You're listening to Mistreated. I'm Nam Kiwanuka.

Last week's episode, we spoke with actress Andrea Lewis about what it's like to live with polycystic ovarian syndrome or PCOS.

It was an eye-opening conversation, but we wanted to dive even deeper into the research being done on the condition.

We reached out to Dr. Kendall Susi, an associate professor and a researcher at the Health Experiences and Longevity Heel Lab at the University of Windsor.

Her research is centered on speaking with women about their lived experiences with PCOS, not only to gain a better understanding of how the condition presents itself, but how it impacts those with it on a daily basis.

Her work also explores how chronic health conditions affect you across your entire lifespan.

And when it comes to funding, and you may need to sit down for this, in the United States, between 2023 to 2025, the National Institutes of Health funded over 200,000 projects at a price tag of about $124.5 billion.

The amount that PCOS got funding spread out across 19 projects was just $7 million or 0.009% 009% of all funded projects.

And in Canada, in that same time frame, only 11 projects related to PCOS got funding at around $1.3 million.

And in percentage points, that's slightly worse than the US at 0.007%.

Dr. Susi also stresses that very little funding goes towards studying the lived experience of PCOS.

So conversations around its impact on mental health and quality of life are largely ignored and that's why her lab focuses on that.

In our conversation, Dr. Susi also dispels some myths around PCOS.

Can you get pregnant? Is weight gain a sign that you have PCOS? Is there a cure? Can you reverse the symptoms of PCOS?

She answers all those questions and more.

While we've known about PCOS for some 90 years, Dr. Susie says there's still so much to learn about what she says is the most common and most easily misdiagnosed hormonal disorder.

She joins me now.

Kendall Susi, welcome to the podcast.

Hi.

>> Hi. Thank you for having me. I'm excited to be here.

>> I'm really looking forward to our conversation. Kendall, can you let everybody know what it is that you do?

>> Sure. Um so I am um an associate professor at the uh University of Windsor and my research interests are in understanding the lived experiences of polycystic ovary syndrome which is the most common endocrine syndrome in women of reproductive age but it is also highly misdiagnosed.

My research interests are in understanding the lived experiences of polycystic ovary syndrome which is the most common endocrine syndrome in women of reproductive age but it is also highly misdiagnosed.

Um so we try to kind of understand why we see that diagnosis delay um and what the kind of general um experiences are like living with PCOS sort of daytoday

>> um what challenges folks face um and also what sort of possibilities there are in relation to just a better understanding of PCOS.

>> You said that PCOS is highly misdiagnosed. Why is that?

Part of it is historically there have been a lot of different um diagnosis criteria with respect to PCOS.

Um so folks were using just different criteria across the board.

So prevailance rates are sort of um you know all over the place.

There's also heterogeneity in terms of symptom presentation.

So um at this point in the literature there's four phenotypes of of PCOS.

Um so it presents sort of differently in folks.

Um PCOS is also kind of a a misleading name, right?

It's uh PCOS is a multi-system condition, but the focus has really been on kind of the ovary and the gynecological aspects of PCOS, but it's much broader than that.

And so I think that's sort of part of it, the the kind of misleading name.

Um PCOS is also underfunded, under research, has been really neglected um for a really long period of time.

So we're only now learning about um you know the multiple impacts of of PCOS really you know over the lifespan.

>> Uh Kendall, some experts say PCOS quote looks to be at least two or three different conditions that have been just kind of like lumped together and there are calls for it to be separated into two different diagnoses.

Others say the name polycystic ovarian syndrome is misleading and that the name should be changed.

There's also an argument made by an Australian researcher that PCOS quote causes heart disease, it causes diabetes, it causes mental health issues, but it cannot be funded by mental health grants or health or heart disease grants or diabetes grants because polycystic ovarian syndrome is stuck in the gynecology and women's health bucket.

The argument being that PCOS is not just a gynecological condition.

Um Kendall, can you help us to understand why that is?

Yeah, I think that's that's the message that we've been really pushing and a lot of folks have been pushing.

