Amy speaks with Bev about:

-ableism and healthism: what they are, and how they affect people with chronic illness and/or disability

-the social vs the medical model of disability

-equity vs equality and the social determinants of health

Who is Bev Herscovitch?

Bev Herscovitch is a writer, communications professional and healthcare and disability activist/advocate living in Toronto, Ontario. She is passionate about sharing insights into how our society perceives and addresses the body, and about working with others to dismantle barriers to create an environment that empowers people to thrive as much as possible.

Clickable links at www.insixteenyears.com/episode138

--Working definition of ableism on TL Lewis’s website

CONNECT WITH BEV: Instagram @unwellunlimitedly

CONNECT WITH US! INSTAGRAM: @in16yearsofendoWEBSITE AND RESOURCES: insixteenyears.comLIKE OUR SHOW? Please rate it or leave a review!SUPPORT US by buying us a coffee: https://ko-fi.com/insixteenyears

Today Amy continues her conversation with Sophie about we want you to know if you are diagnosed with endo.

In part 1, we talked about the importance of educating ourselves on endo and the treatment options available. In this episode, we talk about:

-how the best improvements to quality of life often come from a full body approach

-the importance of finding mental health support

-how endometriosis isn’t your fault

Who is Sophie Kinloch?

Sophie Kinloch (she/her) is an endometriosis advocate, teacher and creative based in Northern Ireland. She experienced first hand the huge lack of resources and accurate information for patients with endometriosis living in Northern Ireland, and this was the catalyst for her advocacy work starting in 2018.

She was privileged to attend Endo Dubai Congress in 2019, taking part in live workshops and attending talks from world experts. She had her menstrual illustration work published in Freedom For Girls’ book ‘A Letter to My Younger Self’ in 2021 and has spoken on BBC radio live discussing endometriosis and gaps in care, as well as contributing to online articles and blogs about endo. She believes that chronic illness patients can - and deserve - to live a joyful life in which they are valued and supported. 

CONNECT WITH SOPHIE:
Instagram: @endoawareni

CONNECT WITH US! INSTAGRAM: @in16yearsofendoWEBSITE AND RESOURCES: insixteenyears.comLIKE OUR SHOW? Please rate it or leave a review!SUPPORT US by buying us a coffee: https://ko-fi.com/insixteenyears

Today Amy speaks with Sophie about we want you to know if you are diagnosed with endo. We talk about:

-the importance of educating yourself about this disease

-how it’s vital to inform yourself of the treatment options available so that you can have more informed consent when you make treatment decisions

-how connecting with the endo community can help you feel less isolated

Who is Sophie Kinloch?

Sophie Kinloch (she/her) is an endometriosis advocate, teacher and creative based in Northern Ireland. She experienced first hand the huge lack of resources and accurate information for patients with endometriosis living in Northern Ireland, and this was the catalyst for her advocacy work starting in 2018.

She was privileged to attend Endo Dubai Congress in 2019, taking part in live workshops and attending talks from world experts. She had her menstrual illustration work published in Freedom For Girls’ book ‘A Letter to My Younger Self’ in 2021 and has spoken on BBC radio live discussing endometriosis and gaps in care, as well as contributing to online articles and blogs about endo. She believes that chronic illness patients can - and deserve - to live a joyful life in which they are valued and supported. 

CONNECT WITH SOPHIE:
Instagram: @endoawareni

TRUSTWORTHY ENDO RESOURCES: https://insixteenyears.com/endometriosis-education/

CONNECT WITH US! INSTAGRAM: @in16yearsofendoWEBSITE AND RESOURCES: insixteenyears.comLIKE OUR SHOW? Please rate it or leave a review!SUPPORT US by buying us a coffee: https://ko-fi.com/insixteenyears

Amy speaks with Lyssette Horne about:

-their perspective on the myriad of obstacles endometriosis patients face in receiving adequate care

-their personal experience with endometriosis

Who is Lyssette Horne?

Lyssette Horne (she/they) is a black, queer, and chronically ill artist, activist, and documentary filmmaker.

Lyssette is a fierce advocate for mental health and suicide prevention, harm reduction, and body positivity. She has spoken on panels on the way trauma manifests in BIPOC LGBTQ homeless youth and led workshops for the DOE to help identify and support homeless youth in schools. Inspired by the works of Audre Lorde, Lyssette created Black Queer Roar, an online diary documenting their experiences as a chronically ill cancer and trauma survivor.

