Endo Battery

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Join us for an enlightening conversation with Heather Florio, CEO of Desert Harvest, as she shares her extraordinary journey in advocating for pelvic and sexual health. Heather discusses the foundation of Desert Harvest, a company born from an accidental discovery of aloe vera’s healing properties for interstitial cystitis, and how her personal battles with chronic health conditions drive her mission. Discover the innovative strides her company has made under her leadership, showcasing products designed to improve the lives of women dealing with issues like endometriosis and chronic uterine fibroids.

Explore the promising synergy between CBD and aloe vera in addressing neuropathic pain, backed by research from McGill University. We dive into the significant role of pelvic floor therapy in managing pain, especially for those with endometriosis, and discuss how integrating alternative therapies with traditional medical treatments can yield the best outcomes. Heather offers valuable insights into how these approaches can work together to provide relief, highlighting the need for a balanced partnership between holistic and medical care.

Finally, we tackle the broader challenges in women's health research, including the complexities of conditions such as vulvodynia. Heather discusses innovative initiatives like the Her Health AI project, which seeks to enhance our understanding of these under-researched conditions by analyzing global health data. Through her collaboration with top-tier researchers and institutions, Heather is dedicated to advancing women's health and ensuring the integrity of health products, particularly those made from aloe vera. Join us for a compelling discussion that blends personal stories, expert insights, and a steadfast commitment to improving women's health worldwide.

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Experience the groundbreaking perspectives of disability advocacy as we sit down with Bryce Rafferty, a passionate staff attorney with the Colorado Cross Disability Coalition. Discover how his personal journey through rehabilitation in Switzerland sheds light on the stark differences in care between Swiss and American systems. As Bryce shares his firsthand experiences, you'll gain a deeper understanding of how societal values shape healthcare priorities, particularly for those with spinal cord injuries and invisible disabilities. This episode promises to empower listeners with practical advice for maintaining strong relationships with medical professionals and effectively documenting medical conditions, especially for those with invisible disabilities.

Uncover the crucial importance of accessing and safeguarding your personal medical records, a topic often overlooked but vital for anyone seeking accommodations or legal support. We highlight the role of the Equal Employment Opportunity Commission (EEOC) in ensuring diversity, equity, and inclusion in the workplace, drawing inspiration from successful legal cases. Listeners will learn about obtaining medical records without fees and the necessity of secure platforms for managing this sensitive information. Through our conversation, we equip you with the knowledge to navigate these complexities with confidence.

Finally, explore the power of collaboration among disability-focused nonprofits as we spotlight efforts in Colorado and beyond. By examining the roles of influential organizations like the Christopher and Dana Reeve Foundation, we emphasize the importance of building strong networks to tackle diverse issues such as accessibility and invisible disabilities. This episode serves as a call to action, urging you to adopt a proactive approach to advocacy and systemic change. Through active participation, we can influence disability rights and ensure that our societal values are reflected in the law, creating a more inclusive world for everyone.

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How does disability law truly protect those with invisible conditions like endometriosis? In this episode, we delve into the world of disability rights with Bryce Rafferty, a passionate attorney from the Colorado Cross Disability Coalition (CCDC). With his unique perspective as both an advocate and legal expert, Bryce reveals the challenges and triumphs of navigating the legal system for people with disabilities. From his journey as a volunteer to a lawyer, he shares how the CCDC fights for essential protections, Medicaid eligibility, and resources for those who need them most.

We explore the often-overlooked complexities of defining disabilities under the ADA and the systemic obstacles faced by individuals with chronic, invisible conditions. Learn how attending medical board meetings can drive healthcare reform and the growing impact of algorithms on Medicaid decisions. Bryce provides a powerful call to action on the importance of legal professionals, community support, and the collective fight for disability rights. Tune in for an eye-opening conversation that blends compassion with critical insights—and don’t miss our next episode as we continue this journey toward inclusivity and justice.
 