Um is that PCOS is really more than just a gynecological issue.

You touched on some of the coorbidities uh with respect to PCOS.

Um but there are reproductive impacts. There are metabolic impacts like you talked about, you know, type two diabetes, insulin resistance, there are mental health impacts.

um the funding is disproportionately um you know connected to grants that have something to do with really restoring fertility.

So that's kind of been the focus.

So there's been a movement um around really changing the name so that it includes more of that holistic kind of multi-organ multi-system kind of um syndrome and like there's some folks that are really strongly for changing the name.

Um there's some names that have been proposed.

there's a conversation that's kind of starting around just you know encapsulating really kind of that multi-system perspective with PCOS so that folks aren't just you know talking about the ovary they're talking about other kind of impacts of PCOS um however you know there's advocacy groups that have really based you know their entire platform around the name right so around PCOS

um and there's a ton of advocacy work um you know in the PCOS community spaces really internationally

So, I think now we're finally getting movement and and recognition of PCOS and what it means and what the coorbidities are and what the long-term impacts are.

So, it's it's a tricky conversation to change the name when finally like finally we're getting some of that recognition.

So, is now the time?

Um you know again there's there's folks for and against it and there was recently a survey um that was sort of sent out to capture you know participants caregivers healthcare providers researchers perspectives and um folks were quite favorable with respect to changing the name but I think we need to think through it work together as a multi-disiplinary sort of team um and with folks with lived experience to to really ensure that um we're doing this this sort of thoughtfully

um you know and with those perspectives in mind too

>> I imagine some of the trepidation around changing the name is that now you do have that momentum people are talking about it um as someone who's a researcher in this space and as somebody who has PCOS why is it important to center those with lived experience

I imagine some of the trepidation around changing the name is that now you do have that momentum people are talking about it um as someone who's a researcher in this space and as somebody who has PCOS why is it important to center those with lived experience

I imagine some of the trepidation around changing the name is that now you do have that momentum people are talking about it um as someone who's a researcher in this space and as somebody who has PCOS why is it important to center those with lived experience

>> I think it's incredibly important um to to really kind of amplify and like you were saying center folks with lived experience with PCOS um because you you know, so much of PCOS care is really siloed and fragmented is what we've sort of learned.

Um, and really kind of devoid of patient experiences.

And so lived experiences give us opportunity to understand how the syndrome is impacting our lives kind of day-to-day, how treatments um are kind of impacting our own kind of um trying to think of the right word like our own like future risk um of of various coorbidities.

So I think the lived experience piece um and the f the work that we focus on um is more like storytelling based.

We want to hear about folks um their kind of diagnosis journeys and their lived experiences really over their life course.

And we've learned so much from those experiences not only from folks who live with pieces but also caregivers as well um like family members, friends, peers, right?

like those relationships have been really helpful in informing really what it's like to live with PCOS, but also the next stage of research priorities um with respect to PCOS too.

So what is it that patients want? What is it that you know we need? What is it that we're striving for? What are our goals?

Because those goals and those perspectives might be different um you know in important and nuanced ways than uh goals that you know professionals or various stakeholders have with respect to our care.

Do we know what causes PCOS?

>> So, we don't. That's the tricky part.

We don't know what causes PCOS.

Um, there's some theories that have been speculated.

Um, for example, there's a high coorbidity uh among relatives with PCOS.

So, if you have a first-degree relative with PCOS, you're also more likely to have PCOS.

Um there's also conversations around inflammation like inflammatory markers around uh like lifestyle um endocrine related issues or endocrine disruptors um you know just in relation to some of the environmental exposures we um are being exposed to.

Um there's also conversations around inflammation like inflammatory markers around uh like lifestyle um endocrine related issues or endocrine disruptors um you know just in relation to some of the environmental exposures we um are being exposed to.

So um you know but it's likely epigenetic you know in nature.

So a combination of both a genetic risk or genetic propensity and lifestyle um factors and stressors that we're sort of exposed to you know in modern life.