Their activism has led to many creative endeavors. Lyssette co-produced the Emmy-nominated documentary ‘Invisible: Diary of New York’s Homeless Youth’, which featured their own story. They were named one of the Advocate magazine’s ‘Top Forty Under 40’, and their story was featured in Gay City News, Daily News and CNN.Lyssette roars to break the silence, fight stigma, and give their community permission to show up authentically.

CONNECT WITH LYSSETTE:
Instagram: @BlackQueerRoar

CONNECT WITH US! INSTAGRAM: @in16yearsofendoWEBSITE AND RESOURCES: insixteenyears.comLIKE OUR SHOW? Please rate it or leave a review!SUPPORT US by buying us a coffee: https://ko-fi.com/insixteenyears

Amy and Brittany talk about how low self-worth has impacted their experience with endometriosis. We talk about:

-the untrue stories we told ourselves about our appearance and productivity and the negative effect that had on our lives

-how society taught us those stories through ableism, ageism, fatphobia, and other systems of oppression

-how much our lives have improved now that we understand our inherent worth

Amy’s book is available as a paperbook, e-book, and audiobook. See where to find it here: https://insixteenyears.com/where-to-find-my-book/

CONNECT WITH US! INSTAGRAM: @in16yearsofendo

WEBSITE AND RESOURCES: insixteenyears.com

LIKE OUR SHOW? Please rate it or leave a review!

SUPPORT US by buying us a coffee: https://ko-fi.com/insixteenyears

Today Amy speaks with Dr Maurice Chung about:

-the study he co-authored called “A Pain Desensitization Algorithm for Phenotyping and Treating Chronic Pelvic Pain”

-the details of this algorithm for trying to establish a patient’s pain generators to reduce pain

-nerve blocks for pelvic pain and the role of the bladder in pelvic pain.

Who is Dr Maurice Chung?

Dr. Chung received his medical training from Tufts University School of Medicine, Boston, and post- graduate OB/GYN residency training at Albany Medical Center, N.Y. He is Board Certified in General OB/GYN and Sub Specialty Board certified in FPMRS and received the Advanced Laparoendoscopic Surgeon certification from the Accreditation Council of Gynecologic Endoscopy (A.C.G.E.). He is the Director of the Center for Endometriosis, Pelvic Pain & Urogynecology of WVU Medicine Wheeling & Reynolds Memorial Hospital, He is the former Director of the Mercy Center of Endometriosis, Pelvic Pain & Urogynecology, Cleveland Clinic Mercy Hospital, Canton Ohio and also the former Director of Center of endometriosis, Pelvic Pain and Bladder Control, Lima, Ohio.

His focused interests and research in the last 30 years have been in advanced Laparoendoscopic surgery, minimally invasive surgery, Urogynecology, treatment of chronic pelvic pain, Pelvic Floor Dysfunction, pudendal nerve dysfunction, Endometriosis and Interstitial cystitis. He performed and taught the first urinary continence TVT procedure in China, 2000.

Clickable links at insixteenyears.com/episode133

A Pain Desensitization Algorithm for Phenotyping and Treating Chronic Pelvic Pain

CONNECT WITH US! INSTAGRAM: @in16yearsofendo

WEBSITE AND RESOURCES: insixteenyears.com

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SUPPORT US by buying us a coffee: https://ko-fi.com/insixteenyears

Amy speaks with Lyssette Horne about:

-their experience with ovarian torsion, skin, and breast cancer.

-some of the tools and practices Lyssette used to cope during these difficult times.

-the ways endometriosis and cancer has changed their body, and how they are learning to find acceptance with them.

In Part 2, Lyssette shares about their experience with endometriosis and the obstacles in finding care.

Lyssette Horne (she/they) is a black, queer, and chronically ill artist, activist, and documentary filmmaker.

Lyssette is a fierce advocate for mental health and suicide prevention, harm reduction, and body positivity. She has spoken on panels on the way trauma manifests in BIPOC LGBTQ homeless youth and led workshops for the DOE to help identify and support homeless youth in schools. Inspired by the works of Audre Lorde, Lyssette created Black Queer Roar, an online diary documenting their experiences as a chronically ill cancer and trauma survivor.

