Show cover of In Sixteen Years of Endometriosis

In Sixteen Years of Endometriosis

Laugh, cry, and shout with us as we talk all things endometriosis! We hope our podcast will support and empower you. Our podcast has 2 types of episodes: (1) Chats between Amy and Brittany, 2 best friends that pride ourselves on sharing accurate, well-researched information in a fun, digestible way. Hang out with us while we delve into embarrassing “did-that-really-just-happen?!” endo stories and talk vulnerably about our personal growth. Some of our favorite episodes are the later ones – we really love how our knowledge, and also we, have grown over time! (2) Amy leads amazing interviews with renowned excision surgeons, subject experts, and endo advocates worldwide! Remember, the info presented here is educational info only and NOT medical advice.

Tracks

120: Interview: Bias in Healthcare with Patient and Practitioner Kimether Redmon
Today I’m speaking with Kimether Redmon about: -Trauma-informed medical care. -Some biases a person may face in the medical setting. -Personal biases that Kimether has faced. Who is Kimether Redmon? She is an endometriosis patient as well as a Family Nurse Practitioner serving low-income uninsured patients in her area. Before her nursing career, she was a research consultant with a background in brain injury research, and employment. Being diagnosed with stage 4 endometriosis in 2021 after over 20 years of countless incidents of dismissal, gaslighting, bias, and incompetency has fueled her own diligence as a healthcare provider and educator that prioritizes high quality, trauma informed care to all. Kimether is also the vice president of Peach Corps, which is on a mission to help those with PCOS, Endo, Adeno and chronic conditions. Clickable links at insixteenyears.com/episode120 CONNECT WITH KIMETHER: Peach Corps IG: @peach_corps
 Kimether IG: @therebelliousuterus
 Kimether’s podcast IG: @endothickofit 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
44:23 2/13/24
119: Interview: Advocating for Ourselves with Patient and Practitioner Kimether Redmon
Today I’m speaking with Kimether Redmon about: -Tips to improve our medical appointments -How to maximize the short amount of time we have with the practitioner. -How to be more specific when describing our symptoms -Our personal experiences with uncomfortable medical settings. Who is Kimether Redmon? She is an endometriosis patient as well as a Family Nurse Practitioner serving low-income uninsured patients in her area. Before her nursing career, she was a research consultant with a background in brain injury research, and employment. Being diagnosed with stage 4 endometriosis in 2021 after over 20 years of countless incidents of dismissal, gaslighting, bias, and incompetency has fueled her own diligence as a healthcare provider and educator that prioritizes high quality, trauma informed care to all. Kimether is also the vice president of Peach Corps, which is on a mission to help those with PCOS, Endo, Adeno and chronic conditions. Clickable links at insixteenyears.com/episode119 CONNECT WITH KIMETHER: Peach Corps IG: @peach_corpsKimether IG: @therebelliousuterusKimether’s podcast IG: @endothickofit 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
66:33 1/26/24
118: Interview: Endo Standard of Care with Dr. Shilpa Rao of India
Today we speak with Dr. Shilpa Rao, who is a dentist by profession and an endo crusader by passion. Shilpa has a YouTube channel called The Endometriosis Crusader in which she interviews patients and professionals about various topics related to endometriosis and reproductive health. Shilpa shares about her personal experiences with cultural and social barriers to care, as well as her hopes for endometriosis care in the future in India. Clickable links at insixteenyears.com/episode118 CONNECT WITH SHILPA Instagram: @endostrongg YouTube: Endo Crusader https://www.youtube.com/@shilpaa1980 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
56:28 1/11/24
117: Disability Accommodations in the Workplace. Part 2