>> Is there a cure?

>> There is not a cure now.

Um actually since PCOS has been kind of identified nearly 90 years ago.

It was first identified by this sort of seminal paper uh by Stein and Lebanthaw 1935.

And in that time per period, I mean we're in 2025 now.

There is still no we have no idea really what causes PCOS.

And there is still like over 90 years later, no cure.

Um there's a a hodgepodge of treatments, but um

>> that was going to be my that was going to be my next question because I my understanding is that there is no one medication to treat PCOS.

Yeah.

Um so there's several medications that can be used to manage symptoms um associated with PCOS which folks will say that it's more of like a band-aid kind of solution.

So uh for example birth control is the first line of treatment um in PCOS care which a lot of folks are you know concerned about.

Um there's also medication uh comforin which is an insulin sensitizer which helps with insulin resistance.

There's some anti-androgen medications.

there's some other treatments around fertility.

So, you're kind of just treating symptoms um and you're not really treating like the underlying kind of causal or mechanistic issue.

>> Um you spoke a little bit about um fertility.

Can you get pregnant if you have PCOS?

>> Yes.

Yeah.

I think that's one of the biggest misconceptions is that you know fertility um you know and that's the focus of been of research for a long time too.

Um but yeah, you can get pregnant with PCOS.

Um, and there's a lot of uh folks like reproductive endocrinologists and OBGYNS who specialize in PCOS that can um, you know, have those conversations with you, but it is 100% possible.

>> But we should also mention that for some people with PCOS, becoming pregnant might not always be the goal.

>> Yes, exactly.

>> Why is it important to mention that?

>> Yeah, it's I think it's it's important because it may not be like you said, it may not be the goal.

um you know a lot of folks talk about um you know other issues that they're concerned about with respect to PCOS.

So it may be fertility um it may be the cardabolic risk factors of PCOS.

So there's concern about you know heart disease or stroke um there's concern about cancer like there's a risk of um endometrial cancer in in folks with PCOS.

Um so you know pregnancy may or may not be your your goal.

Um, but I think having a more of a integrative like holistic perspective with with PCOS because typically folks present with multiple concerns.

It's not always fertility.

Um, also the the one other interesting thing with um with PCOS is folks tend to be diagnosed when they are trying to get pregnant.

Um, so that's kind of the other piece that's sort of interesting.

Um, is when fertility may be a concern or maybe at stake, that's when the referrals and you know that kind of thing come in.

>> How early can PCOS show up though?

>> It shows up pretty early. um typically in adolescence um which is why it's sort of challenging um in terms of the diagnosis is um because there's a lot of conversations around like what does normal puberty you know look like and how long does it take for um you know bodies to kind of get to that point where there's sort of those abnormalities right so typically like in a lot of the data that we collect um you know you're 13 14 15 years of age and you you sort of know that um the symptoms you're experiencing don't feel sort of normal normal for your age or they they feel sort of inconsistent or different from uh your peers for example.

It shows up pretty early. um typically in adolescence um which is why it's sort of challenging um in terms of the diagnosis is um because there's a lot of conversations around like what does normal puberty you know look like and how long does it take for um you know bodies to kind of get to that point where there's sort of those abnormalities right so typically like in a lot of the data that we collect um you know you're 13 14 15 years of age and you you sort of know that um the symptoms you're experiencing don't feel sort of normal normal for your age or they they feel sort of inconsistent or different from uh your peers for example.

So um you know you're 13 14 15 years of age and you you sort of know that um the symptoms you're experiencing don't feel sort of normal normal for your age or they they feel sort of inconsistent or different from uh your peers for example.

Um so it shows up really kind of in adolescence but folks tend to experience really lengthy um diagnosis delay.

So um our data really you know supports the fact that you know folks are going to their physicians when they're in adolescence and um you know are not necessarily receiving that diagnosis until you know 5 10 15 years later.

Um, I want to stay on this a little bit because, um, you know, when you become a certain age, you're anticipating getting your period.

