In Sixteen Years of Endometriosis

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

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

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

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

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

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

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

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

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

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

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

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.

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

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

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

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

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

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

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.

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