We continue to talk about work accommodations under the Americans with Disabilities Act. In part 2, we discuss medical documentation, examples of what are reasonable vs unreasonable accommodations, and telework. DISCLAIMER: We are not employment lawyers or disability civil rights attorneys. This is a general discussion of what we've been learning for our own individual work situations and is not legal advice. We encourage you to double check all information we give in this episode and/or consult a qualified professional for advice if you are in a situation where you want to ask for work accommodations. Clickable links at insixteenyears.com/episode117 --OTHER REASONABLE ACCOMMODATION ISSUES (Enforcement Guidance on Reasonable Accommodation and Undue Hardship under the ADA) --Telework as a Reasonable Accommodation --Employees' Practical Guide to Requesting and Negotiating Reasonable Accommodation Under the Americans with Disabilities Act --Job Accommodation Network’s Practical Guide to Accommodations 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
67:32 12/4/23
116: Disability Accommodations in the Workplace. Part 1
We are going to talk about work accommodations under the Americans with Disabilities Act. In part 1, we discuss what accommodations are vs accessibility in general, who qualifies for accommodations under the ADA, and some ideas on how and when to request accommodation. DISCLAIMER: We are not employment lawyers or disability civil rights attorneys. This is a general discussion of what we've been learning for our own individual work situations and is not legal advice. We encourage you to double check all information we give in this episode and/or consult a qualified professional for advice if you are in a situation where you want to ask for work accommodations. Clickable links at insixteenyears.com/episode116 --Employees' Practical Guide to Requesting and Negotiating Reasonable Accommodation Under the Americans with Disabilities Act --Job Accommodation Network’s Practical Guide to Accommodations --Your Employment Rights as an Individual with a Disability --Ashley Jacobson: Changing Disabled Employment with Accommodations --EEOC Enforcement Guidance on Reasonable Accommodation and Undue Hardship Under the Americans with Disabilities Act 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
59:59 11/9/23
115: Surgeon Interview: Dr. David Redwine, World-Renowned Excision Surgeon. Part 3
Until his retirement in 2012, Dr. David Redwine headed the world-renowned and award-winning Oregon Institute of Endometriosis at St. Charles Medical Center, Bend, Oregon, treating thousands of people with endometriosis via excision surgery from all across the US, Canada, and beyond. His research is on the website endopaedia.info and has been vital to the endometriosis community, helping empower and educate both patients and physicians alike. He has presented his theory of origin of endo, Mulleriosis, around the world. TODAY WE DISCUSS:—“Sins of the endometriosis literature.”—The recent research that came out with Horvath's pan-tissue clock and the origin of endometriosis.—Claims on the Lupron website is that it’s “used for the reduction of endometriotic lesions.”—Microscopic endometriosis.—The ESHRE updated endometriosis guidelines around diagnosis of endo. IN EPISODES 67 AND 68 (go back and check them out!), we did part 1 and part 2, in which we discussed:—endometriosis treatments—excision surgery—endometriosis recurrence—the embryonic origin of endo—why he considers Sampson’s theory of retrograde menstruation the most dangerous theory in the history of medicine—what endo does in the body—obstacles to endometriosis treatment 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
50:47 10/27/23
114: Interview: Endo Coaches, Naturopaths, Functional Medicine, and Wellness Culture with Kate Boyce
Many people regret having spent thousands of dollars on naturopathy, coaches, and functional medicine that didn’t help them, that they could have instead spent on excision surgery, a registered dietitian, pelvic floor therapy, SIBO treatment with a gastroenterologist, or other types of doctors/treatment. Today Amy speaks with Kate Boyce (she/her) on common red flags to look out for in wellness culture. Kate is a board certified patient advocate and endometriosis patient herself. She is the co-founder of the Instagram and webpage EndoGirlsBlog, which provides accurate information to people with endometriosis. Clickable links at insixteenyears.com/episode114 --Hormones/HRT - write up from my website --Wellness Culture - write up from my website --Naturopathy and Functional Medicine - write up from my website --The "Endo Diet" - write up from my website CONNECT WITH KATE: INSTAGRAM: @endogirlsblog WEBSITE: https://endogirlblog.com/ 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