And when you don't get your period, um, maybe you encounter conversations, well, yours is just coming later. You're lucky it's going to come maybe when you're 16, 17, 18.

Why should be why should parents pay attention to that?

>> Yeah, I think it's important to have those conversations.

I think just you know literacy like health literacy around menration around what's what's normal what's not normal um because that's the response you typically get right like you typically get the kind of well you know you're young it'll work out and these symptoms are normal for your age it's just like puberty um you know uh maybe come back in a few years or you know even when you're a bit older you'll get the kind of come back when you want to have kids why worry about it now right those kind of things and and some of the data that we've collected around um like early experiences of PCOS um have really pointed to the importance of like mother daughter conversations and just conversations in general around PCOS and sort of highlighting the fact that having pain for example or a regular periods like not having a period for a very long period of time is really not normal.

I think just you know literacy like health literacy around menration around what's what's normal what's not normal um because that's the response you typically get right like you typically get the kind of well you know you're young it'll work out and these symptoms are normal for your age it's just like puberty um you know uh maybe come back in a few years or you know even when you're a bit older you'll get the kind of come back when you want to have kids why worry about it now right those kind of things and and some of the data that we've collected around um like early experiences of PCOS um have really pointed to the importance of like mother daughter conversations and just conversations in general around PCOS and sort of highlighting the fact that having pain for example or a regular periods like not having a period for a very long period of time is really not normal.

I think just you know literacy like health literacy around menration around what's what's normal what's not normal um because that's the response you typically get right like you typically get the kind of well you know you're young it'll work out and these symptoms are normal for your age it's just like puberty um you know uh maybe come back in a few years or you know even when you're a bit older you'll get the kind of come back when you want to have kids why worry about it now right those kind of things and and some of the data that we've collected around um like early experiences of PCOS um have really pointed to the importance of like mother daughter conversations and just conversations in general around PCOS and sort of highlighting the fact that having pain for example or a regular periods like not having a period for a very long period of time is really not normal.

Um and some of the other sort of symptoms associated with PCOS you know are also not normal.

So having I think just challenging the stigma, right?

And and having conversations about periods and about, you know, um like mood issues and and those kinds of things are really important so that young people can really start to have those, you know, conversations with others, too.

It just sets the stage for again these like fruitful and productive conversations about health that we just historically really weren't having.

Um, I think some people might be surprised to hear that that in 2025 there is still stigma around talking about periods, but Andrea Lewis, who we spoke to last week and she told us her PCOS journey, said that when she first um she never had these conversations when she was younger and when she did get uh diagnosed with PCOS, she didn't really take it seriously because um I guess the way it was presented to her was like, well, as long as you're not trying to get pregnant, you should be okay.

Um, how does that impact people with PCOS when their symptoms are kind of played down?

Um, how does that impact people with PCOS when their symptoms are kind of played down?

>> It's frustrating and it's disappointing and it can be exhausting, especially if you've been going to multiple doctors and you're like kind of clinic hopping and um trying to kind of get an answer for what's going on in your body.

So, that's part of it is sort of like the mental health tool and the kind of burnout and exhaustion around that.

Um, but also we've learned too that, you know, those experiences really kind of hinder folks from wanting to go back, you know, for even preventative stuff.

So, um, it it creates this kind of distrust in a way with with the medical system, especially if you've seen multiple providers and aren't getting anywhere.

And so, you sort of think to yourself, well, I'm just going to go to another, you know, physician who's just going to dismiss me again, and maybe it is all in my head, and maybe there isn't anything wrong with me.

and then you just sort of stop going and you sort of just try to live your life and manage what you can manage um in that moment.

But typically with PCOS it doesn't really, you know, get better sometimes, right?

Like sometimes you do need medication or sometimes you do need that extra support.

Um and so that alienation from the medical community is really profound for folks with with PCOS.

>> Um there is a perception that when you have PCOS, you have trouble losing weight.

Uh Andrew Lewis told us that um PCOS is sometimes called a lazy girl's diagnosis.

