In this episode of the Bendy Bodies Podcast, Dr. Linda Bluestein speaks with sexual health experts Dr. Irwin Goldstein & Sue Goldstein. This amazing husband and wife team share insights on common issues such as vestibulodynia, libido challenges, and treatment options ranging from physical therapy to hormone therapy. They explore the often-overlooked intersection of joint hypermobility conditions like Ehlers-Danlos Syndrome (EDS), Mast Cell Activation Syndrome (MCAS), and Postural Orthostatic Tachycardia Syndrome (POTS) with sexual dysfunction. They discuss how connective tissue disorders impact sexual health, the role of the sacral nerve in arousal and pain, and how patients can advocate for better care. Whether you're struggling with pain during intimacy or looking for solutions, this episode offers practical advice and hope.

Takeaways:

Connective Tissue Impacts Sexual Health: Conditions like EDS can affect the sacral nerve, leading to pain, discomfort, and sexual dysfunction that many doctors overlook.

Mast Cell Dysfunction Can Trigger Pain: MCAS can cause issues such as vestibulodynia, leading to painful penetration and impacting quality of life beyond intimacy.

Pelvic Floor Therapy is Essential: Specialized pelvic floor physical therapy can significantly improve sexual function and reduce pain for individuals with hypermobility disorders.

Hormone Therapy May Help: Addressing hormonal imbalances, particularly testosterone and estrogen levels, can improve symptoms of vaginal dryness and pain.

Communication is Key: Open conversations with partners and healthcare providers about sexual health concerns are crucial for finding the right treatments and maintaining intimacy.

PS. The vestibule refers to the vulva (female external genitalia) between the labia minora (two inner skin folds that surround the vaginal opening).

PSS. Neuroproliferative vestibulodynia is where there are too many nerve endings in the vestibule tissue.

Check out Ep 116 with Dr Feigenbaum to learn more about Tarlov Cysts, which were discussed in this episode: https://youtu.be/Uq4OrVa6deM

Connect with YOUR Hypermobility Specialist, Dr. Linda Bluestein, MD at https://www.hypermobilitymd.com/.

Find Bendy Bodies episode transcripts here.

Thank YOU so much for tuning in. We hope you found this episode informative, inspiring, useful, validating, and enjoyable. Join us on the next episode for YOUR time to level up your knowledge about hypermobility disorders and the people who have them.

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In this episode of the Bendy Bodies Podcast, Dr. Linda Bluestein chats with functional medicine expert Dr. Jill Carnahan about tackling complex conditions like Mast Cell Activation Syndrome (MCAS), Ehlers-Danlos Syndrome (EDS), and POTS. A Breast Cancer and Crohn's disease survivor, Dr. Carnahan shares her unique approach to identifying root causes of chronic illness using functional medicine principles. They explore the triad of MCAS, EDS, and dysautonomia, and discuss tools like the limbic system, toxin reduction, and gut healing to improve patient outcomes. This episode is packed with practical insights for navigating chronic illness and optimizing your health.

Takeaways:

Mast Cells as the Root Driver: Dr. Carnahan explains how mast cells play a central role in triggering symptoms in EDS, POTS, and MCAS, often driven by infections, toxins, or trauma.

Functional Medicine Seeks the Root Cause: A functional medicine approach looks beyond symptoms to uncover underlying triggers like mold, Lyme disease, or environmental toxins.

Limbic System Reset is Critical: Addressing the limbic system through the DNRS or The Gupta Program can calm overactive mast cells and reduce overall symptom severity.

Diet Plays a Vital Role: A low-histamine diet can be transformative for people with MCAS, reducing inflammation and improving gut health.

Small Steps Lead to Big Changes: Healing requires incremental improvements, like reducing toxic exposure, supporting adrenal function, and improving sleep and nutrition.

Connect with YOUR Hypermobility Specialist, Dr. Linda Bluestein, MD at https://www.hypermobilitymd.com/.

