensical, mysterious disease.

To those facing their own battle with endometriosis, I urge you to fight fiercely and advocate for yourself. Your voice matters, your pain is real, and your journey is valid. Don't let dismissive attitudes or misconceptions deter you from seeking help and support. Educate yourself, speak up, and don't be afraid to contradict medical professionals who do not specialize in endometriosis or even mention that they "just looked it up"... because, yes, that happens. Never hesitate to demand the care and understanding you deserve, stay resilient, stay determined, and stand in your power. You are not alone in this fight.

As an ambassador for the Endometriosis Foundation of America, my mission transcends mere advocacy; it embodies a fervent dedication to enlighten the masses. I strive to empower today's youth with knowledge, equipping them to navigate a medical landscape where endometriosis languishes in obscurity. I engage in conversations with families, encouraging them to talk to their children about Endo with sensitivity and candor, all while nurturing a culture of understanding and empathy. Together, I hope to break the silence surrounding endometriosis and pave the way for a future where women's health is taken seriously. We are warriors, and our voices can spark change: change in funding for research, change in more medical professionals taking an interest in endometriosis, and change in the care we, as patients, receive.

Until then, I stand resolute, a beacon of strength for those who walk the same arduous path, a voice that reverberates through the silence, echoing the unwavering resolve of a warrior undaunted by the shadows of the pain and uncertainty in my journey with Endo.



CIJI CASTRO
Domestic Gourmet, Content Creator, Restaurant Guide, Activist
Ciji Castro, also known as Domestic Gourmet, is the CEO and Executive Chef behind a line of organic Spanish cooking staples. As a mom of three girls, she is passionate about teaching them about endometriosis. Ciji is an ambassador for the Endometriosis Foundation of America and lends her voice to the character of Maya's mom in the animated show featured on the ENPOWR Project. Look out for her upcoming products, achiote oil and spices, launching later this summer. Combining her culinary expertise with advocacy work, Ciji is making a difference in both the food industry and in raising awareness about women's health issues.


e consult your healthcare professional about potential interactions or other possible complications before using any product.


THE 2024 ENDOMETRIOSIS RESOURCE GUIDE
 (download now)
Dr. Roberta Kline, women's health and genomics specialist presents this supplemental workbook from her presentation at the 15th Annual Endometriosis Foundation Patient Conference in NYC. "To address endometriosis more effectively, we first need to understand what causes it. And it turns out it's not so simple. Endometriosis is a complex disease, which means that there is no single cause and no single answer. What's exciting is that genetic expression research is providing many clues, opening up new opportunities for better diagnostics, earlier detection, and more effective treatments because they're addressing the root causes. While you can’t change your genes, you CAN influence how they get expressed and thus affect your health. In this Endometriosis Resource Guide, you’ll learn simple strategies to optimize your body’s own biology. It’s a powerful tool to help you regain some control back from a disease that all too often feels like it’s controlling you".





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Under a joint report with the Women's Diagnostic Network and HealthTech Reporter, our editors met with Ms. MJ Smith, a clinical ambassador from Screen Point Medical (breast imaging AI) at the 2023 NYC Roentgen Society conference. At the height of the medical conference, we found MJ to be a uniquely profound and engaging speaker about women's health topics.  Exploring a private connection opened us into a collaborative and educational journey befitting our UNDERDIAGNOSED WOMEN series where MJ is truly a life-long supporter of diagnostic care, innovation and non-invasive options.

Endometriosis (sometimes called "endo" for short) is a common health problem in women that is reported to affect more than 11% of American women between 15 and 44. It gets its name from the word endometrium, the tissue that normally lines the uterus or womb. When this tissue is found in locations outside of the uterus, it is called endometriosis. Most often this involves the nearby organs and tissues – ovaries, fallopian tubes, outer surface of the uterus, bladder, bowel and rectum. It can also be found in other locations including the vagina, cervix, vulva, or even distant tissues such as the lungs, brain, eye, and skin. Just like the lining of the uterus, this tissue responds to cycling hormones to grow. But unlike normal endometrium, it is not limited to the surface and does not shed. Because of this, it builds up and creates inflammation, scarring, and other changes that contribute to the most common symptom: pain. 

While endometriosis is most often diagnosed in women in their 30s and 40s, it likely develops much earlier. Due to the wide range of symptoms that women can experience, and lack of effective and noninvasive diagnostic tools, women often suffer for years or even decades. Currently the only accepted way to diagnosis endometriosis is to directly visualize and biopsy the lesions with surgery. This is limiting for two reasons. First, endometriosis has to be considered as a possible explanation for symptoms that are often seen as “normal” for menstruating women. Second, the risk of not knowing has to outweigh the risk of potential complications of invasive surgery. 



Endometriosis can also make it harder to get pregnant, and it is not uncommon for a diagnosis to be made only as part of evaluation or treatment for infertility. Getting a diagnosis to explain symptoms is only the first step in addressing endometriosis, however. There is no cure, and most current treatments often come with significant risks or side effects but do not fully resolve a woman’s symptoms. While research progresses slowly, we still do not have a clear understanding of what causes endometriosis, how to diagnose it early without invasive procedures, how to ease symptoms, and ultimately treat and possibly cure the disease itself.

This special interview features great insight from a woman’s journey with endometriosis.  We explore her remarkable quest for answers from the range of pain relief to therapeutic treatments to risks of surgical solutions.







SEXISM IN THE WOMEN'S HEALTHCARE by: Mary Nielsen

Many women suffer with undiagnosed endometriosis. The medical field has prided itself on providing objective observations because it claims to rely on science. However, sexism lurks in hospitals, clinics and other health care facilities and the gender gap in treating pain is real. Diane Hoffman and Anita Tarzian from the University of Maryland, Francis King Carey School of Law published, "The Girl Who Cried Pain, A Bias against Women in the Treatment of Pain." Although that study is 20+ years old, little has changed.

