In Sixteen Years of Endometriosis

Updated 4/2023. Part 2 - Why Science Knows Less About the Bodies of Women and People Assigned Female at Birth.

Amy and Brittany talk about:

—why less is known about disease presentations and side effects for medications for women and people AFAB

—some of the federal regulations in the US that led to this

—some ridiculous examples of studies that failed to include people AFAB in their research

🔗RESOURCES🔗

For clickable links to the resources below, go to www.insixteenyears.com/episode46

🔗Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick by Maya Dusenbery.

🔗Regulations, Guidance, and Reports related to Women’s Health – FDA landing page which has a timeline and links to the different reports we mentioned.

🔗Women’s Health Research: Progress, Pitfalls, and Promise (2010) – Report from the Committee on Women’s Health Research and Institute of Medicine.

🔗Gender Disparity in the Funding of Diseases by the U.S. National Institutes of Health. Arthur A. Mirin. Journal of Women’s Health. Jul 2021.956-963. http://doi.org/10.1089/jwh.2020.8682

🔗The breast/uterine cancer study with no women invited 

🔗How Long Does Lupron or Its Metabolites Circulate? No One Really Knows – Article by Lynn Millican on the website Hormones Matter. 

🔗How the FDA let women down – Article on Drugwatch.

🔗2015 – 2016 Global Participation in Clinical Trials Report – This link will download the PDF report from the FDA.

🔗Racial and Ethnic Minorities in Clinical Trials – FDA landing page which has links and resources.

☀️CONNECT WITH AMY☀️

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Website: www.insixteenyears.com

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⚠️DISCLAIMER⚠️

The information on my platforms is educational information only and not medical advice. Always check with your qualified medical professional before making any changes to your treatment plan. Keep in mind that while I strive to share evidenced-based information, this doesn’t always mean that my information is accurate or complete. Read my full disclaimer here: https://insixteenyears.com/disclaimer/

Today, Amy speaks with Teniola Ongunro about racial bias:

—how it can be one of the most detrimental and undercutting barriers for BIPOC in getting proper diagnosis and treatment

—how doctors may have implicit and explicit biases

—some ways it can affect healthcare and what we can do about it

🎤WHO IS TENIOLA ONGUNRO?🎤

Teniola Ongunro is an endo warrior born in Nigeria who hosts the podcast ‘Not Defined By Endo’

🔗RESOURCES🔗

For clickable links to the resources below, go to www.insixteenyears.com/episode45

🔗Just Medicine: A Cure for Racial Inequality in American Health Care Book by Dayna Matthews

🔗So You Want to Talk About Race Book by Ijeoma Oluo

🔗How We Fail Black Patients in Pain

🔗Research explores racial bias in medical care across nations

🔗Racism, Inequality, and Health Care for African Americans

🔗Racial/Ethnic Disparities in Pregnancy-Related Deaths — United States, 2007–2016

🔗US Department of Health and Human Services. Profile: Black/African American

🔗Racial Bias Found in a Major Health Care Risk Algorithm

🔗FitzGerald, C., Hurst, S. Implicit bias in healthcare professionals: a systematic review. BMC Med Ethics 18, 19 (2017). https://doi.org/10.1186/s12910-017-0179-8

🔗Myths and Misconceptions Perpetuating Racism in Endometriosis, Infertility, and Pelvic Pain. – several African American advocates share their experiences on navigating endo

☀️CONNECT WITH TENI☀️

Instagram @notdefinedbyendo

☀️CONNECT WITH AMY☀️

Instagram @in16yearsofendo

Website: www.insixteenyears.com

Like my show? Please rate it or leave a review!

Support me by buying me a coffee: https://ko-fi.com/insixteenyears

⚠️DISCLAIMER⚠️

The information on my platforms is educational information only and not medical advice. Always check with your qualified medical professional before making any changes to your treatment plan. Keep in mind that while I strive to share evidenced-based information, this doesn’t always mean that my information is accurate or complete. Read my full disclaimer here: https://insixteenyears.com/disclaimer/

Updated 4/2023. Part 1 - It's Not in Your Head.