Thank YOU so much for tuning in. We hope you found this episode informative, inspiring, useful, validating, and enjoyable. Join us on the next episode for YOUR time to level up your knowledge about hypermobility disorders and the people who have them.

Join YOUR Bendy Bodies community at https://www.bendybodiespodcast.com/.

Find the transcript here: https://www.bendybodiespodcast.com/mast-cells-a-hidden-trigger/#transcript

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In this solo episode of the Bendy Bodies Podcast, Dr. Linda Bluestein tackles your most pressing questions about preparing for surgery with conditions like Ehlers-Danlos Syndrome (EDS), POTS, and MCAS. Dr. Bluestein explains how the recent IV fluid shortage may affect you, which supplements to stop before surgery, and why hydration is key for successful outcomes. She also addresses the importance of communicating with your surgeon about your unique medical needs and provides practical pre- and post-surgery hacks to optimize recovery. Packed with valuable tips, this episode is a must-listen for anyone navigating surgery with chronic conditions.

Takeaways:

IV Fluid Shortages Can Impact Surgery: The recent IV fluid shortage in the U.S. means patients may receive less fluid during surgery, making pre-surgery hydration even more critical, especially for those with POTS.

Stop Certain Supplements Before Surgery: Supplements like ginger, garlic, ginkgo, ginseng, fish oil, turmeric, and CBD oil can increase bleeding risk and should be stopped 1-2 weeks before surgery.

Talk to Your Surgeon About Medications: People with POTS or MCAS may need to adjust medications before surgery. Discuss your supplements and medications with your surgical team to avoid complications.

Hydration is Essential: Going into surgery well-hydrated can make IV insertion easier and help prevent complications, especially for those with chronic illnesses like POTS.

Tailor Your Pain Management Plan: Discuss post-surgery pain management with your doctor ahead of time to ensure you have appropriate medications and tools to manage pain and prevent complications like constipation.

Connect with YOUR Hypermobility Specialist, Dr. Linda Bluestein, MD at https://www.hypermobilitymd.com/.

Thank YOU so much for tuning in. We hope you found this episode informative, inspiring, useful, validating, and enjoyable. Join us on the next episode for YOUR time to level up your knowledge about hypermobility disorders and the people who have them.

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In this episode of the Bendy Bodies Podcast, Dr. Linda Bluestein speaks with her personal physical therapist, Dr. Emily Bohan, about the often-overlooked role of pelvic floor health in people with hypermobility, EDS, and related conditions. Emily explains why pelvic floor dysfunction can cause issues like low back pain, hip instability, urinary incontinence, and constipation. She shares her expertise on how to strengthen and relax the pelvic floor safely, emphasizing why Kegels aren't always the answer. Packed with practical tips, including "stop power peeing" and incremental exercise strategies, this episode provides actionable insights to help anyone dealing with pelvic or musculoskeletal pain.

Takeaways:

Pelvic Floor Dysfunction Affects More Than You Think: Issues like low back pain, hip pain, constipation, and urinary incontinence can often be traced to pelvic floor tension or weakness.

Kegels Aren’t Always the Solution: Many people have overly tight pelvic floor muscles, making relaxation and proper breathing more effective than strengthening exercises like Kegels.

Power Peeing is a No-No: Pushing or straining during urination can harm the pelvic floor over time, increasing the risk of prolapse and dysfunction.

Incremental Progress Prevents Flares: For hypermobile individuals, small, controlled increases in movement and load are key to building strength without worsening pain.

Pelvic Floor Therapy Is for Everyone: Pelvic floor physical therapy benefits people of all genders and ages, from postpartum women to male athletes experiencing pelvic pain.

Connect with YOUR Hypermobility Specialist, Dr. Linda Bluestein, MD at https://www.hypermobilitymd.com/.

Thank YOU so much for tuning in. We hope you found this episode informative, inspiring, useful, validating, and enjoyable. Join us on the next episode for YOUR time to level up your knowledge about hypermobility disorders and the people who have them.