Sexist stereotypes that see women as 'emotional' and consequently medical staff doubt a physical basis for women's pain. Men are viewed as more 'rational' and when men say they are feeling acute pain, their symptoms are taken more seriously and considered to have a physical cause. This means women receive very different care for pain management and pain diagnosis. Researcher, Karen Calderone found that women are more likely given sedatives as an answer to complaints of pain and are perceived as being anxious.

Medical professionals focus on returning the woman to a state of being calm and not investigating the cause behind their pain. The sedatives can then make the women seem calmer from outside appearance, while their medical condition can continue to worsen as they remain undiagnosed. Undiagnosed endometriosis has enormous repercussions for a woman. Life altering heavy bleeding, cramping and pain can lead to infertility, anemia, and internal adhesions requiring surgery. 

Education toward gender bias and addressing women's pain is needed to allow earlier diagnosis with a non-invasive technology like ultrasound. 




Elevating Women's Wellbeing at Work
Insights from the US Surgeon General's Report

Written by: Joyce Gregory, MD

Promoting the mental health and wellbeing of women in the workplace remains paramount in today’s dynamic post COVID pandemic work landscape. Work plays a pivotal role in shaping the health, wealth, and overall wellbeing of women. Ideally, work provides women with the means to support themselves and their families while also offering a sense of purpose, opportunities for growth, and a supportive community. When women thrive in the workplace, they are more likely to experience both physical and mental wellness, contributing positively to their work environments.

Despite facing challenges like economic disparities, educational debts, and housing instability, organizations have the power to support women's mental health and wellbeing. Leaders and employees can rethink the role of work in women's lives and explore strategies to better support their needs. By prioritizing women's health and happiness at work, organizations can create environments where women can thrive both personally and professionally.

The US Surgeon General's 2022 report on Workplace Mental Health and Well-being offers a comprehensive framework that outlines five essential components designed to meet the unique needs of women in the workforce. Let's explore how these essentials can cultivate workplaces that prioritize women's well-being and professional growth.

Ensuring Protection from Harm
Prioritizing workplace safety is critical, particularly for women who may face heightened risks due to various factors such as discrimination and violence. Organizations must diligently adhere to regulations, improve policies, and collaborate with female employees to ensure a safe work environment.
Adequate rest is essential for the physical and mental well-being of women in the workplace while insufficient rest can lead to increased risks of injuries and burnout. Workplace leaders should consider factors like working hours and provide opportunities for rest to support the well-being and productivity of female employees.

Supporting mental health is crucial, especially for women, to combat stigma and foster inclusive cultures. Organizations can achieve this by providing training, enhancing Employee Assistance Programs (EAP), and ensuring comprehensive healthcare coverage.

Fostering Connection & Community
Fostering a sense of belonging in the workplace is paramount, particularly for women. Encouraging social interaction and breaking down barriers can cultivate positive relationships and shield against bias. Leaders must strive to create inclusive environments where every woman feels empowered to voice her thoughts.

Building trust among female colleagues is key. Leaders should facilitate opportunities for team members to bond, fostering empathy and support, particularly during challenging times. Strong workplace relationships not only enhance performance but also drive innovation, highlighting the importance of transparent communication.

In today's remote or hybrid work setups, promoting collaboration is essential. Leaders should advocate for teamwork, facilitate regular communication, and provide effective collaboration tools. Addressing broader social issues can further strengthen bonds among women, fostering a supportive environment.

Striking Work-Life Harmony
Achieving work-life balance is a common challenge, yet crucial for women's well-being. Granting women autonomy over their work methods and providing flexibility in tasks, schedules, and locations can mitigate conflicts and build trust. Implementing family-friendly policies and respecting boundaries between work and personal time are also essential.

Embracing Mattering at Work
Recognizing the contributions of women in the workplace is vital for fostering a sense of belonging and purpose. This involves providing fair compensation, engaging women in decision-making processes, fostering gratitude and recognition, and aligning individual work with the organizational mission. Empowering women enhances morale and organizational commitment.

Nurturing Opportunity for Growth
Providing women with opportunities for growth and learning is paramount. Companies should offer quality training, education, mentoring programs, and clear pathways for career advancement. Ensuring equitable distribution of opportunities and offering relevant feedback are essential for women's career development and fulfillment.

In the post-pandemic era, workplaces have a unique chance to prioritize women's mental health and well-being, fostering resilience and success. The Surgeon General’s 2022 Framework for Workplace Mental Health & Well-Being serves as a roadmap for creating supportive environments. Sustainable change requires dedicated leadership that amplifies the voices of women. I encourage you to explore the full report to gain deeper insights into fostering women's wellbeing in the workplace and creating inclusive environments for all.

 

DR. JOYCE GREGORY holds over two decades of professional experience as a clinical psychiatrist specializing in addictions and mental health treatment programs.  She is dedicated to advancing performance-based solutions in both the healthcare and education sectors to enhance patient outcomes and academic achievements. She is deeply passionate about utilizing her clinical expertise and data-driven approach not only in healthcare but also in education to bridge the gap between medical science and industry. Dr. Gregory is also a recognized clinical speaker and a published educator.  Her latest educational contribution to mental health and wellness is in an upcoming series by BALANCE & LONGEVITY (WHC-TV) / Women's Health Collaborative) set to launch in the summer of 2024. 

Public Service Annc.


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SURVIVOR STORES: "Silenced No More: The Endometriosis Warrior's Battlecry"

  Written by:  Ciji Castro For three decades, I have battled the silent monster within-- endometriosis. It started at the young age of nine ...