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/

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.

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.

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

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

Audio updated 04.07.2024

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/

Summary

In this conversation, Kathleen chats to Shawna Scott, the founder of Sex Siopa and BodyGrá, about the importance of pleasure and sexual health in those living with endometriosis, adenomyosis and pelvic pain. They discuss the significance of body-safe toys and materials, the different types of lubricants, and the importance of hygiene practices for sex toys. They also explore the need for honest and non-judgmental advice in the sexual health industry. Additionally, they highlight the importance of expanding support for pelvic health, including cancer survivors and individuals with pelvic pain conditions. The conversation concludes with a discussion on innovative products for pelvic health, such as Vagiwell and Calexotics vaginal dilators, the Ohnut and the Layer. Shawna discusses the importance of taking control of one's sexual health and rebuilding trust in oneself. She emphasises the role of pelvic physios and sexual therapists in providing support and recommends using products like vibrators to enhance sexual experiences. Shawna highlights the need for personalised recommendations based on individual preferences and sensitivities. She also explores the benefits of using materials like glass and stainless steel for temperature play and trigger point relief. The conversation delves into the use of dilators for pelvic pain and the challenges faced during menopause and perimenopause. Shawna emphasises the power of open conversations and the impact of social media on sexual education.

Takeaways

Pleasure and sexual health are important aspects of life with a chronic condition such as endometriosis and adenomyosis.

Using body-safe toys and materials is crucial to avoid potential health risks.

Choosing the right lubricant is essential for comfort and avoiding irritation.

Expanding support for pelvic health, including cancer survivors and individuals with pelvic pain conditions, is necessary. Taking control of one's sexual health is empowering and can help rebuild trust in oneself.

Pelvic physios and sexual therapists can provide valuable support and guidance in managing pelvic pain and enhancing sexual experiences.

Choosing the right vibrator depends on individual preferences, sensitivities, and desired stimulation.

Dilators can be helpful in managing pelvic pain, and their use should be personalised and gradual.

Navigating menopause and perimenopause involves embracing the changes in one's body and exploring new possibilities for pleasure.

Open conversations about sexual health and pleasure are essential for breaking down taboos and creating a supportive community.

Social media platforms often present challenges for sex educators and businesses, but alternative strategies can be employed to reach and support individuals.

Shawna's Websites

www.sexsiopa.ie

www.bodygra.ie

Links to products discussed

Lube

https://bodygra.ie/products/sutil-luxe-vegan-water-based-lubricant

Dilators

https://bodygra.ie/products/calexotics-inspire-silicone-dilator-kit

The Layer

https://bodygra.ie/products/the-layer-absorbent-intimacy-blanket

The Ohnut

https://bodygra.ie/products/ohnut

Chapters

00:00 Introduction and Background

02:04 Importance of Pleasure in Endometriosis Care

03:12 Body-Safe Toys and Materials

06:15 Types of Lubricants and their Importance

09:38 Hygiene Practices for Sex Toys and Shelf Life of Lube

11:14 Choosing the Right Lube and Avoiding Irritation

13:07 The Importance of Honest and Non-Judgmental Advice

14:38 Expanding Support for Pelvic Health

20:14 Support for Pelvic Pain Conditions

24:16 Innovative Products for Pelvic Health

30:59 Taking Control of Sexual Health

36:21 Choosing the Right Vibrator

42:36 Using Dilators for Pelvic Pain

46:12 Navigating Menopause and Perimenopause

50:12 The Power of Open Conversations

52:13 Challenges of Social Media

59:23 Accessibility and Inclusivity

Shannon Cohn, the filmmaker behind the documentaries 'Endo What?' and 'Below the Belt,' discusses her personal journey with endometriosis and her mission to raise awareness and create change. The reaction to the documentaries has been overwhelmingly positive, with many viewers feeling validated and grateful for the awareness they bring. Shannon emphasises the importance of storytelling and the challenges of balancing sensitive subjects in her films. She also addresses the misconceptions around endometriosis and offers advice for aspiring filmmakers. The goal of 'Below the Belt' is to bring the discussion of endometriosis into the mainstream and inspire practical solutions to the challenges faced by those with the condition.

The documentaries 'Endo What' and 'Below the Belt' have had an overwhelmingly positive reaction, with viewers feeling validated and grateful for the awareness they bring.

Balancing sensitive subjects in documentaries can be challenging, but it is important to tell authentic stories that resonate with a wide audience.

One of the biggest misconceptions about endometriosis is that it is a niche or rare condition when in reality it has a significant impact on individuals, their loved ones, and society as a whole.

Aspiring filmmakers should trust their instincts and tell authentic stories, while also finding a good editor who can provide honest feedback.

The goal of 'Below the Belt' is to bring the discussion of endometriosis into the mainstream and inspire practical solutions to the challenges faced by those with the condition.

The Endo What? movement website is www.endowhat.com

Below The Belt website is www.belowthebelt.film

Endometriosis in Ireland: There is a lack of data on endometriosis in Ireland, including prevalence, diagnosis rates, and treatment. People with endometriosis often experience long wait times for diagnosis and treatment and may need to go private to see a specialist.

