Listen Now

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

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.

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

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. This episode is a part of a short series I’m doing on endometriosis care and experiences globally. The problems with care, misinformation and lack of access to excision that the endometriosis community faces is a global problem, and I wanted to highlight the voices of a few advocates worldwide who are doing great work and who could speak on obstacles to care that they've come across and also report on obstacles to care that members of their respective regional support groups have experienced. Please keep in mind however that while they share their experiences and opinions, they don't speak for or represent all of the people in their country or region, just like when I speak about care I've encountered in the US, I'm not speaking for every person's experience in the US either. Many of our experiences are similar, but they are also each unique and individual to each of us and vary widely. All of the opinions expressed by the interviewees are their own.  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

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

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.

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

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

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.

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 --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. --Medication to Prevent Recurrence? from Nancy's Nook. --THE BUSINESS OF BIRTH CONTROL - Documentary homepage.

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. Today we talk about what the pelvic floor is, what pelvic floor physical therapy is, how it can help patients with endometriosis, how to find a pelvic floor physical therapist, and more! 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/episode90 CONNECT WITH DR. STEIN: --Beyond Basics Physical Therapy --Wellness x nature --Book: Heal Pelvic Pain --Book: Beating Endo: How to Reclaim Your Life from Endometriosis PFT RESOURCES: --Academy of Pelvic Health Physical Therapy --International Pelvic Pain Society --Herman & Wallace Pelvic Rehabilitation Institute

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 buying us a coffee: https://ko-fi.com/insixteenyears SOURCES: Clickable links at insixteenyears.com/episode89 --Perspectives on the Meaning of “Disability”. AMA J Ethics. 2016;18(10):1025-1033. doi: 10.1001/journalofethics.2016.18.10.pfor2-1610. --ADA National Network --ADA-AA Definition of a Disability – Super helpful and has the examples we mentioned in the episode. --My Disability Is Dynamic by Brianne Benness. --Ask Jan, Sample forms – Here you can find links to the Sample Medical Inquiry Form in Response to an Accommodation Request (the form we went over in the episode) and more. --Disability and Health Overview – WHO criteria found on the CDC website

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 us a coffee: https://ko-fi.com/insixteenyears

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

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 intention, peace, and meaning in spite of the challenges this disease brings. 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

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 LIKE OUR SHOW? Please rate it or leave a review! SUPPORT US by buying us a coffee: https://ko-fi.com/insixteenyears Clickable links at insixteenyears.com/episode85 --See my Endo Overview Treatment section: insixteenyears.com/treatment --For resources for finding an excision surgeon, see my website: insixteenyears.com/how-to-find-a-specialist/ --For addressing post-excision pain: insixteenyears.com/addressing-pain-post-excision/

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: @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/episode84 --See my Endo Overview Treatment section: insixteenyears.com/treatment --For resources for finding an excision surgeon, see my website: insixteenyears.com/how-to-find-a-specialist/ --Why excision is recommended. Article from Nancy’s Nook. --Cindy M. Mosbrucker MD, David B. Redwine MD. The Cost Effectiveness of Surgical Excision of Endometriosis: an unpublished study. Endometriosis Institute of Oregon. --Gurkan Bozdag. Recurrence of Endometriosis: Risk Factors, Mechanisms and Biomarkers. Women’s Health, Volume: 11 issue: 5, page(s): 693-699. Article first published online: September 12, 2016; Issue published: September 1, 2015. https://doi.org/10.2217/whe.15.56 --Francisco Carmona, Angeles Martínez-Zamora, Xavier González, Angeles Ginés, Laura Buñesch, Juan Balasch. Does the learning curve of conservative laparoscopic surgery in women with rectovaginal endometriosis impair the recurrence rate? Fertility and Sterility. Volume 92, ISSUE 3, P868-875, September 2009. DOI:https://doi.org/10.1016/j.fertnstert.2008.07.1738 --N.M. Donnellan,I.R. Fulcher,N.B. Rindo. Self-Reported Pain and Quality of Life Following Laparoscopic Excision of Endometriosis as Measured Using the Endometriosis Health Profile-30: A 5 Year Follow-Up Study. Journal of Minimally Invasive Gynecology. November–December 2018. https://doi.org/10.1016/j.jmig.2018.09.089 --Luigi Fedele, M.D., Stefano Bianchi, M.D., Giovanni Zanconato, M.D., Valentino Bergamini, M.D., Nicola Berlanda, M.D., Luca Carmignani, M.D. Long-term follow-up after conservative surgery for bladder endometriosis. Fertility and Sterility. Volume 83, ISSUE 6, P1729-1733, June 01, 2005. DOI:https://doi.org/10.1016/j.fertnstert.2004.12.047 --Abbott JA, Hawe J, Clayton RD, Garry R. The effects and effectiveness of laparoscopic excision of endometriosis: a prospective study with 2-5 year follow-up. Hum Reprod. 2003 Sep;18(9):1922-7. doi: 10.1093/humrep/deg275. PMID: 12923150. --Pain Relief after Excision of All Endometriosis. On Center for Endometriosis Care’s website.

Updated 12/2022. As we continue our excision series, we talk about the difference between persistence vs recurrence and dive deeper into facts around excision. We also continue our discussion on 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://ko-fi.com/insixteenyears SOURCES: Clickable links at insixteenyears.com/episode83 --See my Endo Overview Treatment section: insixteenyears.com/treatment --For resources for finding an excision surgeon, see my website: insixteenyears.com/how-to-find-a-specialist/ --Extra Pelvic Not Rare and Indian Center for Endometriosis talk Extra Pelvic Endometriosis – Great info on bowel endo. --Cutaneous/Skin Endometriosis – from ExtraPelvic Not Rare. --What is the cure rate following excision of endometriosis? – By Dr. David Redwine. --Was my surgery a failure? – By the CEC.

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). Additionally, she is an endometriosis educator and co-founder of the support group ”ENDOCRUSADERS” for people with endometriosis. In this episode, Dr. Bindra brings her experience as an excision surgeon to answer questions about excision, such as technique, the use of imaging pre-operatively, and surgery for endometriomas, bladder, and bowel endo. She also discusses the importance of having a multidisciplinary team and a patient-centered treatment approach. CONNECT WITH DR. BINDRA: clickable links at insixteenyears.com/episode82 --IG: @endometriosissurgeon_india --FB group: Endo Crusaders  --YouTube channel:Gynaec Facts  --Website: www.drvimeebindra.com --Twitter : Endometriosis Surgeon India @VimeeBindra  --Linkedin https://www.linkedin.com/in/dr-vimee-bindra-basu-7514765b/ 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