Uh implying that if you have PCOS and can't lose weight, you're just being lazy.

Um first, so insulting.

And secondly, is weight an indication that you have PCOS?

>> So um the weight gain associated with PCOS is the result of insulin resistance?

So um you know, it's like our bodies are are almost like working 10 times harder than folks who don't have insulin resistance.

So, it's not your fault.

Um, you know, and and the shame and blame around weight is is one of the intersections that we explore in our work and it's really discouraging um and really frustrating and that point um about the sort of lazy girl thing, right?

Like we challenge that quite a bit.

Um so, I understand that.

Um, but also with PCOS, there's actually a phenotype called lean PCOS that is is highly misdiagnosed because there are women who have PCOS and have some of the symptoms of PCOS but are underweight.

So, um, you know, you kind of end up in in this sort of situation where a lot of folks think that weight is a central feature of PCOS and for some it might be, for some it might not be.

And that's why it's so hard to diagnose sometimes is is because so many folks present so differently um you know with with PCOS.

So weight may or may not be a factor.

Um and that's why we need you know more folks kind of doing research in this space really to understand um you know these issues right like we focus um in our work on like I said weight stigma um and obesity stigma and um how that relates to delayed diagnosis and those kinds of things because physicians sometimes will focus on just the weight loss like we've had you know participants say that oh well you know this physician won't see me or treat me until I lose 5 to 10% of my my body weight kind of thing right and so it's incredibly frustrating and um you know, incredibly unhelpful.

So weight may or may not be a factor. Um and that's why we need you know more folks kind of doing research in this space really to understand um you know these issues right like we focus um in our work on like I said weight stigma um and obesity stigma and um how that relates to delayed diagnosis and those kinds of things because physicians sometimes will focus on just the weight loss like we've had you know participants say that oh well you know this physician won't see me or treat me until I lose 5 to 10% of my my body weight kind of thing right and so it's incredibly frustrating and um you know, incredibly unhelpful.

And so it's incredibly frustrating and um you know, incredibly unhelpful.

And so it's incredibly frustrating and um you know, incredibly unhelpful.

>> Um we almost call this podcast just lose 5 lbs because it seems to be the the solution for a heavy issue that a woman experiences.

Oh, just lose 5 lbs and you'll be fine.

um you in the absence of we were talking a little bit like when you do go to your doctor and your doctor dismisses you or you don't feel heard um inevitably what happens is people end up online and online there's a lot of great information um I will say for firsthand with my fibroid uh experience I found that's where I found the information that my doctor couldn't give me but for PCOS it just seems to be like the wild wild west um a video that I recently saw has over 500k views and this person is saying that you can reverse your PCOS symptoms uh depending on lifestyle changes.

um you in the absence of we were talking a little bit like when you do go to your doctor and your doctor dismisses you or you don't feel heard um inevitably what happens is people end up online and online there's a lot of great information um I will say for firsthand with my fibroid uh experience I found that's where I found the information that my doctor couldn't give me but for PCOS it just seems to be like the wild wild west um a video that I recently saw has over 500k views and this person is saying that you can reverse your PCOS symptoms uh depending on lifestyle changes.

Is that true?

>> I wouldn't say you can reverse PCOS symptoms per se.

I wouldn't say that you can cure PCOS.

I'm hearing a lot of discourse around like, you know, PCOS can be cured.

You can manage symptoms.

It's it's all about symptom management.

Um it's all about, you know, partnerships with healthcare providers.

It's all about trust and finding the right provider who will go down that route with you um and provide you know accurate evidence-based information.

So I think um the social media platforms are helpful because when you do feel disconnected and alienated from the medical community you do Google and you do turn to you know online spaces and there are some spaces that are great that are vetted by medical professionals.

So, Minaj University um has an entire kind of platform um website that has a ton of um evidence-based information for both like providers and also for patients.

So, Minaj University um has an entire kind of platform um website that has a ton of um evidence-based information for both like providers and also for patients.

