112: Why Representation Matters within the Endo Community, with Julia Mandeville of Barbados

Today we are so excited to speak with Julia Mandeville. Julia is the co-founder of the Barbados Association of Endometriosis & P.C.O.S. She is currently a doctoral student and as part of her role as a graduate researcher, she is the project coordinator of several research studies investigating barriers to diagnosis for Black people with…

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111: The Grief of Chronic Illness

We talk about the grief that can accompany having a chronic illness. When endometriosis causes us ongoing losses in multiple aspects of our life, over and over again, it’s absolutely heartbreaking. We talk about some reasons why we might grieve due to chronic illness, what we personally grieve, and how our grief has impacted our…

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110: Interview: Endo Standard of Care with Arti Shah of Kenya

We speak with Arti Shah (she/her), a content creator and a dedicated endometriosis advocate actively engaged in the endometriosis space in Kenya and beyond. Her conviction and commitment is to positively impact the narrative of living with endometriosis through self-advocacy, play therapy and personal engagement. Arti advocates so that the next generation doesn’t have to…

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109: Surgeon Interview: Adhesions with Excision Surgeon Dr. Dulemba

We interview Dr Dulemba, an excision surgeon who has been in private practice in Denton, Texas, since 1986. He’s performed over 7300 endometriosis surgeries, so he has a lot of insight on endometriosis. Dr. Delumba offers a second look surgery for adhesions just a few days after his original excision surgery. He brings his knowledge…

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Ep108: Advocacy Mistakes We’ve Made and Tips for Endo Advocacy

We’ve had this podcast for over 4 years! Recently, I listened to our episodes 1-50 to update them where necessary, and I saw how much our advocacy has changed and how much we’ve grown over these years. Today we talk about some of our mistakes and what we wish we’d known when we began advocating….

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Ep107: Interview: How to Find an Excision Surgeon with Kate Boyce, BCPA

We speak with Kate Boyce (she/her), who is the co-founder of the Instagram and webpage EndoGirlsBlog, which provides accurate information to people with endometriosis. Kate is a board certified patient advocate and endometriosis patient herself. Excision surgery is operator dependent, meaning that it depends on the surgeon’s skills. There are very few excision surgeons in…

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Ep106: Surgeon Interview: Robotic Surgery for Endo with Excision Surgeon Dr. Dulemba

We interview Dr Dulemba, an excision surgeon who has been in private practice in Denton, Texas, since 1986. He’s performed over 5000 standard laparoscopic endometriosis cases and over 2300 robotic endometriosis cases! He’s been performing robotic surgery since 2007, and now all his surgeries are done via robotics.  Dr. Dulemba has published papers addressing pelvic…

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Ep105: Ableism. Part 2

Ableism is prevalent in society, and it’s systemic, just as racism and other forms of oppression and discrimination are. We discuss what ableism is, and give a brief recap of the medical vs the social model of disability before diving into some ableist comments we’ve heard as people with chronic illnesses and dynamic disabilities. We…

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Ep104: Ableism. Part 1

Ableism is prevalent in society, and it’s systemic, just as racism and other forms of oppression and discrimination are. We discuss what ableism is, and give a brief recap of the medical vs the social model of disability before diving into some ableist comments we’ve heard as people with chronic illnesses and dynamic disabilities. Note:…

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Ep103: Interview: Change the Guidelines with Invisible Iconic of Australia

We speak with Alexandra (Alex) Mitchell (she/her) from Australia about the standard of endometriosis care, discussing the Australian movement to Change the Guidelines as well as problems with multiple guidelines worldwide. Alex is an outspoken advocate in our endometriosis community. Across multiple social media platforms and organizations, she pushes for systemic changes to endometriosis care…

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