Amy and Brittany talk about:

—how the sex and gender bias may negatively affect us

—how it may be partially responsible for the long delay in diagnosis for endo patients

—how we can face multiple biases depending on the identities we may hold

🔗RESOURCES🔗

For clickable links to the resources below, go to www.insixteenyears.com/episode44

🔗Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick by Maya Dusenbery

🔗Pain and Prejudice by Gabrielle Jackson

🔗BLEED: Destroying Myths and Misogyny in Endometriosis by Tracy Lindeman

🔗Why medicine often has dangerous side effects for women – Ted Talk by Alyson McGregor.

🔗Gender Bias in Medical Research: How It Operates and Why It Matters – General overview.

🔗Regulations, Guidance, and Reports related to Women’s Health – On the FDA website, it has important developments in US health regulations of women and people AFAB

🔗Sex matters: Drugs can affect sexes differently – CBS 60 minutes news report.

🔗How we fail black patients in pain – Article from the Association of American Medical Colleges.

🔗Racial bias in pain assessment and treatment recommendations, and false beliefs about biological differences between blacks and whites – “Racial bias in pain assessment.” Kelly M. Hoffman, Sophie Trawalter, Jordan R. Axt, M. Norman Oliver. Proceedings of the National Academy of Sciences Apr 2016, 113 (16) 4296-4301; DOI: 10.1073/pnas.1516047113

🔗10 Stats You Need to Know About LGBT Healthcare

🔗Sabin JA, Riskind RG, Nosek BA. Health Care Providers’ Implicit and Explicit Attitudes Toward Lesbian Women and Gay Men. Am J Public Health. 2015;105(9):1831-1841. doi:10.2105/AJPH.2015.302631

☀️CONNECT WITH AMY☀️

Instagram @in16yearsofendo

Website: www.insixteenyears.com

Like my show? Please rate it or leave a review!

Support me by buying me a coffee: https://ko-fi.com/insixteenyears

⚠️DISCLAIMER⚠️

The information on my platforms is educational information only and not medical advice. Always check with your qualified medical professional before making any changes to your treatment plan. Keep in mind that while I strive to share evidenced-based information, this doesn’t always mean that my information is accurate or complete. Read my full disclaimer here: https://insixteenyears.com/disclaimer/

Updated 2/2023. Amy and Brittany talk about:

—how endometriosis is NOT the endometrium

—an alternate definition of endo as suggested by researchers

—fun new names for endo

🔗RESOURCES🔗

For clickable links to the resources below, go to www.insixteenyears.com/episode43

🔗P Vigano, M Candiani, A Monno, E Giacomini, P Vercellini, E Somigliana, Time to redefine endometriosis including its pro-fibrotic nature, Human Reproduction, Volume 33, Issue 3, March 2018, Pages 347–352, https://doi.org/10.1093/humrep/dex354

🔗David Redwine, MD – Origin of Endometriosis: Cartoon Science vs Evidence-based Medicine

🔗Is endometriosis an autotransplant? – Article on Endopaedia.info with differences between endometriosis and the endometrium.

🔗Diagnostic value of hemosiderin laden macrophages in histologically proven endometriosis – M.A. Bedaiwy, S. Gupta, J. Noriega, J. Brainard, A. Agarwal, T. Falcone. September 01, 2008. DOI: https://doi.org/10.1016/j.fertnstert.2008.07.1133

☀️CONNECT WITH AMY☀️

Instagram @in16yearsofendo

Website: www.insixteenyears.com

Like my show? Please rate it or leave a review!

