Kendall Soucie, an associate professor at the University of Windsor, has spoken with many people suffering with polycystic ovarian syndrome. She explains that in Canada, it can take anywhere from 5 to 15 years for a diagnosis. She tells us why studying the lived experiences of people with PCOS is an integral part to the research of this poorly-understood condition. Nam Kiwanuka speaks with Kendall about her hopes and how her own lived experience with it informs her work.

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If you, or someone you know, is struggling with mental health, visit any of the following resources for support: Canada.ca/mental-health

Kids Help Phone Call 1-800-668-6868 (toll-free) or text CONNECT to 686868.

The Government of Ontario's Mental Health Support Resources: https://www.ontario.ca/page/find-mental-health-support

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Research links

Canadian PCOS Resource List: https://www.healuwindsor.com/copy-of-canadian-pcos-resources 

Monash University:  PCOS Guideline and Resources - Monash Centre for Health Research and Implementation (MCHRI) 

PCOS Challenge: PCOS Challenge: The National Polycystic Ovary Syndrome Association 

The Season's collective (Ontario-specific): The Seasons Collective | Thriving with PCOS  

PCOS together: (Alberta): Home - PCOS.Together 

H.E.A.L Lab: https://www.healuwindsor.com 

Name change for ‘outdated’ PCOS term backed by majority of health professionals, patients: https://www.healio.com/news/womens-health-ob-gyn/20250606/name-change-for-outdated-pcos-term-backed-by-majority-of-health-professionals-patients 

The under-researched and often misunderstood disorder that affects 1 in 8 women: https://www.independent.co.uk/life-style/health-and-families/pcos-symptoms-name-change-meaning-b2759872.html 

The Diagnostic Experiences of Women With Polycystic Ovary Syndrome (PCOS) in Ontario, Canada: https://pubmed.ncbi.nlm.nih.gov/33213256/ 

“It Wasn’t Until I Took the Reins and Said….” Power and Advocacy in Canadian Women’s Narratives of Polycystic Ovary Syndrome Diagnosis and Treatment: https://www.tandfonline.com/doi/full/10.1080/23293691.2022.2054671 

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There's a good chance you've heard of Polycystic Ovary Syndrome (PCOS). By some estimates, nearly 1.4 million Canadians have it, but did you know it's sometimes called a 'lazy girl's disease'?  

Nam Kiwanuka discusses what it's like to have PCOS with actress and producer Andrea Lewis. They talk about the misconceptions of the condition, the symptoms women can experience, and how complex the condition can be, especially when dealing with the medical world's preconceptions.  

Got a question or comment? Email us at: [email protected]  

If you, or someone you know, is struggling with mental health, visit any of the following resources for support: Canada.ca/mental-health

Kids Help Phone Call 1-800-668-6868 (toll-free) or text CONNECT to 686868.  

The Government of Ontario’s Mental Health Support Resources: https://www.ontario.ca/page/find-mental-health-support

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https://www.instagram.com/mistreatedtvo  

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Research links

Polycystic ovary syndrome: https://www.who.int/news-room/fact-sheets/detail/polycystic-ovary-syndrome

Rethinking the Terminology: A Perspective on Renaming Polycystic Ovary Syndrome for an Enhanced Pathophysiological Understanding: https://pmc.ncbi.nlm.nih.gov/articles/PMC11528641

PCOS affects 1 in 8 women worldwide, yet it's often misunderstood. A name change might help: https://theconversation.com/pcos-affects-1-in-8-women-worldwide-yet-its-often-misunderstood-a-name-change-might-help-256872

Polycystic ovary syndrome (PCOS) is a big threat to women's health, but it's still under-recognized, under-diagnosed and under-treated: https://theconversation.com/polycystic-ovary-syndrome-pcos-is-a-big-threat-to-womens-health-but-its-still-under-recognized-under-diagnosed-and-under-tr...

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By 2050, global cancer rates are set to increase by 75 per cent, but the human impact is already being felt. Nam Kiwanuka speaks with Farrah Khan who was diagnosed with not one but two forms of cancer at the same time. They discuss what Farrah's diagnoses meant for her life, her young family, and her career.