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Empowerment through knowledge is our mantra, and we invite you to be an active part of the endometriosis advocacy movement. Engage with thought-provoking articles, share your interests and questions, and understand the critical role of self-advocacy and community support. We aim to arm you with the information needed to advocate for yourself and loved ones effectively. Stay engaged, stay informed, and help us shape a hopeful future for endometriosis care by continuing the conversation beyond this episode.

The Lancet. Endometriosis: addressing the roots of slow progress. Lancet. 2024 Oct 5;404(10460):1279.

 Ann Thomas, MD, MPH for Medscape. "Does the Road to Treating Endometriosis Start in the Gut?" Medscape, 2024, 

New Therapeutics in Endometriosis: A Review of Hormonal, Non-Hormonal, and Non-Coding RNA Treatments

What's the delay? A qualitative study of women's experiences of reaching a diagnosis of endometriosis

Addressing Challenges in Endometriosis Pain Communication Between Patients and Doctors: The Role of Language

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Join us for a powerful episode with Dr. Allison Bontempo, postdoctoral research fellow at Rutgers Robert Wood Johnson Medical School, as we uncover the complexities of endometriosis and the lived experiences of those affected. With a personal connection to the disease, Dr. Bontempo transformed a class project into a groundbreaking global study involving thousands, shedding light on the significant diagnostic delays that patients endure.

In this episode, we explore the critical role of patient-provider communication in shaping both mental and physical health outcomes. Dr. Bontempo shares insights into how the dismissal of patient experiences impacts care and how her research is bridging the gap between clinical practices and patient needs. We dive deep into ethical considerations, balancing personal experiences with professional research, and the power of inclusivity in medical studies.

Discover how social media is amplifying diverse patient voices, and learn about innovative tools, like new measures to assess perceived invalidation in healthcare, that aim to drive meaningful change. Dr. Bontempo also discusses the importance of community and collaboration in advancing the care of chronic illnesses, emphasizing the need for continued education among clinicians.

This episode is a must-listen for anyone invested in improving healthcare outcomes for endometriosis and other chronic conditions. It’s more than just a conversation—it’s a call to action to contribute to research that can change lives and reshape the future of compassionate healthcare.

https://www.allysoncbontempo.com/
@acbontempo

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What happens when two of the most prevalent gynecological conditions intersect? Join us as Dr. Sadikah Behbehani and Dr. Lora Liu shed light on the complexities and common misconceptions surrounding endometriosis and PCOS. These esteemed experts guide us through the landscape of these conditions, emphasizing that although both affect a significant number of women, their co-occurrence is more about chance than any causal relationship. Through their insights, we aim to clarify the confusions that often arise between these conditions and highlight the importance of precise diagnosis for effective treatment.

Discover the intricate process of diagnosing PCOS using the Rotterdam criteria, an approach that demands patience, particularly in young women. Dr. Behbehani and Dr. Liu walk us through the genetic and lifestyle factors that may predispose certain ethnicities to PCOS and discuss strategic interventions like weight management to alleviate symptoms. The conversation takes an enlightening turn as we unravel the frequent misdiagnoses between PCOS and endometriosis—a misunderstanding that can lead to inappropriate treatments and prolonged patient distress.

Our discussion doesn't stop at diagnosis; we venture into the realm of treatment options, from hormonal management to the evolution of surgical procedures like ovarian drilling. Dr. Liu shares her experiences with the emotional and transformative effects of excision surgery, painting a vivid picture of the impact proper treatment can have on patients' lives. We also address systemic issues in women's healthcare, such as the inadequacies in endometriosis treatment and the challenges faced by patients navigating infertility and IVF. Tune in for a thought-provoking conversation that empowers both patients and healthcare providers to pursue informed and compassionate care.