Join YOUR Bendy Bodies community at https://www.bendybodiespodcast.com/.

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IG: @bohanpttraining

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In this deeply meaningful episode of the Bendy Bodies Podcast, Dr. Linda Bluestein reconnects with her very first EDS patient, Lauren Vasko. Lauren shares her remarkable story of resilience, from navigating life in a wheelchair, managing Cranial-Cervical Instability (CCI), and battling POTS, to regaining her independence and teaching art in Kenya. She reflects on her challenges with misdiagnoses, traumatic medical experiences, and the importance of self-advocacy. Lauren reveals the tools, treatments, and mindset shifts that helped her heal, including physical therapy, medications, supplements, and setting boundaries. Her message of hope reminds us that even the hardest journeys can lead to unexpected triumphs.

NOTE: Due to some technical limitations, Lauren's video will showcase lines over her frame, but it should not impact her audio or any of her amazing comments!

Takeaways:

Believe Healing Is Possible: Lauren emphasizes the importance of overcoming a “victim mentality” and truly believing in your ability to improve, no matter how severe your condition feels.

Small Wins Add Up: Success doesn’t come all at once. Lauren highlights how small changes—5% improvements—eventually added up to transformative progress in her life.

Advocate for Yourself: Lauren’s journey shows the importance of questioning medical advice, finding the right providers, and being actively involved in your care.

Physical Therapy and Traction Were Game-Changers: Specialized physical therapy, dry needling, and cervical traction played key roles in helping Lauren avoid invasive surgery for CCI (Cranial-Cervical Instability).

Set Boundaries for Health and Identity: Lauren shares the importance of not letting your diagnosis define you, setting boundaries with support communities, and finding joy in new passions like art and teaching.

Connect with YOUR Hypermobility Specialist, Dr. Linda Bluestein, MD at https://www.hypermobilitymd.com/.

Thank YOU so much for tuning in. We hope you found this episode informative, inspiring, useful, validating, and enjoyable. Join us on the next episode for YOUR time to level up your knowledge about hypermobility disorders and the people who have them.

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Instagram: @asformeandmyhealth

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In this episode of the Bendy Bodies podcast, Dr. Linda Bluestein speaks with leading autonomic specialist Dr. Satish Raj about POTS (Postural Orthostatic Tachycardia Syndrome), dysautonomia, and orthostatic intolerance. Dr. Raj delves into the complexity of these conditions, including their diverse causes, challenges in diagnosis, and innovative treatments. Learn why POTS is a "feeling faint" disorder rather than a fainting disorder, the role of compression garments and increased sodium intake, and how non-pharmacological treatments form the foundation of care. Packed with practical advice and expert insights, this episode is essential listening for anyone navigating POTS or related conditions.

Takeaways:

POTS is a "Feeling Faint" Disorder: Unlike fainting disorders, POTS is characterized by persistent symptoms of lightheadedness and discomfort without necessarily leading to fainting.

Non-Pharmacological Treatments First: Increasing salt and water intake, wearing compression garments (focusing on the abdomen and pelvis), and engaging in tailored exercise programs form the foundation of POTS management. Dr. Raj emphasizes some key details, improving the odds of success.  

Individualized Treatment Matters: Compression garments not only aid in blood flow but may also provide joint stabilization benefits for hypermobile patients.

POTS is Multifactorial: The causes of POTS are diverse, ranging from post-viral onset to structural and blood volume issues, requiring a nuanced, patient-specific approach to treatment.

Exercise Takes Time but Works: Low-resistance, reclined exercises like rowing and cycling can improve cardiac output and quality of life, but patients need to commit for at least six weeks to notice meaningful improvements.

Connect with YOUR Hypermobility Specialist, Dr. Linda Bluestein, MD at https://www.hypermobilitymd.com/.

Thank YOU so much for tuning in. We hope you found this episode informative, inspiring, useful, validating, and enjoyable. Join us on the next episode for YOUR time to level up your knowledge about hypermobility disorders and the people who have them.