Got a question or comment? Email us at: [email protected]

If you, or someone you know, is struggling with mental health, visit any of the following resources for support: Canada.ca/mental-health

Kids Help Phone Call 1-800-668-6868 (toll-free) or text CONNECT to 686868.  

The Government of Ontario’s Mental Health Support Resources: https://www.ontario.ca/page/find-mental-health-support

Follow TVO on social: https://www.youtube.com/theagenda

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Research links

Advocacy group urges Canada to lower starting age for colorectal-cancer screening: https://www.theglobeandmail.com/canada/article-advocacy-group-urges-canada-to-lower-starting-age-for-colorectal

Breast Cancer Isn't Just a 50+ Problem-So Why Are Younger Women Told Not to Worry?: https://www.ellecanada.com/beauty/health-and-fitness/breast-cancer-isnt-just-a-50-problem-so-why-are-younger-women-told-not-to-worry

Breast cancer screenings now easier to access at age 40 in most of Canada, though experts warn of more false positives: https://www.theglobeandmail.com/canada/article-ontario-breast-cancer-screenings-age-risk-benefit

Canada pauses health task force amid breast screening review: https://globalnews.ca/news/11065162/breast-cancer-screening-task-force-pause

Cancer risk in families: https://cancer.ca/en/cancer-information/what-is-cancer/genes-and-cancer/cancer-risk-in-families

New report released by the Canadian Cancer Society reveals that cancer costs the average patient nearly $33,000 in their lifetime: https://cancer.ca/en/about-us/media-releases/2024/cancer-statistics-special-report

New study reveals doctors in Canada are paid less for surgeries on women: https://www.sinaihealth.ca/news/new-study-reveals-doctors-in-canada-are-paid-less-for-surgeries-on-women

Ontario Increases Access to Breast Cancer Screening by Lowering Starting Age: https://www.ontariohealth.ca/news/breast-cancer-screening-lowering-starting-age

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In September, Donald Trump sparked a public health crisis when he claimed there was a link between the prenatal use of Tylenol and autism. The health and scientific community was quick to respond, citing studies that debunked his claims, but has the harm already been done? Nam Kiwanuka speaks with Dr. Rebecca Titman and pharmacist Najla Tabbara, who work at a clinic that addresses pain during pregnancy, at Mount Sinai Hospital in Toronto. They discuss the reasons why acetaminophen is recommended during pregnancy and why other medication shouldn't be used; and how doctors know it's safe to use.

Got a question or comment? Email us at: [email protected]

If you, or someone you know, is struggling with mental health, visit any of the following resources for support: Canada.ca/mental-health

Kids Help Phone Call 1-800-668-6868 (toll-free) or text CONNECT to 686868.  

The Government of Ontario’s Mental Health Support Resources: https://www.ontario.ca/page/find-mental-health-support

Follow TVO on social: https://www.youtube.com/theagenda

https://www.instagram.com/mistreatedtvo

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Imagine waiting for years, sometimes decades, to receive a diagnosis for an illness that's made you change every aspect of your life. If you're living with endometriosis, you probably understand this better than most. To learn more about this life-changing condition, Nam Kiwanuka speaks with gynaecological surgeon and sonologist Dr. Mathew Leonardi and researcher Shay Freger from McMaster University. They say the state of endo research has never been stronger, but that there's still a lot to be done to understand the scope of the condition's effect on women.

Got a question or comment? Email us at: [email protected]

The Endometriosis Network Canada: https://endometriosisnetwork.com

If you, or someone you know, is struggling with mental health, visit any of the following resources for support: Canada.ca/mental-health

Kids Help Phone Call 1-800-668-6868 (toll-free) or text CONNECT to 686868.  