Public Health and Endometriosis: Public health approaches endometriosis through prevention, promotion, education, and ensuring access to appropriate healthcare.

Orla O'Connor's Story: Orla, an advocate for endometriosis awareness, shares her experience of being diagnosed with endometriosis and the challenges she faced in the Irish healthcare system. She is now studying public health with the goal of using her knowledge to improve the lives of people with endometriosis in Ireland.

Challenges in the Irish Healthcare System: The Irish healthcare system is a multi-tier system with public and private options. This can lead to inequities in access to care, as those with private insurance may be able to access specialists and treatment more quickly.

Patients' Rights: Patients in Ireland have the right to access their medical records. Orla discusses the challenges patients may face in obtaining their records and offers tips for requesting them. She also discusses access to the HSE Cross Border Directive.

In this DEARG Podcast episode, we highlight the need for improved awareness, diagnosis, and treatment of endometriosis in Ireland and emphasise the potential role of public health in addressing this issue.

Orla O'Connor discusses her decision to go back to college and study public health. She explains the role of public health in preventing disease, prolonging life, and promoting health through the organised efforts of society. Orla highlights the need to treat endometriosis as a public health issue and address the barriers to care in the Irish healthcare system. She also discusses the challenges with accessing medical records and the importance of advocating for oneself. Orla shares her experience with the cross-border directive and the Bucharest Endometriosis Centre, emphasising the need for improved access to specialised care for endometriosis patients. This conversation covers various topics related to healthcare resources, access to healthcare, and support for women with endometriosis. The concerns about the cross-border directive and the potential impact on local populations are also explored. The conversation delves into the barriers women face in accessing healthcare and the importance of empowerment and advocacy. The need for improvements in the healthcare system, including separating public and private healthcare, is emphasised.

Takeaways

Public health plays a crucial role in preventing disease, prolonging life, and promoting health through the organized efforts of society.

Endometriosis should be treated as a public health issue, with a focus on raising awareness, educating the public, and improving access to care.

The Irish healthcare system faces barriers to care, including a multi-tier system and limited access to medical records.

The cross-border directive provides an opportunity for patients to access specialised care abroad, but there are challenges with referrals and reimbursements.

The Bucharest Endometriosis Centre is an example of a healthcare provider that is breaking down barriers to care and providing specialized treatment for endometriosis patients. Brexit has resulted in the loss of healthcare resources in the UK, impacting accessibility for patients.

Different healthcare systems have varying levels of accessibility and may pose challenges in accessing care.

Empowering women in healthcare settings and advocating for their rights is crucial in improving their healthcare experiences.

Complaints and advocacy play a significant role in holding healthcare providers accountable and driving change.

Support and information are essential for patients, including knowledge of their rights and available resources.

"DEARG - Putting Kathleen King in the Hot Seat" with Johanna Huber:

Kathleen’s Personal Journey:

Diagnosed with endometriosis after a nine-year delay, facing dismissal from doctors and misinformation.

Frustrated by the lack of awareness and support, Kathleen became a dedicated advocate.

Current Advocacy Work:

Challenges and Importance:

Endometriosis advocacy faces funding difficulties, burnout risks, and the emotional toll of supporting patients.

Despite challenges, Kathleen emphasises the importance of accurate information and individualisation of care.

She advocates against misinformation and low-quality research, highlighting the need for critical evaluation.

Key Qualities for Advocacy:

Open-mindedness, active listening, and critical thinking skills

Passion and commitment to empowering others

Additional Points:

Kathleen underlines the crucial role of:

Accurate information for endometriosis patients

Standardised care and specialist access

Open communication, education, and support for women's health

Recognising and addressing abnormalities in menstrual health

Overall:

Kathleen King's personal experience and dedicated advocacy work highlight the challenges and importance of improving endometriosis awareness, diagnosis, and treatment. Her efforts contribute to empowering individuals, building stronger communities, and driving positive change.

"DEARG - Putting Kathleen King in the Hot Seat" with Johanna Huber:

Kathleen’s Personal Journey:

Diagnosed with endometriosis after a nine-year delay, facing dismissal from doctors and misinformation.

Frustrated by the lack of awareness and support, Kathleen became a dedicated advocate.

Current Advocacy Work:

Challenges and Importance:

Endometriosis advocacy faces funding difficulties, burnout risks, and the emotional toll of supporting patients.

Despite challenges, Kathleen emphasises the importance of accurate information and individualisation of care.

She advocates against misinformation and low-quality research, highlighting the need for critical evaluation.

Key Qualities for Advocacy:

Open-mindedness, active listening, and critical thinking skills

Passion and commitment to empowering others

Additional Points:

Kathleen underlines the crucial role of:

Accurate information for endometriosis patients

Standardised care and specialist access

Open communication, education, and support for women's health

Recognising and addressing abnormalities in menstrual health

Overall:

Kathleen King's personal experience and dedicated advocacy work highlight the challenges and importance of improving endometriosis awareness, diagnosis, and treatment. Her efforts contribute to empowering individuals, building stronger communities, and driving positive change.