Support me by buying me a coffee: https://ko-fi.com/insixteenyears

⚠️DISCLAIMER⚠️

The information on my platforms is educational information only and not medical advice. Always check with your qualified medical professional before making any changes to your treatment plan. Keep in mind that while I strive to share evidenced-based information, this doesn’t always mean that my information is accurate or complete. Read my full disclaimer here: https://insixteenyears.com/disclaimer/

Updated 4/2023. Amy and Brittany talk about:

—chemical and mechanical digestion, fermented foods, and supplements

—how intermittent fasting and filtering our water has helped us personally with digestive problems

—how Amy improved her digestive and gut health 3 different times: from chronic diarrhea, gastritis, and gut dysbiosis/pathogenic infection

🔗RESOURCES🔗

For clickable links to the resources below, go to www.insixteenyears.com/episode42

🔗SIBO

🔗Gut health

🔗Intermittent Fasting for Women: What We Know Now

🔗Water filters

☀️CONNECT WITH AMY☀️

Instagram @in16yearsofendo

Website: www.insixteenyears.com

Like my show? Please rate it or leave a review!

Support me by buying me a coffee: https://ko-fi.com/insixteenyears

⚠️DISCLAIMER⚠️

The information on my platforms is educational information only and not medical advice. Always check with your qualified medical professional before making any changes to your treatment plan. Keep in mind that while I strive to share evidenced-based information, this doesn’t always mean that my information is accurate or complete. Read my full disclaimer here: https://insixteenyears.com/disclaimer/

Updated 4/2023. Amy and Brittany talk about:

—the gut microbiome

—probiotics, prebiotics

—stool samples

—general tips for having good gut and digestive health

🔗RESOURCES🔗

For clickable links to the resources below, go to www.insixteenyears.com/episode41

🔗SIBO

🔗Gut health

🔗The ultimate quick-start guide to the gut microbiome - by Lucy Mailing PhD

🔗Practical Steps for Healing the Gut – with Michael Ruscio

🔗A comprehensive guide to stool and microbiome testing - by Lucy Mailing PhD

🔗Probiotics - by Lucy Mailing PhD

🔗McFarland LV, Evans CT, Goldstein EJC. Strain-Specificity and Disease-Specificity of Probiotic Efficacy: A Systematic Review and Meta-Analysis. Front Med (Lausanne). 2018 May 7;5:124. doi: 10.3389/fmed.2018.00124. PMID: 29868585; PMCID: PMC5949321.

☀️CONNECT WITH AMY☀️

Instagram @in16yearsofendo

Website: www.insixteenyears.com

Like my show? Please rate it or leave a review!

Support me by buying me a coffee: https://ko-fi.com/insixteenyears

⚠️DISCLAIMER⚠️

The information on my platforms is educational information only and not medical advice. Always check with your qualified medical professional before making any changes to your treatment plan. Keep in mind that while I strive to share evidenced-based information, this doesn’t always mean that my information is accurate or complete. Read my full disclaimer here: https://insixteenyears.com/disclaimer/

Updated 2/2023. There are so many negative ways that endometriosis can affect our life, from living with chronic or acute pain, infertility, or fatigue, to affecting our relationships, to making it difficult to work or study or go after our dreams. But since endo can also cause us to rethink and even rebuild our life, we might find new sources of joy or figure out what really matters to us. Have you found any “silver linings” because of endo? Amy and Brittany talk about some of the good that it’s brought to our life, and how we were able to notice the good among all the challenges.

☀️CONNECT WITH AMY☀️

Instagram @in16yearsofendo

Website: www.insixteenyears.com

Like my show? Please rate it or leave a review!

Support me by buying me a coffee: https://ko-fi.com/insixteenyears

Amy's 📖Finding Peace with a Devastating Disease by Amy Corfeli

⚠️DISCLAIMER⚠️

The information on my platforms is educational information only and not medical advice. Always check with your qualified medical professional before making any changes to your treatment plan. Keep in mind that while I strive to share evidenced-based information, this doesn’t always mean that my information is accurate or complete. Read my full disclaimer here: https://insixteenyears.com/disclaimer/

Episode updated 11/2022. Amy and Brittany talk about Lupron:

—how patients - and even doctors! - are not always fully informed of the side effects that can occur from taking Lupron.