The Government of Ontario’s Mental Health Support Resources: https://www.ontario.ca/page/find-mental-health-support

Follow TVO on social: https://www.youtube.com/theagenda

https://www.instagram.com/mistreatedtvo

Join our newsletter: https://www.tvo.org/newsletters

Visit the TVO Today website for current affairs journalism, documentaries and podcasts: https://www.tvo.org

Attractiveness of women with rectovaginal endometriosis: a case-control study: pubmed.ncbi.nlm.nih.gov/22985951

Closing the women's health gap: A $1 trillion opportunity to improve lives and economies: https://www.mckinsey.com/mhi/our-insights/closing-the-womens-health-gap-a-1-trillion-dollar-opportunity-to-improve-lives-and-economies

The phenotypic and genetic association between endometriosis and immunological diseases: https://pubmed.ncbi.nlm.nih.gov/40262193

Women with endometriosis say they are enduring extreme pain due to pandemic surgery delays, lack of expertise: https://www.cbc.ca/news/canada/british-columbia/woman-endure-endometriosis-pain-during-pandemic-1.6377249

Hysterectomy is more common, and occurs at younger ages, for women with less education:  https://theconversation.com/hysterectomy-is-more-common-and-occurs-at-younger-ages-for-women-with-less-education-237937

Meet Shay Freger: endometriosis researcher and greenhouse volunteer: https://news.mcmaster.ca/meet-shay-freger-endometriosis-researcher-and-greenhouse-volunteer

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Fibroids will impact up to 80% of women by age 50 so why don't we know what causes them? As celebrities like Oscar winner Lupita Nyong'o and tennis superstar Venus Williams share their stories on the challenges of living with fibroids, will this change things? Nam Kiwanuka speaks to entrepreneur, author and speaker Amber Mac about why she chose to talk publicly about her fibroids.

Got a question or comment? Email us at: [email protected]

If you, or someone you know, is struggling with mental health, visit any of the following resources for support: Canada.ca/mental-health

Kids Help Phone Call 1-800-668-6868 (toll-free) or text CONNECT to 686868.  

The Government of Ontario’s Mental Health Support Resources: https://www.ontario.ca/page/find-mental-health-support

Follow TVO on social: https://www.youtube.com/theagenda 
https://www.instagram.com/mistreatedtvo

Join our newsletter: https://www.tvo.org/newsletters

Visit the TVO Today website for current affairs journalism, documentaries and podcasts: https://www.tvo.org

Link to report on Black women and fibroids: https://pmc.ncbi.nlm.nih.gov/articles/PMC3874080

Link to report on lack of medical research related to women's health: https://pmc.ncbi.nlm.nih.gov/articles/PMC8812498/

Link to Sunnybrook Hospital's guidance on intravenous iron treatment and typical costs: https://sunnybrook.ca/content/?page=intravenous-iron-therapy#:~:text=Do%20I%20need%20to%20pay,anemia%20did%20not%20get%20better.

Wait times for gynecological surgery in Canada and Ontario: https://healthydebate.ca/2024/01/topic/canadian-women-waiting-gynecologic-surgery/#:~:text=May%20Sanaee%2C%20a%20urogynecologist%20in,that%20also%20requires%20urgent%20attention.

Cost of annual fibroid treatments in the United States: https://pmc.ncbi.nlm.nih.gov/articles/PMC3292655/#:~:text=The%20estimated%20annual%20direct%20costs,$5.9%20to%20$34.4%20billion%20annually.

CBC article on why more women get Alzheimer's than men: https://www.cbc.ca/news/health/alzheimer-women-risks-1.7604574

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(MIS)Treated explores how medicine has – and still is – failing women and speaks to the people looking to make a difference. Join host Nam Kiwanuka to hear real life stories and expert interviews on how the mistreatment and misdiagnosis of women affects us all.

Available September 30, listen to (MIS)Treated, a new TVO Today podcast that debunks the myth that our healthcare is gender neutral. It examines the real-life consequences when women's health care – from birth to death – goes undiagnosed and untreated because women's health is underfunded and under researched.

We cover questions like: Why were women once excluded from clinical trials? Why is it so hard to get diagnosed with endometriosis? What's a fibroid and why don't we talk about them? Why do women represent 80 per cent of autoimmune diseases? What has been the impact of the forced sterilization of Indigenous women? And more. To find out the answers, subscribe wherever you get your podcasts.

Got a question or comment? Email us at: [email protected]

Follow TVO on social: https://www.youtube.com/theagenda https://www.instagram.com/theagendatvo/?hl=en

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