In Sixteen Years of Endometriosis

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: @endosurvivorsLinkedIn and Facebook: EndoSurvivors International FoundationDonations: 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 through our website. 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 through our website. 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! 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! 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! 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! 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!

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!

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!

We finalize our excision series by speaking about how endometriosis rates of recurrence for excision vary throughout the literature, and some factors that may 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!

As we continue our excision series, we talk about the difference between persistence vs recurrence and dive deeper into facts around excision. UPDATE: when I said endo is more prevalent than arthritis, I actually meant to say rheumatoid arthritis (not overall arthritis). CONNECT WITH US! INSTAGRAM: @in16yearsofendo WEBSITE AND RESOURCES: insixteenyears.com LIKE OUR SHOW? Please rate it or leave a review!

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!

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 our website. CONNECT WITH US! INSTAGRAM: @in16yearsofendo WEBSITE AND RESOURCES: insixteenyears.com LIKE OUR SHOW? Please rate it or leave a review!

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 typically considered a restrictive diet, we talk about some of the limiting beliefs we had, and mindset shifts we made that have helped us to embrace the diets we've chosen. This helps us feel more empowered and motivated instead of deprived and resentful. (Important: Diet and lifestyle changes may help manage symptoms, but they cannot cure or treat endometriosis. Your endo can still progress even if you change your diet and no longer experience symptoms.) CONNECT WITH US! INSTAGRAM: @in16yearsofendo WEBSITE AND RESOURCES: insixteenyears.com LIKE OUR SHOW? Please rate it or leave a review!

With endo and chronic illness, it can feel uncomfortable, vulnerable, or downright scary to ask for help, set boundaries, or do what we need to take care of ourselves in public situations (example: using a standing desk at the office or bringing our own meal to a catered event). We talk about the concept of ordinary courage that we have in our daily lives. CONNECT WITH US! INSTAGRAM: @in16yearsofendo WEBSITE AND RESOURCES: insixteenyears.com LIKE OUR SHOW? Please rate it or leave a review!

The color of endometriosis is one of the most important factors for a surgeon to identify it, but unfortunately, many doctors haven't been trained to recognize all the visual appearances of endo. Which means that an untrained gynecologist could miss endo during surgery, leading to misdiagnosis or leaving endo behind during surgery. We talk about the various appearances of endo as well as give information on the debate around microscopic endo. CONNECT WITH US! INSTAGRAM: @in16yearsofendo WEBSITE AND RESOURCES: insixteenyears.com LIKE OUR SHOW? Please rate it or leave a review!

We discuss finding meaning in our lives. What gives us meaning? Why is meaning important? How can we find more time for the things that give us joy? 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!

We discuss HRT, everything from what it is, the type of doctor you may see for HRT, hormone testing, to how you take it (oral, pellet, patch, etc). We also discuss the studies on the safety of HRT. CONNECT WITH US! INSTAGRAM: @in16yearsofendo WEBSITE AND RESOURCES: insixteenyears.com LIKE OUR SHOW? Please rate it or leave a review!

We talk about the life transition from having regular cycles to going through perimenopause to being in menopause. We discuss what perimenopause is, how we may know if we are in it, what symptoms we may have during this time, and the potential benefits progesterone can have. CONNECT WITH US! INSTAGRAM: @in16yearsofendo WEBSITE AND RESOURCES: insixteenyears.com LIKE OUR SHOW? Please rate it or leave a review!

We are back with Wendy Bingham DPT, founder of the non-profit ExtraPelvic Not Rare, which is dedicated to starting conversation about extrapelvic endometriosis, while providing correct, up-to-date information about the signs and symptoms, diagnostics, and appropriate treatment referrals. In this episode, we speak about thoracic endometriosis: what it is, the symptoms, the treatment, how it's diagnosed and more. Wendy also tells us her vision for the future of endo treatment. WENDY'S WEBSITE: extrapelvicnotrare.org WENDY'S INSTAGRAM: @extrapelvicnotrare WENDY'S FB GROUP: ExtraPelvic Not Rare Endo Support and Education Group LIKE OUR SHOW? Please rate it or leave a review! CONNECT WITH US! INSTAGRAM: @in16yearsofendo WEBSITE AND RESOURCES: insixteenyears.com

CW: Brief mention of suicidal ideation. // What is happiness? Is it possible to have while living with endo and other chronic illnesses? If so, how can we find it? We explore the idea that happiness is a skill that can be learned and share our experiences trying to find happiness anyways in spite of the many challenges that living with endo brings. 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!

