Unheard of – Details, episodes & analysis

In this episode, we are joined by Dr Mira Mousa, Dr Nilüfer Rahmioğlu and Ulrik Bak Kirk. With Mira, we explore studying endometriosis and reproductive health amongst Arab women in the Middle East. With Nilüfer we discuss the genetic risk factors for endometriosis, and learn more about the COHERE project; one which aims to understand endometriosis amongst women in Northern Cyprus. Finally, Ulrik tells us about the FEMaLe project; one that aims to use machine learning to better understand, diagnose and treat endometriosis. If you liked today’s episode, please like, share and subscribe! 

This podcast was generously brought to you by the Nuffield Department of Women’s and Reproductive Health, at the University of Oxford. 

We would like to thank Dr Mira Mousa, Dr Nilüfer Rahmioğlu and Ulrik Bak Kirk for sharing their insights into the genetic, epidemiological and machine learning approaches to understanding endometriosis in different populations. Finally, thank you to Margarida Sardo for sharing with us her science communication expertise throughout the podcast. 

Contact Details:  

Dr Nilüfer Rahmioglu: (twitter) @nilosh  

Ulrik Bak Kirk: (twitter): @FEMaLeEUProject 

Additional Resources:  

FEMaLe Project  
COHERE Project (Cyprus Women’s Health Research Initiative) 

While we routinely encourage the donation to charities which support people living with endometriosis, we ask that you consider ways to support Ukraine during this very difficult and frightening time. Defend Ukraine have put together a list of Ukrainian fundraisers, charities and donation links that you may wish to support. 

Summary 

In this episode, we are joined by Dr Vimee Bindra, consultant endometriosis excisional surgeon in Hyderabad, India and Dr Emma Evans, clinical psychologist at Oxford University Hospitals NHS Trust, UK. Together we explore how surgery, psychological interventions, and other more holistic and personalised options can help manage endometriosis associated symptoms. We also hear from Margarida Sardo about her experience with managing her endometriosis symptoms and what options worked for her along her endometriosis journey. 

If you liked today’s episode, please like, share and subscribe! 

This podcast was generously brought to you by the Nuffield Department of Women’s and Reproductive Health, at the University of Oxford. 

We would like to thank Dr Vimee Bindra and Dr Emma Evans for sharing their expertise in the field of surgical and psychological management of endometriosis symptoms. Finally, thank you to Margarida Sardo for sharing with us her journey to finding the treatment that works for her endometriosis symptoms, as well as her science communication expertise throughout the podcast. 

Contact Details:  

Dr Vimee Bindra: (email): vimee.bindra@gmail.com / (twitter): @VimeeBindra / (instagram): @endometriosissurgeon_india / (facebook): https://www.facebook.com/endometriosisspecialist / (linkedin): https://www.linkedin.com/in/dr-vimee-bindra-basu-7514765b/  

Dr Emma Evans: (twitter): @DrEmmaEvans 

Margarida Sardo: (email) margaridasardo@me.com / (twitter): @MargaridaSardo 

 
Additional Resources:  

Endometriosis UK: treatment  
 

Want to support the work of charities that provide mental health support and advice? Consider donating to Mind.  

In this episode, we are joined by Nikita Aashi Chadha, Writer & Lead Facilitator for Cysters, Dr Cara E. Jones, Assistant Professor of Women's & Gender Studies at California State University at Sacramento, and Beth McCowen, Deputy director of Endo Support United. Together we discuss how various aspects of our identity (i.e. race, gender, sexuality, age) may further contribute to the delay in receiving a diagnosis, and the quality of care one receives along their endometriosis journey. 

If you liked today’s episode, please like, share and subscribe! 

This podcast was generously brought to you by the Nuffield Department of Women’s and Reproductive Health, at the University of Oxford. 

We would like to thank Nikita Aaashi Chada, Cara E. Jones and Beth McCowen for sharing their experiences of endometriosis with us, but also for shedding light on the crucial importance of understanding endometriosis and communicating about it in an inclusive and intersectional manner. 

Contact Details:  

Nikita Aashi Chadha: (instagram): @nikkaayyy_c  
Dr Cara E. Jones: (twitter): @DrCaraEJones, (email): cara.jones@csus.edu
Beth McCowen: (twitter) @EndoSpprtUnited, (instagram): @bethmccoweb, @endo.support.united.lt 
 

Additional Resources:  

To get in touch with, or to work directly with Cysters please contact us via smile@cysters.org 

We are currently working on changing the narrative of the chronically ill space by publishing our own powerlist of 100 POC Chronic Illness Advocates. We are urging people to self-nominate in an attempt to dispel imposter syndrome: http://cysters.org/thepowerlist/ 

If you'd like to participate in research that is looking at intersectional experiences of Endometriosis, please visit the link via Jodie Hughes PhD @ Endometriosis South Coast: https://roehamptonuniversity.onlinesurveys.ac.uk/a-study-on-the-effects-of-location-ethnicity-and-care-app 

To read more about Endometriosis and Intersectionality, please refer to Nikita's Discover Society Article, or follow us on Instagram: @nikkaayyy_c @cystersgroup @neelamheeraspeaks 

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Cara E. Jones articles:
Queering gendered disabilities 

The Pain of Endo Existence: Toward a Feminist Disability Studies Reading of Endometriosis 

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Endo Support United Ltd resources

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If you're interested in donating to the work done my Endo Support United Ltd and Cysters, please consider getting in touch: Endo Support United Ltd, Cysters. 

