Endo Battery

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When we peel back the layers of healthcare access for endometriosis and adenomyosis sufferers, a tangled web of systemic biases and inequalities is revealed. Joined by the insightful Jen Moore, our latest episode delves into the heart-breaking narratives from all corners of the globe, including the stark discrimination unmarried women in India face and the prolonged wait times that disproportionately affect black women in the UK. We confront the distressing realities that income, culture, and race play in healthcare, scrutinizing the obstacles specialists grapple with in their quest to deliver affordable, expert care within the constraints of insurance and private practice.

Imagine the frustration of navigating medical misinformation, where even the experts falter. Jen and I share our own stories of advocating for accurate treatment in a sea of inaccuracies that permeate even the most esteemed medical texts. We dissect the dangerous misconceptions, like the myth of hysterectomies as a cure-all for endometriosis, which only scratch the surface of the broader issue. It's an unfiltered conversation on the vital need for patients to arm themselves with knowledge, push for comprehensive medical records, and challenge the status quo of medical care, especially when chronic illnesses cast long shadows on one’s quality of life.

Jen's journey from personal struggle to a beacon of advocacy is nothing short of heroic. Through heartfelt stories of advocacy and the emotional toll of chronic pain, we underscore the importance of individualized treatment paths and the nuances of long-term rehabilitation. This episode is an empowering reminder of the power of community, the significance of multidisciplinary approaches to treatment, and the ongoing fight for better, more compassionate care. Pour yourself a comforting beverage and join us as we offer support, knowledge, and a shared sense of purpose to those navigating the complexities of endometriosis and adenomyosis.

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When Jen Moore first experienced the agony of endometriosis and adenomyosis at just eleven years old, little did she know that her pain would ignite a fierce advocacy for global awareness and change. Join us at the table for an enlightening conversation with Jen, who candidly details her journey from suffering in silence to becoming a beacon of hope for countless individuals dealing with these often misunderstood conditions. Her poignant narrative is a testament to resilience, as she recalls facing a healthcare system fraught with dismissal and misunderstanding, and how her quest for validation evolved into a powerful movement with her project "They Said What?".

Amidst Jen's compelling story, we tackle the broader issues that underscore the patient-provider divide, especially in the realm of chronic illnesses like endometriosis. We dissect the trauma inflicted by healthcare gaslighting and structural inefficiencies plaguing systems such as the NHS and U.S. insurance-based models that frequently prioritize cost over patient wellbeing. This episode isn't just about the challenges; it's an urgent call to action for comprehensive healthcare reform, the imperative inclusion of endometriosis education in medical curricula, and the provision of much-needed mental health support for those in the grips of this full-body disease. Tune in for an episode that promises not only to enlighten but also to empower in the face of chronic health battles.

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Postmenopausal endometriosis: a challenging condition beyond menopause. Menopause. 

https://pubmed.ncbi.nlm.nih.gov/38531006/

Endometriosis in Menopausal Women-A New Age Is Coming? Literature Review. Life (Basel)

https://pubmed.ncbi.nlm.nih.gov/38672755/
Patient experiences of endometriosis diagnosis: A mixed methods approach

https://pubmed.ncbi.nlm.nih.gov/37961031/

Demographic Correlates of Endometriosis Diagnosis Among United States Women Aged 15-50. J Minim Invasive Gynecol.

https://www.jmig.org/article/S1553-4650(24)00200-0/abstract
Presence of endometriosis and chronic overlapping pain conditions negatively impacts the pain experience in women with chronic pelvic-abdominal pain: A cross-sectional survey. Women's Health (Lond).

https://pubmed.ncbi.nlm.nih.gov/38682290/#:~:text=Plain%20language%20summary-,Presence%20of%20endometriosis%20and%20chronic%20overlapping%20pain%20conditions%20negatively%20impacts,COPCs)%20and%20greater%20pain%20symptomatology%2C

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TW* Pregnancy loss, infertility, suicidal ideation 

When Casey Berna, a fierce clinical social worker and endo warrior, graced our podcast, the air buzzed with the spirit of advocacy and the unwavering strength of those battling endometriosis. Her story is one of transformation—from personal trials with endometriosis and infertility to a beacon of hope and guidance for thousands. Join us as we navigate the often unseen trials of chronic illness and mental health, spotlighting Casey's remarkable journey and her tireless work in patient advocacy, including her influential role in shaping the National Action Plan for Endometriosis.

The support that cocoons us in our darkest moments can be as crucial as the air we breathe. This episode sheds light on the silent warriors—the caregivers who stand by those grappling with endometriosis. We share invaluable resources and insights to aid in understanding and managing the emotional weight that caregivers shoulder. Through candid conversations, we reveal the emotional toll on those caring for loved ones, and how fostering empathy within support systems can build resilience and understanding in the face of chronic illness.