Um so, there's like infographics, accessible information.

Um but there are some, you know, I don't want to call it like influencer for example, but there are some folks that really do kind of perpetuate misinformation about PCOS.

There's some websites that aren't up to date, that aren't, you know, vetted.

Um and then that really perpetuates the the myths and misconceptions about PCOS.

Um we found in our data that some folks, you know, feel sort of empowered and validated um when they do, you know, go to these spaces because they learn, you know, tips to advocate.

They learn about, you know, different things to ask their doctors or medications to ask for and they sort of enter into the medical space quite informed.

But then other folks feel um almost defeated from um you know being in these communities and they might feel like oh well maybe my PCOS isn't isn't worse enough or isn't bad enough or maybe I'm not doing the right thing and then they unfollow.

So it's it's sort of like you know buyer beawware kind of situation like you want to make sure you're consulting spaces that really are you know evidence-based and really are kind of managed and regularly updated and checked with folks you know in medicine um to make sure and there's there's actually a great one um like Mina University I mentioned but also in Canada there's PCOS together um which is a group out of Alberta that has a lot of information about PCOS there's also PCOS challenge which is incredible and they are an international group that has over 60,000 like you know members that are patients, providers, caregivers, various stakeholders.

So it's it's sort of like you know buyer beawware kind of situation like you want to make sure you're consulting spaces that really are you know evidence-based and really are kind of managed and regularly updated and checked with folks you know in medicine um to make sure and there's there's actually a great one um like Mina University I mentioned but also in Canada there's PCOS together um which is a group out of Alberta that has a lot of information about PCOS there's also PCOS challenge which is incredible and they are an international group that has over 60,000 like you know members that are patients, providers, caregivers, various stakeholders.

So it's it's sort of like you know buyer beawware kind of situation like you want to make sure you're consulting spaces that really are you know evidence-based and really are kind of managed and regularly updated and checked with folks you know in medicine um to make sure and there's there's actually a great one um like Mina University I mentioned but also in Canada there's PCOS together um which is a group out of Alberta that has a lot of information about PCOS there's also PCOS challenge which is incredible and they are an international group that has over 60,000 like you know members that are patients, providers, caregivers, various stakeholders.

And then there's a new group that just popped up that is phenomenal called the seasons collective and they are uh in Toronto and they have uh they're sort of a newer kind of community with that goal of introducing folks to providers and researchers and just building really a community to focus on legislative advocacy in Canada because Canadians have been really underrepresented in PCOS care.

um there's not really many spaces for us to sort of connect and build community together and um the seasons collective and PCs challenge are you know in Alberta as well like are really helping with those platforms and those movements.

>> Um we'll share those resources in the show notes.

Um Kendall last week when we spoke to Andrea Lewis she mentioned that one of her physicians had recommended that she use Ampic.

She said that she actually ended up using um gaining weight from using Ampic.

Um, we're hearing conversations around Ompic maybe being a medication for PCOS.

Um, is that true?

>> Yeah, there's a lot of conversation now, a lot of um, discussions around Ozmpic as a potential treatment for PCOS.

Um, and I think, you know, it's still kind of like a newer um, area like of interest.

And so, you know, but I think it really goes back to like having a conversation um, doing your own research to understand if this is the right approach for you.

Um and and that partnership with your provider I think is crucial to that, right?

And I think having a provider is up to date on um new treatments that are coming out with respect to PCOS is also really helpful.

Ozmpic is being again talked about quite a bit.

Um but it it really, you know, depends on you.

It depends on your needs.

It depends on all other, you know, a lot of other factors as well with respect to PCOS.

But I appreciate you bringing bringing that up because it is, you know, something that's being really talked about and researched um in the medical space. Uh with respect to PCOS, too.

>> How much funding goes into studying PCOS in Canada?

Um I guess compared to other jurisdictions,

>> not much to be honest.

I did a deep dive at one point.

So in terms of the funding um really there's sort of the Canadian Institute for Health Research.

