DEARG: Delivering Endometriosis and Adenomyosis Resources and Guidance

• Embracing Yoga for Endometriosis and Migraine Relief with Jane Whelan

  DEARG Podcast Episode 22: Embracing Yoga for Endometriosis and Migraine Relief with Jane Whelan Episode Overview In this episode of the DEARG podcast, Kathleen sits down with Jane Whelan, a seasoned yoga instructor from Dublin, to discuss her personal journey and professional insights into managing endometriosis and migraine. Jane shares her experiences, from being diagnosed with endometriosis and migraine to finding solace and strength through yoga. This episode is a must-listen for anyone seeking holistic ways to manage chronic pain and improve their quality of life. Jane’s Personal Journey:   - Diagnosed with endometriosis at 25.   - Early experiences with migraine and how it intersected with her endometriosis.   - Challenges faced during her time in the events industry and her subsequent health issues. Professional Experience:   - Work with the Migraine Association of Ireland and the European Headache Alliance.   - Transition into yoga, starting her teacher training over 12 years ago. Yoga as a Self-Management Tool:   - How yoga helped Jane manage her symptoms and pain from both endometriosis and migraine.   - Practical applications of yoga, including gentle movements, breath work, and relaxation techniques.   - The importance of having a variety of tools for day-to-day management of chronic conditions. Challenges and Realisations:   - Jane's struggles with maintaining physical activity due to pain and how yoga provided a flexible solution.   - Realisations about the interconnectedness of stress, anxiety, and chronic pain.   - Using yoga to regain confidence and trust in her body’s abilities. Practical Tips and Insights:   - Specific yoga practices that helped Jane during painful flare-ups and IVF cycles.   - The role of gentle movements and breathwork in managing chronic pain.   - Importance of finding what works for each individual and adapting practices accordingly. Resources and Links Migraine Association of Ireland: https://migraine.ie/ European Headache Alliance: https://www.emhalliance.org/  Jane Whelan on Instagram https://www.instagram.com/yogaformigraine/

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• Empowering: Dearbhail Ormond on Building Community with the Frendo App

  In this week's episode of the DEARG podcast, Kathleen welcomes Dearbhail Ormond, an advocate for endometriosis and adenomyosis awareness and the founder of the Frendo app and Frendo at Work program. Dearbhail shares her personal journey with endometriosis, which began with symptoms in her teens and led to an 18-year struggle for a diagnosis. Her experiences of isolation and frustration inspired her to create the Frendo app—a community-driven symptom tracker designed to support those with endometriosis and adenomyosis. The Frendo app offers an extensive symptom tracker and a supportive community where users can share their stories and access credible resources. Dearbhail emphasises the importance of community in combating the loneliness often associated with chronic illnesses. She also discusses the transition from a corporate career to founding her own venture, highlighting the challenges and rewards of this journey. Dearbhail introduces the Frendo at Work program, aimed at educating employers about the importance of supporting employees with chronic conditions like endometriosis. She discusses the positive shift in workplace health conversations and the critical role of employers in creating accommodating and inclusive environments. Listeners will find valuable insights into the creation and impact of the Frendo app and the Frendo at Work program, as well as Dearbhail’s dedication to improving the lives of those affected by endometriosis and adenomyosis. Frendo Information: For more information on Frendo and Frendo at Work, visit http://www.frendo.co.uk or email [email protected] Tune in to this episode for an inspiring discussion on endometriosis, community support, and the importance of workplace inclusivity.

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• Breaking Barriers: Psychological Support and Coping Strategies for Endometriosis and Chronic Conditions

  Dr Neesha Patel is an expert in coaching people to make positive lifestyle behaviour changes and maintain health and wellbeing, using the latest scientific research and psychological tools. This includes support with managing long-term conditions such as type 2 diabetes, pre-diabetes, long covid, chronic pain, as well as, difficulties with mental health, poor sleep, weight loss and women’s health including menopause and endometriosis. Join us to discover Neesha’s wealth of knowledge and expertise on how you can manage the psychological impact of a chronic condition such as endometriosis using some simple evidence-based coping strategies to reduce the emotional burden and reset your mind and body to feel good. Dr Neesha Patel is a UK-qualified Independent Health Psychologist and the founder of Evoking Health Ltd. Neesha founded Evoking Health Ltd in 2022 after working across long-term chronic health conditions and obesity in the NHS. She was awarded her PhD from the University of Manchester in 2013 for her research in managing long-term conditions in particular type 2 diabetes in the South Asian population and the role of social networks in supporting management of this condition. Neesha currently works part-time in the NHS, Diabetes Centre as well as Evoking Health Ltd. Her mission for Evoking Health Ltd is to empower and motivate people as many people to break old habits and create new by changing the important connection between our thoughts, emotions and actions, to help people to sustain long-lasting habits for a healthier, happier and more fulfilling life. Neesha provides workshops, webinars, individual therapy and hosts Mind Body Retreats in her local community to help people to experience the benefits of mind body connection for their health and wellbeing. Instagram @evokinghealth_drp LinkedIn www.linkedin.com/in/dr-neesha-patel-91385066 Takeaways: **The Importance of Multidisciplinary Care**: Managing chronic conditions like endometriosis requires a holistic approach, incorporating medical, psychological, and lifestyle support. **Psychological Support**: Psychological interventions play a crucial role in managing chronic conditions. Many patients experience fear, trauma, and not being believed, which can deter them from seeking help. Psychological support can help in breaking down these barriers. **Identifying and Addressing Unhelpful Behaviors**: Patients often develop unhelpful coping mechanisms, such as overeating or other behaviors that exacerbate their condition. Identifying these behaviors through self-awareness and monitoring is crucial. **Therapeutic Interventions**: Evidence-based therapeutic interventions tailored to individual needs are essential. Techniques such as self-compassion, acceptance, and restructuring unhelpful thoughts can significantly improve patients' quality of life. **Role of Journaling**: Writing down thoughts and feelings can help patients process their emotions and identify patterns in their behavior. This self-monitoring can be a powerful tool in managing chronic conditions. **Validation and Normalization**: Validating and normalizing patients' feelings of guilt, shame, and other emotions associated with chronic illness can alleviate distress and promote mental well-being. **Empathy and Compassion**: Building a compassionate and non-judgmental therapeutic relationship is key to effective psychological support. This approach helps patients feel understood and supported. **Challenges in Healthcare**: The conversation highlights the gaps in healthcare services for conditions like endometriosis, including the lack of mainstream services and the need for specialized care pathways. **Self-Compassion and Emotional Well-being**: Encouraging patients to practice self-compassion can help them manage the emotional impact of their condition and improve their overall well-being. These key messages emphasise the need for a comprehensive and empathetic approach to managing chronic conditions, incorporating both medical and psychological support to enhance patients' quality of life.