—the information available on the potential long term risks

—how knowing the potential risks can help us make more informed decisions

🔗RESOURCES🔗

For clickable links to the resources below, go to www.insixteenyears.com/lupron

🔗Lupron

☀️CONNECT WITH AMY☀️

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Website: www.insixteenyears.com

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Support me by buying me a coffee: https://ko-fi.com/insixteenyears

Updated 1/2024. Amy and Brittany talk about how there are generally 3 accepted forms of endometriosis:

—Superficial, Ovarian Endometrioma (OME), and Deeply infiltrating endometriosis (DIE).

—how each type can cause pain and symptoms and deserve expert care.

🔗RESOURCES🔗

For clickable links to the resources below, go to www.insixteenyears.com/episode38

🔗Endometriomas - intro and links on my website.

🔗Endopaedia.info – Cystic Ovarian Endometrioma – Links to two articles on the topic.

🔗Isolated Ovarian Endometrioma: A History Between Myth and Reality – Caterina Exacoustos, MD, PhD, Giovanna De Felice, MD, Alessandra Pizzo, MD, Gabriele Centini, MD, Emilio Piccione, MD, Errico Zupi, MD. January 15, 2018. DOI: https://doi.org/10.1016/j.jmig.2017.12.026

🔗Koninckx PR, Oosterlynck D, D’Hooghe T, Meuleman C. Deeply infiltrating endometriosis is a disease whereas mild endometriosis could be considered a non-disease. Ann N Y Acad Sci. 1994 Sep 30;734:333-41. doi: 10.1111/j.1749-6632.1994.tb21763.x. PMID: 7978935.

🔗Ovarian Endometriosis – Article on Center for Endometriosis website.

🔗Donnez J, Nisolle M, Smoes P, Gillet N, Beguin S, Casanas-Roux F. Peritoneal endometriosis and “endometriotic” nodules of the rectovaginal septum are two different entities. Fertil Steril. 1996 Sep;66(3):362-8. PMID: 8751730.

--What if deep endometriotic nodules and uterine adenomyosis were actually two forms of the same disease? – Jacques Donnez, M.D., Ph.D., Marie-Madeleine Dolmans, M.D., Ph.D., Latifa Fellah, MD. February 02, 2019 DOI: https://doi.org/10.1016/j.fertnstert.2018.12.018

☀️CONNECT WITH AMY☀️

Instagram @in16yearsofendo

Website: www.insixteenyears.com

Like my show? Please rate it or leave a review!

Support me by buying me a coffee: https://ko-fi.com/insixteenyears

⚠️DISCLAIMER⚠️

The information on my platforms is educational information only and not medical advice. Always check with your qualified medical professional before making any changes to your treatment plan. Keep in mind that while I strive to share evidenced-based information, this doesn’t always mean that my information is accurate or complete. Read my full disclaimer here: https://insixteenyears.com/disclaimer/

Updated 8/2025. Amy and Brittany go into detail on:

—the side effects for Orilissa and Lupron and how they may affect our quality of life while taking the medication or after stopping it

—the implications of bone mineral density loss, especially for young adults.

🔗RESOURCES🔗

For clickable links to the resources below, go to www.insixteenyears.com/episode37

🔗Lupron

🔗Orilissa

☀️CONNECT WITH AMY☀️

Instagram @in16yearsofendo

Website: www.insixteenyears.com

Like my show? Please rate it or leave a review!

Support me by buying me a coffee: https://ko-fi.com/insixteenyears

⚠️DISCLAIMER⚠️

The information on my platforms is educational information only and not medical advice. Always check with your qualified medical professional before making any changes to your treatment plan. Keep in mind that while I strive to share evidenced-based information, this doesn’t always mean that my information is accurate or complete. Read my full disclaimer here: https://insixteenyears.com/disclaimer/