80:42 10/12/23
113: Surgeon Interview: Endometriosis and Hormone Receptors with Dr. Dulemba
We interview Dr Dulemba, an excision surgeon who has been in private practice in Denton, Texas, since 1986. For the past 20 years, he’s been testing the hormone receptors of endometriosis lesions. Today we discuss his findings and thoughts on endometriosis and hormones. Dr. Dulemba also joined us in episode 106 on robotic excision surgery and 109 on adhesions, so if you missed those, please check them out! Also I’d like to thank Kate from EndoGirlsBlog for brainstorming these questions with me! —CONNECT WITH DR. DULEMBA: Dr Delumba works at the Women’s Centre in Denton, Texas https://www.womenscentre.net/ Resources below - Clickable links at insixteenyears.com/episode113 --Information on HRT –Marquardt RM, Kim TH, Shin JH, Jeong JW. Progesterone and Estrogen Signaling in the Endometrium: What Goes Wrong in Endometriosis? Int J Mol Sci. 2019;20(15):3822. Published 2019 Aug 5. doi:10.3390/ijms20153822 – There is also a chart of differences of endo and the endometrium here. –Bulun SE, Monsavais D, Pavone ME, et al. Role of estrogen receptor-β in endometriosis. Semin Reprod Med. 2012;30(1):39-45. doi:10.1055/s-0031-1299596 —Progesterone Resistance in Endometriosis – Article on Nancy’s Nook. –-Bulun SE, Cheng YH, Pavone ME, et al. 17Beta-hydroxysteroid dehydrogenase-2 deficiency and progesterone resistance in endometriosis. Semin Reprod Med. 2010;28(1):44-50. doi:10.1055/s-0029-1242992
46:59 9/26/23
112: Interview: 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 endometriosis and PCOS. She has focused much of her research and public health intervention efforts on investigating endometriosis in underserved populations, Black women in particular because the disease is not well studied in this population. In 2023, Julia was among the first group of recipients of the Mentoring for Anti-Racism and Inclusive Excellence (MARIE) program. With her MARIE grant, she seeks to further understand the specific barriers Black women with endometriosis encounter in terms of structural racism, systemic discrimination, and internalization of the Strong Black Woman schema. Julia speaks to us today about her research, how a lack of representation affects Black endometriosis patients, and her hopes for the future of endometriosis care in the Caribbean. CONNECT WITH JULIA INSTAGRAM @endoandpcosbb
61:23 9/7/23
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 lives. Clickable links at insixteenyears.com/episode111 --Grieving Chronic Illness and Injury — Infinite Losses 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
75:10 8/24/23
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 battle this debilitating condition as we have and can have a better quality of life from an early age. Arti is the host of A Ray of Sunshine, a podcast that has insights from endometriosis medical experts and advocates from all over the world, and debunks misinformation about endometriosis. In this episode, Arti shares about her personal experiences with cultural and social barriers to care, as well as exciting initiatives that are improving body literacy and access to excision. Clickable links at insixteenyears.com/episode110 --A Ray of Sunshine - Arti’s podcast "involves insights from endometriosis medical experts and advocates from all over the world, and debunks misinformation about endometriosis.” --The Palgrave Handbook of Critical Menstruation Studies --Connect with Arti on Instagram @artiphotography
47:56 8/11/23
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 to this episode to answer various questions related to adhesions! Dr. Dulemba also joined us in episode 106 to speak about robotic excision surgery, so if you missed that, please check it out! Clickable links at insixteenyears.com/episode109 CONNECT WITH DR. DULEMBA: Dr Delumba works at the Women’s Centre in Denton, Texashttps://www.womenscentre.net/ --Adhesions - article by Dr. Ken Sinervo, CEC
74:08 7/26/23
