Endo Battery

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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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Imagine being nine years old and feeling a constant, unexplainable pain that no one seems to take seriously. That's exactly what Arleigh Cole experienced, and in this powerful episode of Endo Battery, she shares her incredible journey from those early days of fatigue and bowel issues to becoming a fierce advocate for endometriosis and adenomyosis awareness. Join me, Alanna, as we uncover Arleigh's story of enduring two surgeries, a hysterectomy, and the harsh realities of inadequate medical care. This episode shines a light on the importance of proper diagnosis, specialized treatment, and the unwavering support of a community that truly understands.

Arleigh and I dive deep into the emotional and physical challenges of living with an invisible disease. We discuss the cycles of false hope, the frustration of societal disbelief, and the profound sense of isolation that often accompanies such conditions. By sharing her personal battles and triumphs, Arleigh emphasizes the healing power of validation and community support. We also touch on the difficult transition through menopause and the impact of being constantly unseen and unheard, while highlighting the strength and resilience that comes from shared experiences.

We also explore the systemic issues plaguing women's health, from the impact of endometriosis on pregnancy and motherhood to the disparities in healthcare access and treatment. This episode tackles the misconceptions, misdiagnoses, and emotional toll of chronic fatigue and pain, and underscores the urgency of educating young women about their bodies. Through personal anecdotes and broader societal insights, Arleigh and I stress the importance of advocacy, education, and continued research to support women facing these challenges. Tune in to be inspired by Arleigh's transformation into a powerful advocate and to learn how you can contribute to raising awareness and driving change.

Thank you to our sponsor for this episode, Well-Being Pelvic Physical Therapy  

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-  Could endometriosis be the hidden cause of your unexplained pain? 
- We dive deep into the misunderstood conditions linked to endo, including my personal struggle with anterior cutaneous nerve entrapment syndrome (ACNES).  
- Discover the intriguing connection between endometriosis and rheumatoid arthritis (RA) and what recent research reveals about their relationship.  
-  Highlighting the unique medical challenges transgender and non-binary individuals face with endometriosis—empathy and inclusivity are vital!  
-  Learn about the complexities ovarian endometriomas add to endometriosis staging and the tough surgical choices they bring.  
-  Hear about Allison Bentempo’s research on symptom invalidation and the crucial disconnect between patients and clinicians.  
- An Australian study uncovers how adenomyosis, bowel endometriosis, and adhesions contribute to endo recurrence.  
-  Empower yourself with knowledge and join the conversation that could change your endometriosis journey 
Anterior Cutaneous Nerve Entrapment Syndrome: An Underestimated Diagnosis

Association between endometriosis and arthritis: results from NHANES 1999-2006, genetic correlation analysis, and Mendelian randomization study.


Transgender and non-binary people's experience of endometriosis. J Health Psychol. 2024 Aug 10:13591053241266249.


Association between Ovarian Endometriomas and Stage of Endometriosis. J Clin Med. 2024 Aug 2;13(15):4530.


 Conceptualizing Symptom Invalidation as Experienced by Patients With Endometriosis. Qual Health Res. 2024 Aug 8:10497323241253418.
@allysonbontempophd on IG


Predicting disease recurrence in patients with endometriosis: an observational study. BMC Med. 2024 Aug 7;22(1):320.

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Can intuitive eating revolutionize your relationship with food when living with endometriosis? Join us as we explore this transformative topic with registered dietitian Sarah Rae, who brings her expertise to the table. Together, we discuss how listening to your body's hunger and fullness cues can lead to healthier eating habits and improved well-being. Sarah shares her insights on overcoming societal pressures, rejecting harmful diet culture, and understanding the importance of body acceptance. Learn how intuitive eating can be a game-changer, especially for those managing the unique dietary needs that come with endometriosis.

We dive into the specifics of balancing cravings and making healthy choices post-hysterectomy, navigating the tricky waters of portion sizes, and maintaining a balanced plate. Sarah sheds light on the critical role of hormone balance in nutrition and offers practical advice such as consuming cruciferous vegetables and managing stress for better hormone health. Discover why intuitive eating might be more beneficial than following strict diets and how to establish a neutral relationship with food that prioritizes nourishment over restriction.

Finally, we explore the importance of a multidisciplinary approach to managing endometriosis through nutrition and the tools available to support this journey. From cycle tracking and food journaling to understanding the limitations and benefits of elimination diets, Sarah provides actionable steps to help you tune into your body. We emphasize the importance of working with dietitians and mental health providers, offering evidence-based care tips and resources to enhance your quality of life. Don’t miss this episode packed with valuable insights for anyone looking to improve their relationship with food while managing endometriosis.


Links
sarahraerdn.com
intuitiveeating.org
icarebetter.com
Find Food Freedom Podcast
https://a.co/d/9TlWhSe
https://a.co/d/71lMskt

Articles
Barnard ND, Holtz DN, Schmidt N, Kolipaka S, Hata E, Sutton M, Znayenko-Miller T, Hazen ND, Cobb C, Kahleova H. Nutrition in the prevention and treatment of endometriosis: A review. Front Nutr. 2023 Feb 17;10:1089891. doi: 10.3389/fnut.2023.1089891. PMID: 36875844; PMCID: PMC9983692.

Influence of diet on the risk of developing endometriosis. Joanna Jurkiewicz-Przondziono, Magdalena Lemm, Anna Kwiatkowska-Pamuła, Ewa Ziółko, Mariusz K. Wójtowicz. DOI: 10.5603/GP.a2017.0017. Ginekol Pol 2017;88(2):96-102.

Marcinkowska, A.; Górnicka, M. The Role of Dietary Fats in the Development and Treatment of Endometriosis. Life 2023, 13, 654. https://doi.org/10.3390/ life13030654

Barnard, N.D., Holtz, D.N., Schmidt, N., Kolipaka, S., Hata, E., Sutton, M., Znayenko-Miller, T., Hazen, N.D., Cobb, C., & Kahleova, H. (2023). Diet associations in endometriosis: a critical narrative assessment with special reference to gluten. Frontiers in Nutrition, 10. https://doi.org/10.3389/fnut.2023.1166929

Social Media (Intuitive Eating)

@endonutrition.pnw

@find.food.freedom

@diet.culture.rebel

@ameeistalking

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