In Sixteen Years of Endometriosis

In Sixteen Years of Endometriosis

Laugh, cry, and shout with us as we talk all things endometriosis. We’re 2 witty best friends that pride ourselves on sharing accurate, well-researched information. We delve into all those embarrassing did-that-really-just-happen?! endo stories, talk vulnerably about our personal growth, and share disease facts with a side of humor. We also have some great interviews with excision surgeons and endo advocates too! We hope our podcast will support and empower you.

Episodes

November 3, 2022 48 min
Olivia Nwankudu (she/her) is an endometriosis advocate and Founder of EndoSurvivors International Foundation (ESIF); a non-profit organization focused on raising awareness about endometriosis, educating the public about endometriosis, and supporting endometriosis patients in Nigeria. ESIF is also committed to reducing period poverty and improving school retention through the free distribution of sanitary pads to school children....
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We continue our series on disability by talking about identifying as disabled with endometriosis, internalized ableism, invisible or non-apparent disability, the social vs the medical model of disability, and language around disability. 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/ins...
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Soha Wahb (she/her) is a Lebanese medical student at the American University of Beirut, and founder of “Endo In Arabic”, an initiative that aims to provide accurate information about Endometriosis in both English and Arabic, and to shed light on patients’ struggles and the factors hindering access to proper care. In this episode, Soha brings forth her perspectives of being both a patient and healthcare professional to talk about...
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We talk about some common examples of medical gaslighting that we may have heard from our doctors, and delve into the psychological toll it can take on us. 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
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There are various endometriosis guidelines worldwide which guide gynecologists in treating endometriosis and set the standard of care. Amy speaks 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. We talk about what the guidelines are, who they are ...
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We talk about the medical and the social model of disability, and our thoughts on how it applies to endometriosis and chronic illness in general. These 2 models, which we explained about in episode 93, are just 2 ways of many to look at disability. 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://k...
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Like all things in life, there are many perspectives and ways of looking at disability and the social, political, cultural, and economic factors that define it. Two of the main models are the social model and the medical model, which we have a general discussion about today. We will take a deeper dive into the 2 models and how we feel they relate to endometriosis in part 2. CONNECT WITH US! INSTAGRAM: @in16yearsofendo WEBSIT...
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In episode 91, we talked at length about how no hormonal medications actually treat the disease, in spite of this prevalent misinformation among the medical community. Excision is the gold standard treatment and the only one that can remove all endometriosis at the root. However, hormonal suppression may help us with our SYMPTOMS and allow some of us to have a better quality of life. In this episode, we talk about different type...
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Hormonal suppression - such as combined hormonal contraception, IUDs, progestins like Dienogest/Visanne, or GNRH analogs like Lupron, Orilissa, Zoladex , Synarel, Prostap, etc - MAY help SOME people with their endometriosis SYMPTOMS. However, no hormonal medications actually treat the disease, in spite of this prevalent misinformation among the medical community. We break down flawed methodology in 2 studies on Lupron and Zoladex, ...
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We welcome Dr. Amy Stein, a physical therapist at the forefront of treating pelvic floor dysfunction and pelvic pain. In addition to being the founder of Beyond Basics Physical Therapy in NYC, Dr. Stein has served as the President – and is currently on the advisory board – of the International Pelvic Pain Society. She is the co-author of Beating Endo: How to reclaim your life from Endometriosis and the author of Heal Pelvic Pain. T...
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May 12, 2022 68 min
We break down the definition of disability under the ADA or the Americans with Disabilities Act, as well as mention the WHO criteria. We also discuss dynamic as well as “invisible” or non-apparent disability. This is the first episode in a series we are doing on disability. CONNECT WITH US! INSTAGRAM: @in16yearsofendo WEBSITE AND RESOURCES: insixteenyears.com LIKE OUR SHOW? Please rate it or leave a review! SUPPORT US by bu...
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There are days when it feels like all we are doing is surviving. We talk about how we get through heavy feelings and how we try to stay open to possibility even on the most hopeless-feeling days. AMY'S BOOK: Finding Peace with a Devastating Disease by Amy Corfeli. CONNECT WITH US! INSTAGRAM: @in16yearsofendo WEBSITE AND RESOURCES: insixteenyears.com LIKE OUR SHOW? Please rate it or leave a review! SUPPORT US by buying u...
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Today we continue our chat on DBT (Dialectical Behavioral Therapy) with Maggie Bowyer (they/them), by talking about interpersonal skills - what we’ve learned and are each working on. Maggie is also the author of several poetry collections including When I Bleed: Poems about Endometriosis and Ungodly. INSTAGRAM: @maggie.writes TWITTER: maggiebow98 WEBSITE: www.maggiebowyer.com EMAIL: Bowyermag@gmail.com
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Today we welcome Maggie Bowyer (they/them) to the show for a beautiful chat on acceptance and DBT. DBT stands for Dialectical Behavioral Therapy, which is a type of Cognitive Behavioral Therapy that teaches additional skills such as acceptance, mindfulness, interpersonal skills, emotional regulation, and distress tolerance skills. We talk about these skills in relation to endometriosis and how they’ve helped us to live with more in...
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It’s been 3.5 years since Amy had excision. She talks about what excision helped with and what she is still working on, as well as the lessons she took away post-excision about endo and overall healing. She also shares the advice she would give to her younger self. AMY'S BOOK: Finding Peace with a Devastating Disease, by Amy Corfeli. CONNECT WITH US! INSTAGRAM: @in16yearsofendo WEBSITE AND RESOURCES: insixteenyears.com ...
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We finalize our excision series by speaking about how endometriosis rates of recurrence for excision vary throughout the literature, and some factors that can play a role into why there is such a difference in recurrence rates among studies. We also talk about fears we might have about endo recurrence, studies looking at quality of life increases post-excision, and access to excision. CONNECT WITH US! INSTAGRAM: @in16yearso...
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As we continue our excision series, we talk about the difference between persistence vs recurrence and dive deeper into facts around excision. We also discuss how not all excision surgeons have the same skill level or experience, and why this matters. 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...
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We speak with Dr. Vimee Bindra, who is a leading endometriosis excision surgeon in India with a high volume practice in endometriosis. She deals with ovarian endometriosis along with ureter, bowel, bladder, and other extra-pelvic locations too. Dr. Bindra is an endometriosis excision surgeon at Apollo Hospitals in Hyderabad, India. She is also the director of the "Centre for PCOS and Endometriosis" (COPE Clinics). Additiona...
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Excision surgery is the gold standard for endometriosis treatment. We explain the difference between ablation and excision surgery, as well as the advantages of excision. There are only about 200 excision surgeons in the US, and we discuss systemic problems within the medical system that contribute to this shortage. We briefly talk about robotic surgery as well as surgical lighting. For resources on finding an excision surgeon, see...
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Many of us follow some kind of special way of eating to help reduce our endometriosis pain, fatigue, or flares. This could be an anti-inflammatory diet, the Paleo diet, the AIP, gluten-free, sugar-free, dairy-free, or any other diet. It often involves cutting out specific foods, and it can feel restrictive, limiting, or sad that we no longer eat the foods we love and are accustomed to. As two people each following what’s typica...
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