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. Clickable links at insixteenyears.com/episode108 --Ellis K, Munro D, Clarke J. Endometriosis Is Undervalued: A Call to Action. Front Glob Womens Health. 2022 May 10;3:902371. doi: 10.3389/fgwh.2022.902371. PMID: 35620300; PMCID: PMC9127440. 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
74:07 7/12/23
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 the world with the top level skill, and many regular OBGYNs with no extra surgical training, and then surgeons at different skill levels in between those. Kate breaks down for us what to look for in a surgeon, so that we can know what questions to ask and how to determine if our surgeon has the necessary skills to excise our endo. Note: There’s actually 2 types of endometriosis surgery: excision and ablation. Excision is the gold standard treatment for endo and our discussion is about finding an excision surgeon. SOURCES: Clickable links at insixteenyears.com/episode107 How to Find a Specialist - full outline and resources of what we spoke about today Analogy for the Hierarchy of Endometriosis Surgeons – IG post from EndoGirlsBlog to help understand the range of skills and experience different surgeons can have for endometriosis Treatment - learn about the differences between ablation and excision here CONNECT WITH KATE: INSTAGRAM: @endogirlsblog WEBSITE: https://endogirlblog.com/ 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
73:27 6/28/23
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 pain, laparoscopy, endometriosis, and robotic surgery. Today, he shares his insight on robotic surgery, including safety, advantages, and disadvantages. Note: Excision surgery can be via robotic surgery or a standard laparoscopy – both techniques can potentially give the patient a good outcome with low complication rates. The robot is just a tool. It doesn’t make or break your surgery, or mean that you will have any better or worse surgery because of it when in the hands of an expert. What’s most important is not if it’s robotic or standard laparoscopy, but rather the surgeon’s ability to recognize endometriosis in all its colors, appearances, and locations, and to safely excise it from all locations. Clickable links at insixteenyears.com/episode106 CONNECT WITH DR. DULEMBA:Dr Delumba works at the Women’s Centre in Denton, Texashttps://www.womenscentre.net/ --Robotic Surgery. From Dr John F. Dulemba.  RESOURCES:—Laparoscopy vs. Robotic Surgery for Endometriosis (LAROSE): a multicenter, randomized, controlled trial. Soto E, Luu TH, Liu X, Magrina JF, Wasson MN, Einarsson JI, Cohen SL, Falcone T. Fertil Steril. 2017 Apr;107(4):996-1002.e3. doi: 10.1016/j.fertnstert.2016.12.033. Epub 2017 Feb 24. PMID: 28238489. —Robotic surgery vs laparoscopic surgery in patients with diagnosis of endometriosis: a systematic review and meta-analysis. Restaino S, Mereu L, Finelli A, Spina MR, Marini G, Catena U, Turco LC, Moroni R, Milani M, Cela V, Scambia G, Fanfani F. J Robot Surg. 2020 Oct;14(5):687-694. doi: 10.1007/s11701-020-01061-y. Epub 2020 Mar 7. PMID: 32146573. —Robotic surgery in gynecology. Sinha R, Sanjay M, Rupa B, Kumari S. J Minim Access Surg. 2015 Jan-Mar;11(1):50-9. doi: 10.4103/0972-9941.147690. PMID: 25598600; PMCID: PMC4290120. —The current role of robotic surgery in endometriosis management. Andres MP, Souza C, Villaescusa M, Vieira M, Abrao MS.Expert Rev Endocrinol Metab. 2022 Jan;17(1):63-73. doi: 10.1080/17446651.2022.2031976. Epub 2022 Jan 24. PMID: 35073819. —Comparison of robot-assisted and conventional laparoscopy for colorectal surgery for endometriosis: A prospective cohort study. Ferrier C, Le Gac M, Kolanska K, Boudy AS, Dabi Y, Touboul C, Bendifallah S, Daraï E. Int J Med Robot. 2022 Jun;18(3):e2382. doi: 10.1002/rcs.2382. Epub 2022 Mar 1. PMID: 35178837. —Perioperative outcomes of robotic assisted laparoscopic surgery versus conventional laparoscopy surgery for advanced-stage endometriosis. Nezhat FR, Sirota I. JSLS. 2014. Oct-Dec;18(4):e2014.00094. doi: 10.4293/JSLS.2014.00094. PMID: 25489208; PMCID: PMC4254472. —Robot-Assisted Surgery for Endometriosis Current and Future Perspectives. Mikhail E, Pavlovic ZJ, Al Jumaily M, Kheil MH, Moawad GN, Soares T. Surg Technol Int. 2022 May 19;40:197-202. doi: 10.52198/22.STI.40.GY1562. PMID: 35415833.