In this episode, we are joined by Dr Arne Vanhie, Fertility Specialist at the Leuven University Hospital, and Dr Mathew Leonardi, Gynaecologic Surgeon and Sonologist at McMaster University & PhD candidate at the University of Sydney. Together we discuss what factors contribute to the diagnostic delay seen in endometriosis, which in the UK is currently on average 7.5 years, our focus on laparoscopy as the only definitive way to diagnose it, and what options there are for diagnosis, including: laparoscopy, imaging and future non-invasive options. We also hear from Margarida Sardo about what it meant to her to obtain her endometriosis diagnosis, and how her journey with the condition as developed since.

If you liked today's episode, please like, share and subscribe!

This podcast was generously brought to you by the Nuffield Department of Women's and Reproductive Health, at the University of Oxford.

We would like to thank Dr Arne Vanhie and Dr Mathew Leonardi for sharing their expertise in the field of endometriosis diagnosis and management. Finally, thank you Margarida Sardo for sharing with us her experience of receiving an endometriosis diagnosis, as well as her science communication expertise throughout the podcast.

Contact Details: 

Dr Arne Vanhie: (email) endometriose@uzleuven.be

Dr Mathew Leonardi: (twitter) @MathewLeonardi

Margarida Sardo: (email) margaridasardo@me.com / (twitter): @MargaridaSardo

Additional Resources:

Endometriosis UK: getting diagnosed

Interested in supporting a charity that support the specialist training of gynaecologists, and develops reproductive health-related policy? Please consider donating to the Royal College of Obstetrics and Gynaecologists.

In this episode, we are joined by Lydia Coxon, Post-Doctoral Researcher at the University of Oxford's Pain in Women group, and PhD Candidate Natasha Orr, of the University of British Columbia and UBC Endometriosis and Pelvic Pain Laboratory. In conversation, we learn more about what causes pain in endometriosis, how pain is studied, and some of the incredible work being done to the understand the highly stigmatised pains experienced by those with the condition. We are once again joined by Margarida Sardo, who shares with us her experience of living with endometriosis-associated pain, and gives invaluable insight into the variability and impact that this pain can have on the lives of people living with it.

If you liked today's episode, please like, share and subscribe!

This podcast was generously brought to you by the Nuffield Department of Women's and Reproductive Health, at the University of Oxford.

We would like to thank Lydia Coxon and Natasha Orr for sharing their expertise in the field of endometriosis-associated pain research. Finally, thank you to Margarida Sardo for sharing with us her experience of living with endometriosis-associated pain, as well as her science communication expertise throughout the podcast.

Contact Details:

Lydia Coxon: (twitter) @LydiaCoxon

Natasha Orr: (twitter) @NatashaLeighOrr

Margarida Sardo: (email) margaridasardo@me.com / (twitter) @MargaridaSardo

Additional Resources:

Learn more about sexual pain in endometriosis.

Want to support a charity which support people living with chronic pain across the United Kingdom? Please consider donating to Pain UK.

In this episode, we explore what endometriosis means to different people and what we currently know about what causes the disease. From the perspective of someone living with endometriosis, Margarida Sardo shared with us how endometriosis has shaped who she is, and why knowing what causes endometriosis would have been very important to her throughout her journey with endometriosis. We delve deeper into some of the main theories of what we currently think causes endometriosis with Dr Martin Hirsch, consultant gynaecologist and endometriosis specialist surgeon at Oxford University Hospitals, and Dr Nicola Tempest, and endometriosis researchers and academic clinical lecturer at the University of Liverpool. We also get insight into what endometriosis looks like inside the body from a surgeon's perspective, and how researching endometriosis can help us better understand the disease itself, its causes and help us to diagnose and treat it more effectively, in the future.

If you liked today's episode, please like, share and subscribe!

This podcast was generously brought to you by the Nuffield Department of Women's and Reproductive Health, at the University of Oxford.

We would like to thank Dr Nicola Tempest and Dr Martin Hirsch for sharing their research, clinical and surgical expertise in the field of endometriosis. Finally, thank you to Margarida Sardo for sharing with us what endometriosis means to her, as well as her science communication expertise throughout the podcast. 

Contact Details:

Dr Nicola Tempest: (Twitter) @Hapangama_lab

Dr Martin Hirsch: (Twitter) @martinhirsch (Instagram) @endometriosis.surgeon.uk

Margarida Sardo: (Twitter) @MargaridaSardo (Email) margaridasardo@me.com

Additional Resources:

Learn more about the theories discussed throughout the episode.

Want to support endometriosis research aiming to better understand the underlying cause? Please consider donating to Wellbeing of Women. 

In this teaser episode, we are joined by Margarida Sardo who shares with us her endometriosis journey, and reveals questions that she's had and continues to have about the condition.

If you liked today's episode, please like, share and subscribe!

This podcast was generously brought to you by the Nuffield Department of Women's and Reproductive Health, at the University of Oxford.

We would like to thank Margarida Sardo, a Science Communication Researcher at UWE Bristol, for sharing both her experience of living with endometriosis, as well as her science communication expertise throughout the podcast.

Contact Details:

Margarida Sardo: margaridasardo@me.com

Twitter: @MargaridaSardo

Support Resources: 

Local (UK) Endometriosis Support Groups

Mental Health Support

Want to support endometriosis research and those with endometriosis? Please consider donating to Endometriosis UK.