In Sixteen Years of Endometriosis Amy and Brittany

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.







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Soha Wahb (she/her) is a Lebanese medical student at the American University of Beirut, and founder of “Endo In Arabic”, an initiative that aims to provide accurate information about Endometriosis in both English and Arabic, and to shed light on patients’ struggles and the factors hindering access to proper care.







In this episode, Soha brings forth her perspectives of being both a patient and healthcare professional to talk about 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