CW: Removal of the uterus, hysterectomy and what that means for pregnancy and for us as a person, body dysphoria, invasive medical procedures, discrimination, trauma. // We speak with Bee Lynn on the topic of why inclusion and representation are important within the endometriosis community. Bee (they/them) is a patient advocate as well as social activist. They are the creator of the Mean Patient Advocate, and a co-founder of the Endo Crisis Connection, which is a nonprofit dedicated to supporting people with endometriosis through the difficulties of living with this disease. Bee identifies as nonbinary and one of their missions is to make the endometriosis advocacy space more inclusive and welcome to all. CONNECT WITH BEE! INSTAGRAM AND TIKTOK: @BeeLynnNYC CONNECT WITH US! INSTAGRAM: @in16yearsofendo WEBSITE AND RESOURCES: insixteenyears.com LIKE OUR SHOW? Please rate it or leave a review!

In our final episode on the basics of hormone health, we talk about some common supplements that may help support hormone health, the importance of sleep and healthy fats, and progesterone and anovulatory cycles. LIKE OUR SHOW? Please rate it or leave a review! CONNECT WITH US! INSTAGRAM: @in16yearsofendo WEBSITE AND RESOURCES: insixteenyears.com

Continuing our talk on hormones from the previous episode, we talk about how stress, gut health, and exercise habits can affect our hormones. LIKE OUR SHOW? Please rate it or leave a review! CONNECT WITH US! INSTAGRAM: @in16yearsofendo WEBSITE AND RESOURCES: insixteenyears.com

This will be a 2 part series on hormones, with a 2 part series on HRT after that. In this episode, we talk about how we may find ourselves in the hormone jungle (or tundra!) and the role hormones play in various bodily functions. We go over the basics of steroid and nonsteroid hormones. We explain about the importance of ovulation in relation to progesterone and overall health, and explains ways to know if you are ovulating. LIKE OUR SHOW? Please rate it or leave a review! CONNECT WITH US! INSTAGRAM: @in16yearsofendo WEBSITE AND RESOURCES: insixteenyears.com

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 endometriosis treatments, excision surgery, and endometriosis recurrence. This is part 2 of 2. LIKE OUR SHOW? Please rate it or leave a review! CONNECT WITH US! INSTAGRAM: @in16yearsofendo WEBSITE AND RESOURCES: insixteenyears.com

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 www.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 and will talk about his theory of the embryonic origin of endo in our interview today. We also tells us why he considers Sampson's theory of retrograde menstruation the most dangerous theory in the history of medicine, explains what endo does in the body, and speaks about obstacles to endometriosis treatment. This is part 1 of 2. LIKE OUR SHOW? Please rate it or leave a review! CONNECT WITH US! INSTAGRAM: @in16yearsofendo WEBSITE AND RESOURCES: insixteenyears.com

CW: Eating for comfort. As we continue to examine our relationship with food here in part 2, we talk about the general and common practice of “eating our feelings” and using food to soothe our feelings instead of actually being with them. We discuss the importance of learning to be with our feelings, and some tips for paying attention to food cravings to see if there is actually an “emotional craving” behind them. LIKE OUR SHOW? Please rate it or leave a review! CONNECT WITH US! INSTAGRAM: @in16yearsofendo WEBSITE AND RESOURCES: insixteenyears.com

CW: fear of food, reluctance to eat, being obsessive and controlling with food. For many with endo, eating can be a struggle as it may lead to digestive symptoms, constipation, diarrhea, nausea, pain, fatigue, and other horrible symptoms. This may lead us to change our diet, which can feel restrictive, limited, or depriving. Or it may cause us to begin to fear eating, since eating often causes us a terrible flare. For Amy, eating is one of her biggest challenges and the source of many flares, and that led to her having a very unhealthy relationship with food. We talk about how we've personally been able to let go of the fear around eating and have a much better relationship with food. LIKE OUR SHOW? Please rate it or leave a review! CONNECT WITH US! INSTAGRAM: @in16yearsofendo WEBSITE AND RESOURCES: insixteenyears.com

While endometriosis primarily affects people assigned female at birth (AFAB), not everyone who has endometriosis and is AFAB identifies as a woman. We speak with Lori Johansson about gender, gender identity, and ways to be more inclusive in our endometriosis advocacy. Lori is a nonbinary endo advocate with both endo and adeno, and as part of their position at public university, they facilitate a community engaged learning course that incorporates discussion around social identities, intersectionality, and counter narratives. Lori is dedicated to spreading awareness of endometriosis and creating supportive and inclusive spaces for those impacted by this disease. LIKE OUR SHOW? Please rate it or leave a review! CONNECT WITH US! INSTAGRAM: @in16yearsofendo WEBSITE AND RESOURCES: insixteenyears.com CONNECT WITH LORI! INSTAGRAM: @lori.johansson.art THE TWO ENDO ADVOCATES MENTIONED IN THE EPISODE ARE: Les Henderson @endoqueer AND Bee @beelynnnyc

We talk about how we can have strong relationships, in general and especially as people living with chronic illness. We discuss some keys to relationship success (especially romantic relationships) and what Amy learned from her divorce. We also talk about how we are ALL worthy of love, which is something we want everyone to take away from this episode. Even though we have endo, we are not unlovable. Having endo doesn’t doom a relationship, even if we can’t be intimate with our partner, we need to be taken care of at times, or we have other situations we may find ourselves in.