Their activism has led to many creative endeavors. Lyssette co-produced the Emmy-nominated documentary ‘Invisible: Diary of New York’s Homeless Youth’, which featured their own story. They were named one of the Advocate magazine’s ‘Top Forty Under 40’, and their story was featured in Gay City News, Daily News and CNN.

Lyssette roars to break the silence, fight stigma, and give their community permission to show up authentically.

CONNECT WITH LYSSETTE:Instagram: @BlackQueerRoar

CONNECT WITH US! INSTAGRAM: @in16yearsofendo

WEBSITE AND RESOURCES: insixteenyears.com

LIKE OUR SHOW? Please rate it or leave a review!

SUPPORT US by buying us a coffee: https://ko-fi.com/insixteenyears

Listen to 2 chapters from Amy’s audiobook. In this episode:

-Amy briefly shares what her book “Finding Peace with a Devastating Disease” is about.

-Amy shares about the challenges of producing her audiobook as a chronically ill and dynamically disabled person.

-Listen to chapter 2 “It’s Like Being Upset the Sky is Blue” and the prologue “Is Endometriosis a Devastating Disease?”

Amy’s book is available as a paperbook, e-book, and audiobook. See where to find it here: https://insixteenyears.com/where-to-find-my-book/

CONNECT WITH US! INSTAGRAM: @in16yearsofendo

WEBSITE AND RESOURCES: insixteenyears.com

LIKE OUR SHOW? Please rate it or leave a review!

SUPPORT US by buying us a coffee: https://ko-fi.com/insixteenyears

Amy speaks with Dr Wendaline VanBuren about:

—the 2024 publication called The Society of Radiologists in Ultrasound Consensus on Routine Pelvic Ultrasound for Endometriosis that Dr. VanBuren was a senior author on.

—the goal of the consensus, who participated, and the vision for implementation in the future.

— the difference between a Routine Pelvic ultrasound, Augmented Pelvic ultrasound, and Advanced endometriosis imaging.

Who is Dr. Wendaline VanBuren?

Dr. VanBuren is a board-certified radiologist, Associate Professor and Chair of the Gynecological imaging section at the Mayo Clinic in Rochester, MN, USA, with a dedicated interest in Endometriosis. Dr. VanBuren is the senior author on the Society of Radiologists in Ultrasound Consensus on Routine Pelvic US for Endometriosis, the Course Director for the 1st International Endometriosis Imaging Congress and one of the founding Course Directors for the Mayo Clinic Gynecological and Breast Imaging course.

On a national level, she co-founded the Disease Focused Panel on Endometriosis for the Society of Abdominal Radiology and was the invited guest editor for the journal Abdominal Radiology Special Edition on Endometriosis. Her ongoing work has been highlighted at a variety of national and international radiology, gynecology and pelvic pain conferences.

Clickable links at insixteenyears.com/episode130

Read the consensus here.

Instagram and X: @wendalinevb and @endoeice

CONNECT WITH US! INSTAGRAM: @in16yearsofendo

WEBSITE AND RESOURCES: insixteenyears.com

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Amy speaks with Yesenia Villalta about:

-the stories we tell commonly tell ourselves about our bodies and endometriosis-tips for processing the anger we often feel toward this disease-the importance of getting curious about the shame we feel and how to move toward self-acceptance and love.

Who is Yesenia Villalta?

Yesenia Villalta is a bilingual and bicultural social worker licensed in Virginia and Maryland, USA. She is the founder and owner of Venceremos®, LLC, a holistic healing practice primarily serving Black, Indigenous, and People of Color (BIPOC) to overcome trauma-related stress and has served as an expert witness in qualified immigration hearings. She is trained in various modalities that support the whole person and has her framework of supporting clients through the Seven Pillars of Self-Love™. Yesenia helps healers, leaders and entrepreneurs heal their mind, body, soul and boundaries. She believes in collective healing power as a path to liberation.

Clickable links at www.insixteenyears.com/episode128

Our Spanish episode here.

CONNECT WITH YESENIA:Instagram: @Christianbruja

CONNECT WITH US! INSTAGRAM: @in16yearsofendo

WEBSITE AND RESOURCES: insixteenyears.com

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SUPPORT US by buying us a coffee: https://ko-fi.com/insixteenyears