Empowerment threads through our discussion as we underscore the importance of educating young people about their bodies and conditions like endometriosis. By dismantling the barriers of secrecy and shame stitched into past generations, we pave the way for open dialogue and community support. Our exploration culminates in recognizing the solace that communal bonds provide to those feeling isolated by their condition, and how discovering purpose through advocacy can reignite a sense of control and belonging. Casey and I invite you to pour a cup of tea and join a table ringed with shared experiences, understanding, and an ironclad community spirit.

https://www.caseyberna.com/

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Joining me at the table is, Dr. Naomi Whittaker, a visionary in restorative reproductive medicine, to explore the fertile yet challenging terrain of endometriosis and its impact on fertility. Dr. Whittaker's innovative approach marries cutting-edge research with minimally invasive surgery and bioidentical hormones, charting a course for those navigating infertility that may circumvent the need for traditional IVF treatments. Our enlightening conversation sheds light on the often overlooked symptoms of endometriosis, revealing how a deeper understanding could pave the way to improved reproductive health.

As we traverse the complexities of conditions like adenomyosis and endometriosis, we unravel the critical implications these have on fertility and the profound influence a surgeon's skill can have on patient outcomes. Dr. Whittaker highlights the path to patient autonomy, emphasizing the value of thorough preparations for surgery, including the need to address uterine infections and inflammation. It's a compassionate reminder of the evolving nature of these conditions and the necessity for patient-centered care, striking a chord with anyone yearning for a more comprehensive understanding of the intricate dance between surgical intervention and nature's own fertility processes.

In our final chapters, we delve into the often-misunderstood world of hormones and their pivotal role in fertility, as well as the emotional odyssey that accompanies infertility. Dr. Whittaker's insights into the potential of bioidentical hormones to alleviate not just physical but also emotional suffering, offer a beacon of hope. We confront the silent struggles and the imperative of emotional support, encapsulating the essence of a journey marked by resilience and the search for meaning beyond biological ties. So pour yourself a comforting beverage and join us for a heartfelt episode that promises to arm you with knowledge and fill you with hope.

https://rrmacademy.org/

Dr. Whittaker's Website

https://www.instagram.com/napro_fertility_surgeon?igsh=YXdlcTh4MmhmMHlh

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Discover the harrowing yet hopeful journey through the maze of endometriosis and adenomyosis care with our guest expert Dr. Abhishek Mangeshikar. Experience the solidarity of shared struggles as we dissect the arduous path to an accurate diagnosis and the potential pitfalls of repeated surgical endeavors. Dr. Mangeshikars insights highlight the indispensability of multidisciplinary teams and the promise of alternative therapies in the chronic pain battleground. We also confront the daunting specter of disease recurrence and weigh the long-term consequences of hormonal suppression therapies, while pondering their apparent overuse in certain healthcare systems. It's a dialogue that not only empathizes with the fears and frustrations but also emboldens listeners with expert knowledge and strategies for navigating the complex healthcare landscape of these pervasive conditions.

Embark on a global odyssey of endometriosis management with us as we compare how cultural and demographic factors shape the diagnosis and treatment across the world. Dr. Mangeshikar and I investigate the significance of early detection and the role it plays in constructing effective treatment plans, including the potential enlightenment an international study might offer. Delving into the heart of healthcare disparities, this episode offers a critical look at the research hurdles faced by private practitioners and the imperative for adaptable treatment blueprints. Listen as we shed light on the French approach to centralized data collection and what it could mean for the progression of endometriosis care. It's an episode brimming with revelations that empower patients and practitioners alike to forge a path toward more comprehensive and personalized healthcare.

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Unveil the mysteries of endometriosis as it intersects with the rich tapestry of cultural diversity in my latest sit-down with Dr. Abhishek Mangeshikar from the Indian Center for Endometriosis. Dr. Mangeshikar, a giant in the world of excision surgery, shares his expertise on how environmental factors like diet impact this pervasive condition. Our conversation sheds light on the startling under diagnosis of endometriosis across the world. We explore the significance of traditional diets alongside the global variations in disease severity. This is an episode replete with insights that promise to broaden your understanding of endometriosis and its multifaceted global impact.

Imagine living with a condition that intertwines with your daily diet, causing an uproar in your digestive system. This reality is faced by many with bowel endometriosis, a topic I examined in-depth with Dr. Mangeshikar. We uncover why this variant of endometriosis eludes diagnosis and discuss the precision required in surgical treatments. The silver lining we reveal is the transformative relief patients often feel following successful excision surgery, which may alleviate the dietary sensitivities that have long plagued them. This episode is a beacon of hope, illuminating the path to mitigating the gastrointestinal havoc wreaked by this disease.