We give an overview of estrogen in the bodies of people assigned female at birth, including the different types of estrogen and where they are made in the body. We talk in depth about the process of estrogen metabolism, the role of the liver and the gut, what we can do to help this process, and why it’s important. LIKE OUR SHOW? Please rate it or leave a review! CONNECT WITH US! INSTAGRAM: @in16yearsofendo WEBSITE AND RESOURCES: insixteenyears.com

Is it possible to find peace with the pain, the symptoms, and the countless ways endo devastates our lives? We discuss our own journeys of searching for peace - what ‘finding peace’ means to us, what benefits it has brought us, and where we are in terms of acceptance. While there is no ‘correct way’ to find peace, we give some ideas on how a person could start, especially if the idea of acceptance currently seems out of reach. We also talk about how it’s ok to be exactly where you are. This is one of our most beautiful episodes, and it’s in honor of Amy’s recently published book, called “Finding Peace with a Devastating Disease” by Amy Corfeli. Amy’s book is available worldwide on major bookstores like Amazon, Apple, Barnes and Noble, and more. Paperback available on Amazon in the US, UK, Canada, and other regions. LIKE OUR SHOW? Please rate it or leave a review! CONNECT WITH US! INSTAGRAM: @in16yearsofendo WEBSITE AND RESOURCES: insixteenyears.com

Wrapping up Endometriosis Awareness Month, we are back for part 2 with Wendy Bingham DPT, founder of the non-profit ExtraPelvic Not Rare, which is dedicated to starting conversation about extrapelvic endometriosis, while providing correct, up-to-date information about the signs and symptoms, diagnostics, and appropriate treatment referrals. In this episode, we speak about what different cases of endometriosis in animals could mean for the origin of the disease. We also talk about the association between endometriosis and cardiovascular disease. WENDY'S WEBSITE: extrapelvicnotrare.org WENDY'S INSTAGRAM: @extrapelvicnotrare WENDY'S FB GROUP: ExtraPelvic Not Rare Endo Support and Education Group LIKE OUR SHOW? Please rate it or leave a review! CONNECT WITH US! INSTAGRAM: @in16yearsofendo WEBSITE AND RESOURCES: insixteenyears.com

As a part of Endometriosis Awareness Month, we speak with Wendy Bingham DPT, the founder of the non-profit called ExtraPelvic Not Rare, which is dedicated to starting conversation about extrapelvic endometriosis, while providing correct, up-to-date information about the signs and symptoms, diagnostics and appropriate treatment referrals. In this episode, we speak about why the definition of endometriosis desperately needs an overhaul and the proposed definitions from the scientific community for it. Likewise, we speak about the problems with the current definition of extrapelvic endo. We discuss the ICD (International Classification of Diseases) codes and why these negatively affect our ability to truly know the statistics of extrapelvic endo. Finally, we talk about various theories to the origin of endo, and why it’s vital that the medical community understand that extrapelvic disease is much more common than they believe. WENDY'S WEBSITE: extrapelvicnotrare.org WENDY'S INSTAGRAM: @extrapelvicnotrare WENDY'S FB GROUP: ExtraPelvic Not Rare Endo Support and Education Group LIKE OUR SHOW? Please rate it or leave a review! CONNECT WITH US! INSTAGRAM: @in16yearsofendo WEBSITE AND RESOURCES: insixteenyears.com

In honor of March and Endometriosis Awareness Month, we are thrilled to speak with Heather Guidone, Board Certified Patient Advocate, and Program Director of the Center for Endometriosis Care in Atlanta, GA. Heather is responsible for the CEC’s comprehensive multidisciplinary care program, clinical research facilitation, disease education and legislative/public policy endeavors to promote better care for endometriosis and pelvic pain gynepathologies. She also coordinates the CEC's MIGS/Endometriosis Surgical Fellowship Program. Heather has focused on 'bench to beltway to bedside' efforts in endometriosis education, research, policy reform, patient-centered care and more for nearly thirty years, but most importantly, she has also personally struggled with advanced endometriosis, adenomyosis and infertility herself and brings a unique perspective her professional works. In this episode, Heather speaks about a variety of topics related to endo, including excision surgery, the standard of care, obstacles to treatment, and what endo actually does in the body. LIKE OUR SHOW? Please rate it or leave a review! CONNECT WITH US! INSTAGRAM: @in16yearsofendo WEBSITE AND RESOURCES: insixteenyears.com