76:32 6/14/23
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 also touch briefly on the ableism of wellness culture and the lack of disability accommodations throughout society. Note: we are only speaking for ourselves and not for the disability community at large. If our limited discussion of ableism interests you, we encourage you to follow disabled people online and on social media, because there are many disabled people bringing awareness and speaking out on these topics. It’s important to dismantle our own ableism by learning from people of various identities and perspectives. Clickable links at insixteenyears.com/episode105 --Working Definition of Ableism - January 2022 update - from Talila A. Lewis --What's another word for crazy? From Word Hippo 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
64:21 5/30/23
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: we are only speaking for ourselves and not for the disability community at large. If our limited discussion of ableism interests you, we encourage you to follow disabled people online and on social media, because there are many disabled people bringing awareness and speaking out on these topics. It’s important to dismantle our own ableism by learning from people of various identities and perspectives. Clickable links at insixteenyears.com/episode104 --Working Definition of Ableism - January 2022 update - from Talila A. Lewis 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
84:36 5/19/23
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 so that patients can access the gold standard treatment that they need. She also is the creator and host of the Invisible Iconic Podcast, which features discussions with guests on topics related to endometriosis. CONNECT WITH ALEX: INSTAGRAM: @invisibleiconic PODCAST (on Spotify and Youtube): The Invisible Iconic Podcast BOOK FEATURE: She contributed historical critiques of Australia and Romania’s standards of healthcare in ‘Good Girl, Bad Period: Breaking the Silence on Misogyny and Gaslighting Through the Lens of Endometriosis’ by Silvia Young
86:37 4/20/23
Ep102: Surgeon Interview: The Importance of Informed Consent with Dr. Jeff Arrington
Dr. Jeff Arrington is an outspoken endometriosis advocate, expert endometriosis excision surgeon, and advanced Minimally Invasive Gynecologic Surgery specialist. The evolution of his practice to focus on advanced excision of endometriosis really was driven by patient need. In practice he was able to continue advancing knowledge and surgical skill through focusing on endometriosis care, eventually building a full multi-disciplinary practice.  Now, after his last 4 years as a surgeon at the Center for Endometriosis Care in Atlanta, GA, he is opening a new world-class endometriosis clinic, EndoWest, in the greater Salt Lake Valley.  Dr. Arrington is well known in the endometriosis community as one who advocates for all patients both in and out of the OR, constantly working to improve care options for patients with a focus on true and truthful informed consent and a higher value to patient autonomy. We have a great conversation about what informed consent is, why it’s so vital, and what it would like look with endometriosis care. We also discuss changes we’d like to see in the ACOG endometriosis guidelines, and what we hope for the future of endometriosis treatment. CONNECT WITH DR. ARRINGTON: FACEBOOK - Jeff Arrington-Endosurgeon INSTAGRAM: @dr.jeff_endosurgeon WEBSITE FOR HIS ENDOMETRIOSIS MULTIDISCIPLINARY PRACTICE: www.endowest.net
74:51 2/26/23
Ep101: You Are Not Broken
With dealing with this disease and all the repercussions of it on our physical and mental health, many of us feel or have felt like we are broken. We explore the feelings of brokenness and talk about how although we might feel like we are broken - which are valid feelings and a normal response to living with chronic illness - we are not inherently broken as a human being. We are not unworthy, inadequate, unlovable, or undeserving in any way. CONNECT WITH US! INSTAGRAM: @in16yearsofendo WEBSITE AND RESOURCES: insixteenyears.com AMY’S BOOK: Finding Peace with a Devastating Disease by Amy Corfeli LIKE OUR SHOW? Please rate it or leave a review! SUPPORT US by buying us a coffee: https://ko-fi.com/insixte
79:40 2/10/23
Ep100: Surgeon Interview: Excision Surgery with Dr. Abhishek Mangeshikar