Wrapping up, our discussion takes a crucial turn towards the holistic approach needed in managing a patient's journey through multicondition care. Dr. Mangeshikar and I tackle the hard truths about the persistence of symptoms post-surgery, such as chronic fatigue and bloating, and emphasize the importance of managing expectations. We also underscore the importance of patient advocacy and the tireless journey towards accurate diagnosis and comprehensive treatment. Every individual's battle with endometriosis is unique, and this powerful conversation underscores the necessity of personalized care and the strength found in advocacy. Join us for part one of a profound exploration into the world of endometriosis care, where every story matters and every voice can spark change.

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https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10957595

Chiarle G, Allais G, Sinigaglia S, Airola G, Rolando S, Bergandi F, Micalef S, Benedetto C. Acupuncture for pain and pain-related disability in deep infiltrating endometriosis. Front Pain Res (Lausanne). 2024 Mar 8;5:1279312.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10956985

Wang Y, Li W, Ha C. A large-scale causal analysis of gut microbiota and endometriosis associated infertility: A Mendelian randomization study. Medicine (Baltimore). 2024 Mar 22;103(12):e37383.

https://www.cghjournal.org/article/S1542-3565(24)00286-6/pdf

Simons M, Cline M, Gubbels A, King C, Lembo A, Lupe S. Endometriosis is Associated with Higher Healthcare Utilization and Upper Gastrointestinal Symptoms. Clin Gastroenterol Hepatol. 2024 Mar 19:S1542-3565(24)00286-6.

https://www.jogc.com/article/S1701-2163(23)00606-0/fulltext

Lee CE, Allaire C, Williams C, Bedaiwy MA, Noga H, Hanley GE, Lisonkova S, Albert A, Yong PJ. Outcomes After Surgery at an Interdisciplinary Centre of Expertise for Endometriosis and Pelvic Pain in Canada: A Prospective Cohort Study. J Obstet Gynaecol Can. 2024 Feb;46(2):102246.

https://journals.sagepub.com/doi/10.1177/03331024241235210

Selntigia A, Exacoustos C, Ortoleva C, Russo C, Monaco G, Martire FG, Rizzo G, Della-Morte D, Mercuri NB, Albanese M. Correlation between endometriosis and migraine features: Results from a prospective case-control study. Cephalalgia. 2024 Mar;44(3):3331024241235210.

Hormone medication could increase risk of brain tumours, French study finds

https://www.theguardian.com/society/2024/mar/27/hormone-medication-brain-tumours-risk-progestogens-study

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When Shannon Cohen Stepped back from her legal career to shine a light on endometriosis through film, she redefined the landscape of women’s health advocacy. As our remarkable guest, Shannon recounts her own harrowing experiences with endometriosis, offering an unfiltered glimpse into the realities of these conditions. Her transformation into a filmmaker and social impact strategist gave rise to "Below the Belt" and "Endo What?," films that serve as a rallying cry for awareness and action. Listen in as we unravel Shannon's journey, where her daughters' futures fueled a fire for advocacy, and discover how storytelling can become an extraordinary force for bridging knowledge gaps and sparking critical conversations.

This episode is a battle cry against the misinformation plaguing endometriosis awareness, emphasizing the dire need for research and inclusion in health policies. As we tackle the complexities of this disease, Shannon helps us understand why it is imperative to enhance research efforts for non-invasive diagnostics and targeted therapies. Our dialogue underscores the power patients hold when they become advocates for their own health, armed with credible, science-backed information. Join us for a compelling exploration of how lifestyle choices can significantly influence personal health, and witness how Shannon Cohn's unwavering resolve is forging a path toward meaningful change in the realm of women's health advocacy.

https://www.endowhat.com/
https://www.belowthebelt.film/

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The following links are to the articles, studies, and stories in this episode. It's time to play detective and look at all the evidence!

Attitudes and perceptions of affected women towards endocrine endometriosis therapy: an international survey based on free-word association networks

https://academic.oup.com/humrep/article/39/1/83/7330129?login=false

Robot-assisted laparoscopy does not have demonstrable advantages over conventional laparoscopy in endometriosis surgery: a systematic review and meta-analysis

https://link.springer.com/article/10.1007/s00464-023-10587-9

Endometrial Stem Cells: Orchestrating Dynamic Regeneration of Endometrium and Their Implications in Diverse Endometrial Disorders

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10797688/

Emerging bacterial factors for understanding pathogenesis of endometriosis

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10805679

The quality, suitability, and readability of web-based resources on endometriosis-associated dyspareunia: A systematic review

https://journals.sagepub.com/doi/10.1177/14604582241231151

The Impact of Endometriosis on Pregnancy

https://www.mdpi.com/2075-4426/14/1/126

Woman with ‘debilitating’ chronic pain waits decades for endometriosis diagnosis

https://globalnews.ca/news/10265850/ontario-30-year-wait-endometriosis-diagnosis

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