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Learn about Dr. Satish Raj

Website: https://www.ehlers-danlos.com/satish-raj/

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In this informative solo episode of the Bendy Bodies podcast, Dr. Linda Bluestein, the Hypermobility MD, dives into pressing topics impacting the hypermobility community. Learn about the new anesthesia time limit policy from Anthem Blue Cross (that was then reversed), how to manage Mast Cell Activation Syndrome (MCAS), understand food allergy testing, and find the best coaching options for those with complex conditions. 

Takeaways:

New Anesthesia Policy Impacts EDS Patients: Anthem Blue Cross introduced time limits on anesthesia coverage, potentially shifting extra costs to patients if surgeries exceed these limits, making communication with providers essential. (This decision was then reversed after widespread public outcry demonstrating the importance of using our voices)

MCAS Management is Personalized: Keeping a detailed symptom journal and identifying unique triggers are critical for managing mast cell activation syndrome effectively.

Food Allergy Testing Limitations: Standard allergy tests may not reliably identify food triggers for those with MCAS, emphasizing the importance of symptom tracking and tailored elimination diets.

Coaching vs. Medical Appointments: Coaching offers faster access and flexibility for guidance, but differs from medical services as it doesn’t include prescriptions or lab orders.

Hypermobility Hacks for Surgery Prep: Stay informed about your insurance policies, maintain open communication with your healthcare team, and advocate for alternative payment or scheduling options if needed.

Modifying Supplements for Surgery: Nutritional supplements that increase bleeding risk and/or interfere with medications used for anesthesia are discussed. 

Connect with YOUR Hypermobility Specialist, Dr. Linda Bluestein, MD at https://www.hypermobilitymd.com/.

Thank YOU so much for tuning in. We hope you found this episode informative, inspiring, useful, validating, and enjoyable. Join us on the next episode for YOUR time to level up your knowledge about hypermobility disorders and the people who have them.

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In this enlightening episode of the Bendy Bodies podcast, Dr. Linda Bluestein speaks with otolaryngologist Dr. Shu Das about the unique ENT challenges faced by people with Ehlers-Danlos Syndrome (EDS). Dr. Das shares his expertise on common issues like tonsil stones, chronic sore throats, and sinus infections, while diving deep into how EDS impacts vocal cords, nasal health, and even hearing. He offers practical tips for managing symptoms, from antibiotic courses to alternative surgical approaches. Packed with advice on avoiding unnecessary surgeries and improving overall quality of life, this episode is a must-listen for anyone navigating EDS and ENT-related issues.

Takeaways:

EDS Increases ENT Vulnerability: People with EDS are prone to ENT issues like tonsil stones, chronic sore throats, sinus infections, and vocal cord dysfunction due to their connective tissue laxity.

Avoid Unnecessary ENT Surgeries: Surgery should be a last resort for EDS patients due to poor healing and higher complication risks. Alternatives like intracapsular tonsillectomy can minimize trauma when surgery is necessary.

Antibiotic Treatment Requires Adjustment: EDS patients often need longer and earlier courses of antibiotics for sinus infections and other ENT issues to ensure full recovery.

Hot Showers Are Healing: Heat and steam are beneficial for managing sinus issues, ear pain, and overall EDS symptoms, making hot showers a simple yet effective tool. Hot showers can be challenging for those with POTS and or MCAS, but for those who can tolerate them, they can be very helpful.   

Steroids Can Do More Harm Than Good: Intranasal steroids like Flonase should be avoided in EDS patients, as they weaken already fragile connective tissues, potentially exacerbating problems.

Connect with YOUR Hypermobility Specialist, Dr. Linda Bluestein, MD at https://www.hypermobilitymd.com/.

Thank YOU so much for tuning in. We hope you found this episode informative, inspiring, useful, validating, and enjoyable. Join us on the next episode for YOUR time to level up your knowledge about hypermobility disorders and the people who have them.