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• Pelvic Health Matters: Managing Endometriosis and Adenomyosis with Jo Chapple

  In this episode, Kathleen interviews Jo Chapple, a chartered physiotherapist specialising in female pelvic health. They discuss the importance of pelvic floor physiotherapy for individuals with endometriosis and adenomyosis. They cover topics such as the common dysfunctions associated with these conditions, the role of pelvic floor physiotherapy in managing pain and other symptoms, the importance of individualised treatment plans, and the need for a multidisciplinary approach to care. They also touch on the challenges of finding knowledgeable healthcare professionals and the importance of raising awareness about these conditions. Takeaways Pelvic floor physiotherapy is an important treatment option for individuals with endometriosis and adenomyosis. Common dysfunctions associated with these conditions include pelvic pain, muscle tension, and trigger points. Pelvic floor physiotherapy can help manage pain and other symptoms by addressing muscle imbalances and improving pelvic floor function. Treatment plans should be individualized and may include a combination of techniques such as manual therapy, exercises, and relaxation techniques. A multidisciplinary approach to care, involving collaboration between healthcare professionals, is important for the comprehensive management of these conditions. Finding knowledgeable healthcare professionals who understand the complexities of endometriosis and adenomyosis can be challenging, but it is crucial for effective treatment. Raising awareness about these conditions is important to ensure timely diagnosis and appropriate care. Jo has been working as a Chartered Physiotherapist for over 20 years now. In her career so far, Jo has worked across public and private sectors in the UK and Ireland, as well as establishing and developing her own private practice in Ireland, Pilates Physiotherapy Cork. One of Jo’s clinical specialist areas of interest is female pelvic health, but she is also passionate about public health promotion and the accessibility of quality information for all. In recent years, Jo has become involved in professional training courses and public information seminars both in Ireland and overseas; all with an emphasis on raising awareness on the importance of pelvic health. @pilatesphysiocork @jochapplephysio The information provided in this podcast is for educational and informational purposes only and is not intended as a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have heard on this podcast. Audio updated 04.07.2024

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• Jen Moore. They Said What?! Exposing Medical Gaslighting & Taking Charge of Endo/Adeno

  Summary Jen Moore, aka Jen.dometriosis on social media, is an endometriosis and adenomyosis educator, speaker and campaigner. Following her 22 year long battle for a diagnosis, she now helps others suffering with these conditions, as well as working to create change on an institutional level.She has worked with the BBC, NHS, University of Cambridge, and global pharmaceutical companies; as well as contributing to research, books and consulting for national charities. Jen is a UN Women UK delegate for the 68th Commission on the Status of Women, where she is determined to include endometriosis and adenomyosis in these vital and high level discussions.Jen is also the founder of two Endometriosis based research projects. The first, Endo Education, is looking at the current state of medical teaching in the UK when it comes to endometriosis. The second, the They Said What?! project is a deeply personal piece of work, collating the lived experiences of medical misogyny faced by those suffering with the disease. In this episode, Kathleen chats with Jen, about her journey with endometriosis and adenomyosis. They discuss the importance of accurate information and definitions, the impact of misinformation and lack of education, the role of healthcare professionals in education, the hope for change and future generations, and the importance of sharing personal stories and accurate information on social media. Jen shares her experience of upskilling and educating herself on endometriosis and adenomyosis and provides advice for others who want to do the same. This conversation covers topics such as misinformation and media influence, the power of social media, the "They Said What" project, the impact of medical gaslighting, raising awareness for adenomyosis, and the emotional journey of a hysterectomy. It also discusses the complexities of post-surgery pain. Takeaways Be cautious of misinformation and sensationalised headlines in the media and on social media. Stay curious, ask questions, and think critically about the information you come across. The They Said What project aims to document and amplify experiences of medical gaslighting and dismissal in women's healthcare. It highlights the need for change and exposes the widespread issue of medical mistreatment. Adenomyosis is a condition that is often overlooked and misunderstood. More awareness and research are needed to address the impact of adenomyosis on individuals' lives. The emotional journey of a hysterectomy can be complex, and individuals may experience conflicting emotions. It is important to provide psychological support and acknowledge the significance of the choice to undergo a hysterectomy. Post-surgery pain can persist even after a hysterectomy and excision, and additional work may be required to address other pelvic pain generators. It is essential to have realistic expectations and explore all available tools for pain management. Jen's Website https://www.jenmoore.co.uk/ Jen on Instagram https://www.instagram.com/jen.dometriosis/ They Said What Submissions https://www.jenmoore.co.uk/projects/theysaidwhatproject They Said What?! Instagram https://www.instagram.com/theysaidwhatproject/

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