In part 2, we talk about how endometriosis is different from the endometrium in terms of its estrogen and progesterone receptors. These directly affect the biological processes of the endometriotic tissue, causing it to act differently than the endometrium does in response to estrogen and progesterone, ultimately leading to… you guessed it! Pain and inflammation! LIKE OUR SHOW? Please rate it or leave a review! CONNECT WITH US! INSTAGRAM: @in16yearsofendo WEBSITE AND RESOURCES: insixteenyears.com

Endometriosis is tissue that is SIMILAR to the endometrium (uterine lining) but it is NOT the endometrium. Yet many websites, medical bodies, well-meaning advocates, and even misinformed doctors continue to get the definition of endo incorrect. Is it really such a big deal to know that endo is NOT the endometrium? Yes, because the two tissues act differently in the body! We talk about some ways that endo and the endometrium differ, and why this is so important to know in terms of treatment options. This episode is part 1 of 2! LIKE OUR SHOW? Please rate it or leave a review! CONNECT WITH US! INSTAGRAM: @in16yearsofendo WEBSITE AND RESOURCES: insixteenyears.com

What role does estrogen play in endometriosis? How does endo make its own estrogen? Can endo still progress and/or cause pain when a person is in medical menopause? Do people with endo have estrogen dominance? Why does the body need estrogen? What factors should we consider if thinking about taking estrogen HRT? We answer all of these questions and more! LIKE OUR SHOW? Please rate it or leave a review! CONNECT WITH US! INSTAGRAM: @in16yearsofendo WEBSITE AND RESOURCES: insixteenyears.com

Many of us follow some kind of special way of eating to help reduce our pain, fatigue, or flares. This could be the endo diet, the Paleo diet, an anti-inflammatory 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 typically considered a restrictive diet, we talk about some of the language and mindset shifts that have helped us to stop hating the dietary choices we follow, and instead feel empowered and have a more pleasant experience with eating. (Important: Diet and lifestyle changes may help manage symptoms, but they cannot cure, prevent, or treat endometriosis.) CONNECT WITH US! INSTAGRAM: @in16yearsofendo WEBSITE AND RESOURCES: insixteenyears.com

Many of us with chronic illness feel like a burden. We find ourselves apologizing often, feeling guilty when we ask for help, and not setting boundaries/ pushing ourselves in order to overcompensate for having endo and being a ‘burden.’ We talk about why we feel this way, why we are NOT a burden, and how to learn to appreciate our value. CONNECT WITH US! INSTAGRAM: @in16yearsofendo WEBSITE AND RESOURCES: insixteenyears.com

We all know that sleep is important and that we should get enough sleep, but this can be hard to put into practice. This is episode 1 of our 4 part sleep series to get better sleep. Today, we explore why sleep is so important. Why do we need sleep? What happens when we sleep? What are the consequences of not getting enough sleep? How does not sleeping enough influence our pain levels? CONNECT WITH US! INSTAGRAM: @in16yearsofendo WEBSITE AND RESOURCES: insixteenyears.com

Gratitude has many benefits and can even change the way we feel about our lives, but it can be hard to practice when we are suffering and exhausted from our endometriosis symptoms and challenges. We talk about how powerful stories are and how books, movies, and connecting with each other in this community can help us find gratitude, inspiration, and strength. CONNECT WITH US! INSTAGRAM: @in16yearsofendo WEBSITE AND RESOURCES: insixteenyears.com

This is the final episode in our 4 part series on medicine’s sex and gender bias, in which we continue to focus on how this bias affects womxn’s care. Today, we wrap up everything we spoke about in the previous 3 episodes, with an emphasis on ‘medically unexplained symptoms,’ mental health referrals, and stereotypes around being distressed about symptoms. We also continue to discuss results from a 2018 theory-guided literature review which looked into how gender bias and gender norms have affected medical treatment, specifically for men and womxn with chronic pain. Finally, we give tips on what we can do to receive better care now that we know the sex and gender bias exists. CONNECT WITH US! INSTAGRAM: @in16yearsofendo WEBSITE AND RESOURCES: insixteenyears.com

Ever had a flare that was so incredibly awful you felt like you were in an actual horror story? Amy tells us about a time when her period unexpectedly came while she was sightseeing on vacation (by herself) and her struggle to make it back to the semi-privacy of the hostel. Afterward, because she felt so mortified by what had happened, she couldn’t stop judging and tearing herself down with her cruel self-talk. She had no self-compassion for herself, and that worsened an already traumatic and unbearable situation. We talk about why self-compassion is important, what it is, and a few ways we can practice it. CONNECT WITH US! INSTAGRAM: @in16yearsofendo WEBSITE AND RESOURCES: insixteenyears.com