Dr. Abhishek Mangeshikar (he/him) is an expert excision surgeon who also advocates and spreads awareness of correct information of endometriosis. He’s performed almost 2000 surgeries, and has been running his multidisciplinary endometriosis practice for over 7 years. He is the founder and director of the Indian Centre for Endometriosis (ICE), which is a knowledge bank about endometriosis: correcting myths with endometriosis facts, discussing treatment options/procedures, and providing ample research data and key developments in the field of endometriosis in India and worldwide.This is a great interview in which he speaks about excision surgery for endometriosis and various endometriosis topics such as bowel endometriosis, adhesions, imaging, and endometriosis guidelines. SOURCES: Clickable links at insixteenyears.com/episode91 CONNECT WITH DR. MANGESHIKAR: TWITTER: @mangeshikar INSTAGRAM: @endometriosis_india WEBSITE: https://www.endometriosis-india.com/ YOUTUBE VIDEOS: --Extra Pelvic Not Rare and Indian Center for Endometriosis talk Extra Pelvic Endometriosis – “Dr. Abhishek Mangeshikar of Indian Center for Endometriosis and Dr. Wendy Bingham, PT, DPT of Extra Pelvic Not Rare discuss non reproductive system disease in the person with endometriosis. Chocked full of easy to understand statistics and pictures of extra pelvic disease this is a must see for anyone with bowel endometriosis, diaphragmatic endometriosis or extra pelvic disease.” --Understanding Bowel endometriosis : What patients need to know – Video by excision surgeon Dr Mangeshikar 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
76:36 1/28/23
Ep99: Interview: Endo Standard of Care with Olivia Nwankudu of Nigeria
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. Since inception, ESIF has educated over 9000 adolescents on menstrual hygiene and the symptoms of endometriosis, thereby encouraging discussions about periods and promoting a care-seeking behavior among those experiencing symptoms of the disease in a bid to reduce diagnostic delays. In this episode, we discussed the work that ESIF is doing in Nigeria, as well the standard of care she’s come across there. CONNECT WITH US! INSTAGRAM: @in16yearsofendo WEBSITE AND RESOURCES: insixteenyears.com LIKE OUR SHOW? Please rate it or leave a review! CONNECT WITH OLIVIA AND ESIF: --Instagram and Twitter: @endosurvivors--LinkedIn and Facebook: EndoSurvivors International Foundation--Donations: Reach out to their organization on social media to be sent the link to support their hard work.
48:06 11/4/22
Ep98: Identifying as Disabled
Updated 10/2023. 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/insixteenyears
60:28 10/20/22
Ep97: Interview: Endo Standard of Care with Soha Wahb of Lebanon
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 the difficulties of accessing expert care, such as how loosely the term endometriosis “specialist” is used, and the lack of set criteria and unwillingness among the general medical community to distinguish true optimal care from suboptimal care. We also had a thought provoking discussion about how the medical community in the region and worldwide needs to take initiative and responsibility in improving endometriosis care. 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 CONNECT WITH SOHA! --Instagram: @endoinarabic https://www.instagram.com/endoinarabic/ --YouTube: https://www.youtube.com/channel/UCfWcwXxl0l3TYr2H3qZPB8g
88:07 9/22/22
Ep96: The Psychological Toll of Medical Gaslighting
Updated 10/2023. 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
74:40 9/8/22
Ep95: Interview: Endometriosis Guidelines with Kate Boyce
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 for, how they are formed and what data is used. The focus is on the ACOG guidelines but the ESHRE and Australia guidelines are briefly mentioned for some comparative purposes. 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 CONNECT WITH KATE: INSTAGRAM: @endogirlsblog WEBSITE: https://endogirlblog.com/ SOURCES: Clickable links at insixteenyears.com/episode95 --ESHRE Guideline Endometriosis 2022 --RANZCOG Endometriosis clinical practice guideline --Excision of Endometriosis - CEC website --The Road Not Taken v. The Easy Path - CEC website --The Standard of Care is Not Sufficient! - CEC website --Kalaitzopoulos, D.R., Samartzis, N., Kolovos, G.N. et al. Treatment of endometriosis: a review with comparison of 8 guidelines. BMC Women's Health 21, 397 (2021). https://doi.org/10.1186/s12905-021-01545-5 --Ceccaroni M, Clarizia R, Mussi EA, Stepniewska AK, De Mitri P, Ceccarello M, Ruffo G, Bruni F, Rettore L, Surico D. "The Sword in the Stone": radical excision of deep infiltrating endometriosis with bowel shaving-a single-centre experience on 703 consecutive patients. Surg Endosc. 2022 May;36(5):3418-3431. doi: 10.1007/s00464-021-08663-z. Epub 2021 Jul 26. Erratum in: Surg Endosc. 2021 Oct 12;: PMID: 34312725.