Dr. Sadikah Behbehani-The Center for Endometriosis & Fertility
Dr. Lora Liu

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Living with chronic illnesses like endometriosis and adenomyosis can feel like a constant battle against societal expectations, and Chelsea and Alanna, know this struggle all too well. We've discovered that managing our lives with these conditions often resembles trying to fit the contents of a 10-inch dinner plate onto a 6-inch one—an impossible task that only invites stress and anxiety. Join us as we share our personal journeys of setting boundaries and being realistic about what we can handle. From prioritizing staples like faith, family, and community to learning how to communicate our limitations effectively, we explore the delicate balance of maintaining our health and well-being amidst the pressure to always be productive.

Navigating the healthcare system can be daunting, especially when living with complex conditions like endometriosis. Chelsea and Alanna open up about their experiences with medical professionals who dismissed our concerns, and how finding the right doctor who truly listens can be life-changing. We discuss the importance of advocating for oneself and the systemic issues plaguing women's health care. With the power of community support, we aim to empower others, encouraging self-love and growth through shared stories of grief, anger, and perseverance. Discover how embracing these challenges can be a catalyst for personal growth and change, and how serving others can offer profound healing on our journey together.

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Ever wondered how a routine ER visit for kidney stones could change the course of someone's life? Join us as Chelsea sits down with Alanna to uncover her harrowing yet empowering journey with endometriosis and adenomyosis. From the early, often-misunderstood symptoms like frequent UTIs and painful periods to a particularly distressing experience just before her first wedding anniversary, Alanna's story sheds light on the critical need for accurate diagnosis and compassionate medical care.

Discover the emotional and physical rollercoaster of treatments Alanna has endured, from ineffective NSAIDs to misleading drugs. We'll uncover the debilitating impact of chronic pain and severe bleeding, ultimately discussing the weighty decisions surrounding hysterectomy and ovary removal. Alanna's personal narrative serves as a guide for making informed medical choices, highlighting the importance of patient education and the long-term effects of surgical interventions.

Navigate the complexities of managing hormone health and overlapping conditions such as hypermobile Ehlers-Danlos Syndrome (EDS) with us. Through the support of Endo Village, a nonprofit advocacy organization, we emphasize the importance of self-advocacy and community support. Using the metaphor of a six-inch dinner plate versus a ten-inch dinner plate, we illustrate the importance of managing one's limited capacity thoughtfully. Join us for part one of this insightful series as we share personal journeys and encourage ongoing advocacy for oneself and loved ones.

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Ever wondered why so many surgeons lack proper training in bowel endometriosis? In this episode of Endo Battery Fast Charged, we uncover startling research that points to a significant gap in medical education,  groundbreaking findings that reveal how endometriosis can alter brain activity, the outcome after deep endometriosis surgery, US healthcare system’s support for endometriosis patients, and more.

Click the links below to take a deeper dive into the research!

-Assessment of Education and Management of Endometriosis among Colorectal Surgeons and Residents

-Psychological characteristics and structural brain changes in women with endometriosis and endometriosis-independent chronic pelvic pain

-Long-Term Follow-Up Regarding Pain Relief, Fertility, and Re-Operation after Surgery for Deep Endometriosis

-Women with endometriosis in the United States: National Survey of Family Growth, 2011–2019

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• Is traditional endometriosis diagnosis failing patients? 

   - Dr. Ramiro Cabrera, a specialist from Mexico, shares how his sister’s battle with stage 4 endometriosis inspired his mission to revolutionize care using mapping and excision surgery.  

• Why pre-surgical mapping matters:

   - Learn how the outdated US staging system falls short and discover the NCM protocol, a groundbreaking technique offering precise pre-surgical visualization.  
   - Dr. Cabrera highlights **Dr. Luciana Chamie’s** work and the need for OBGYNs to better understand endometriosis.  

• Global challenges in care: 

   - Explore how financial incentives drive ablation procedures, often harming patient outcomes.  
   - Countries like El Salvador lead with new standards in care, showcasing the importance of proper diagnostics and timely interventions.  

• Key Topics:

   - Excision surgery, mapping, global care disparities, and the push for improved treatment options.  

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