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Learn about Dr. Das

Website: https://www.usasinus.org/meet-dr-das

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In this episode of the Bendy Bodies podcast, Dr. Linda Bluestein speaks with two brilliant young researchers, Jeevan Mann and Delaney Kenney, about their groundbreaking work in Ehlers-Danlos Syndromes (EDS). Jeevan shares insights into using 3D skin models for understanding hypermobile EDS, while Delaney discusses her biorepository project and the hope for future treatments. They also share personal experiences navigating life with chronic illness, the importance of advocating for accommodations, and the role of community in supporting those with EDS. This inspiring conversation highlights the innovative research that could transform EDS care and diagnosis.

Takeaways:

3D Skin Models Transform Research: Jeevan explains how 3D skin equivalents provide a scalable and cost-effective way to study hypermobile EDS, enabling more replicates and faster results compared to mouse models.

Hope for a Future Without EDS: Delaney highlights how working at the Gates Institute introduced her to the possibility of treatments that could manage or eliminate EDS symptoms in the future.

Importance of Awareness: Both guests emphasize the need for broader education and awareness of EDS among medical professionals to reduce diagnosis delays and improve care.

Advocacy Makes a Difference: Advocating for oneself and seeking accommodations, even when it’s difficult, can significantly improve the quality of life for those with chronic illnesses.

Community Provides Strength: Connecting with others who share similar experiences, as well as learning from diverse approaches within the EDS community, fosters resilience and innovation.

Connect with YOUR Hypermobility Specialist, Dr. Linda Bluestein, MD at https://www.hypermobilitymd.com/.

Thank YOU so much for tuning in. We hope you found this episode informative, inspiring, useful, validating, and enjoyable. Join us on the next episode for YOUR time to level up your knowledge about hypermobility disorders and the people who have them.

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Learn about Jeevan Mann and Delaney Kenney

Instagram: @jeevanmann03 & @delaney_kenney

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In this candid solo episode of the Bendy Bodies podcast, I share my insights into Mast Cell Activation Syndrome (MCAS) and its intricate connection to hypermobile Ehlers-Danlos Syndrome (hEDS) and Postural Orthostatic Tachycardia Syndrome (POTS). Reflecting on my personal and professional perspective and cases from my practice, I discuss how MCAS may play a pivotal role in chronic pain and offer practical strategies for identifying and managing symptoms. From my first introduction to MCAS to groundbreaking results in patient care, this episode dives deep into the science and solutions for improving quality of life with these interconnected conditions. Stick around for special hypermobility hacks and helpful resources!

Takeaways:

MCAS as a Root Cause: Mast cell activation syndrome (MCAS) may be the underlying driver behind many symptoms experienced by individuals with hypermobile EDS (hEDS) and POTS, emphasizing the need for targeted treatment.

A Spectrum of Symptoms: MCAS presents a wide variety of symptoms, from pain and fatigue to GI and neurological issues, making it essential to approach diagnosis and management comprehensively.

Therapies Can Be Life-Changing: Tailored treatments for MCAS, such as antihistamines and mast cell stabilizers, can yield dramatic improvements in quality of life when appropriately managed.

Patient Advocacy is Crucial: Self-advocacy and education are vital for navigating complex conditions like MCAS, hEDS, and POTS, especially when facing medical gaslighting or misdiagnosis.

Sharing Information is Empowering: Podcasts, newsletters, and community platforms are invaluable for disseminating complex medical topics like MCAS, helping patients and providers alike understand these intricate conditions.

Show Correction: I said “Mast cells respond to external stimuli but they actually respond to internal and external stimuli (hormones etc)  

Connect with YOUR Hypermobility Specialist, Dr. Linda Bluestein, MD at https://www.hypermobilitymd.com/.

Thank YOU so much for tuning in. We hope you found this episode informative, inspiring, useful, validating, and enjoyable. Join us on the next episode for YOUR time to level up your knowledge about hypermobility disorders and the people who have them.

Join YOUR Bendy Bodies community at https://www.bendybodiespodcast.com/.

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