73:23 8/24/22
Ep94: The Medical vs Social Model of Disability. Part 2
Updated 10/2023. 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://ko-fi.com/insixteenyears SOURCES: Clickable links at insixteenyears.com/episode94 --Chronic illness and Disability, intersection and separation - On "The Way We Roll" podcast --A Brief History of the Disability Rights Movement --Crip Camp - Documentary --Arthur A. Mirin. Gender Disparity in the Funding of Diseases by the U.S. National Institutes of Health. Journal of Women's Health. Jul 2021.956-963. http://doi.org/10.1089/jwh.2020.8682
62:33 7/28/22
Ep93: The Medical vs Social Model of Disability. Part 1
Updated 10/2023. 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 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 SOURCES: Clickable links at insixteenyears.com/episode93 --Disability Impacts All of Us - from the CDC website --The Social Model of Disability - PDF download by Inclusion London --Models of Disability: Types and Definitions - by Disabled World --Social model of disability - by People with Disability Australia --What is Ableism - by Disability and Philanthropy Forum
33:49 7/16/22
Ep92: Hormonal Medication Options for Endometriosis
Updated 1/2024. 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 types of hormones, such as combined hormonal contraceptives, progestins, and GnRh drugs. Many doctors will tell their patient that X drug is the only option available to try and manage symptoms, but this isn’t true. We discuss efficacy, side effects, and first line vs second line treatment. 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 SOURCES: Clickable links at insixteenyears.com/episode92 --Hormonal Medications - from Nancy's Nook --Donnez J, Dolmans MM. Endometriosis and Medical Therapy: From Progestogens to Progesterone Resistance to GnRH Antagonists: A Review. J Clin Med. 2021 Mar 5;10(5):1085. doi: 10.3390/jcm10051085. PMID: 33807739; PMCID: PMC7961981. --Resources on Lupron. --Resources on Orilissa.
68:33 7/1/22
Ep91: What Can Hormonal Suppression Actually Do For Endometriosis?
Updated 1/2024. 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, and talk about how hormones can’t clean up or remove endo. Endometriosis can still progress and recur while a person is taking hormones, and hormones can’t diagnose endo either. Hormonal suppression helps many of us in this community with our symptoms and may allow some of us to have a better quality of life. But hormones also have side effects, so it’s important to understand the limitations of hormonal suppression so that we can make an informed decision on what is best our individual situation. 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 SOURCES: Clickable links at insixteenyears.com/episode91 --Endometriomas - from my website. --Hormonal Suppression - from my website --Gheorghisan-Galateanu AA, Gheorghiu ML. Hormonal Therapy in Women of Reproductive Age with Endometriosis: An Update. Acta Endocrinol (Buchar). 2019;15(2):276-281. doi:10.4183/aeb.2019.276 --Donnez J, Dolmans MM. Endometriosis and Medical Therapy: From Progestogens to Progesterone Resistance to GnRH Antagonists: A Review. J Clin Med. 2021;10(5):1085. Published 2021 Mar 5. doi:10.3390/jcm10051085 --Evers JL. The second-look laparoscopy for evaluation of the result of medical treatment of endometriosis should not be performed during ovarian suppression. Fertil Steril. 1987 Mar;47(3):502-4. doi: 10.1016/s0015-0282(16)59062-1. PMID: 2951279. --Luprolide - the D is silent. 300 page report to the FDA on Lupron by Dr. David Redwine. --Zoladex: Does it really treat endometriosis? by Endogirlsblog --Shaw RW. An open randomized comparative study of the effect of goserelin depot and danazol in the treatment of endometriosis. Zoladex Endometriosis Study Team. Fertil Steril. 1992 Aug;58(2):265-72. doi: 10.1016/s0015-0282(16)55205-4. PMID: 1386029. --THE BUSINESS OF BIRTH CONTROL - Documentary homepage.
92:00 6/18/22

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