There's the Social Sciences and Humanities Council of Canada CIHR um the first one I mentioned funds more like biomedical stuff around PCOS.

And a few years ago I did sort of a deep dive into the funding kind of stuff with PCOS and it's it's sort of women's health is generally underfunded but with respect to PCOS less than.1% of the research um is devoted within the women's health space to PCOS.

And a few years ago I did sort of a deep dive into the funding kind of stuff with PCOS and it's it's sort of women's health is generally underfunded but with respect to PCOS less than.1% of the research um is devoted within the women's health space to PCOS.

Sorry, can you say that number again?

Can you say that?

>> Yeah, that's okay.

Um, yeah, less than 0.1%.

So, a very small proportion of funding uh within the women's health space goes to PCOS and of that funding of that like less than.1% um the majority of that is devoted to um reproduction, right?

Like like understanding uh follicular development, so the development of the follicles, right?

like um and and very few studies um are looking at the cardio metabolic impacts of PCOS and even fewer studies um are looking at the mental health uh impacts of PCOS.

Um so we've been fortunate to have had funding some funding from the social sciences and humanities research council to understand the lived experiences of PCOS um as really kind of a a gendered full body all-encompassing sort of syndrome.

Um, I'm the director of the Heel Lab.

So, it's the health experiences and longevity lab.

So, we're a team of of women um and and gender diverse folks who are like really trying to uh elevate, you know, the profile of PCOS in Canada.

Um, but it's still a battle.

It's still an uphill battle.

remains severely severely underfunded given the the pervalance rates of say one in eight um folks with ovaries have um PCOS and also with the fact that there are so many coorbidities and 70% of us remain misdiagnosed.

remains severely severely underfunded given the the pervalance rates of say one in eight um folks with ovaries have um PCOS and also with the fact that there are so many coorbidities and 70% of us remain misdiagnosed.

So we need we need folks to invest and come together to fund this this work so we can understand this you know this under you know misunderstood condition um better.

Um I had to repeat that number because it's like a percentage of of a percentage point.

Um which is just kind of like what um you've said that the literature on PCOS is bleak.

Uh one was about how PCOS uh steals your uh femininity.

Um how does that impact what is studied when it comes to PCOS?

Yeah, it's interesting because um when I first started looking into PCOS, I started reading research articles and peer-reviewed articles just, you know, I wondered what we knew about PCOS and what I read was so biomedical like I I was like sifting through just so much like endocrinology and like trying to understand it and I was like, okay, well, where's the social science perspective?

Yeah, it's interesting because um when I first started looking into PCOS, I started reading research articles and peer-reviewed articles just, you know, I wondered what we knew about PCOS and what I read was so biomedical like I I was like sifting through just so much like endocrinology and like trying to understand it and I was like, okay, well, where's the social science perspective?

Like people live with PCOS, right?

Like like where's that perspective?

Um and I looked into the social science literature.

Some of it was in nursing, you know, some of it was in psychology, but very, very little.

It was like a tiny little robust, you know, body of literature, but quite small.

And and it was incredibly negative and incredibly deficit- based.

So, the titles of some of the studies, um, and they were great studies, right?

One was was that PCOS was a thief to womenhood.

One study was, um, you know, it's not feminine to have a mustache.

Another study I remember was I drew the the parts of my body in proportion to how much PCOS ruined them.

Again, they're phenomenal studies and really show the kind of negative impact of PCOS.

But I thought to myself, you know, in meeting with my lab and my students had the same thought.

They're like, well, there's got to be like a counter narrative. There's got to be another side to the story where, you know, folks with PCOS sort of strive or thrive and they cope and they build community and they heal and they come together.

Like what does that side of the story look like, right?

So we wanted to infuse a more strengthbased um approach to understanding PCOS that's really in opposition to the sort of like you know decades of of deficit um based research that's out there and that's what we've been really trying to do.

So we look at constructs like self-compassion, we look at um you know social support, we look at gratitude, we look at um like advocacy and community um as a way to really I think push the field in a direction um that is a bit more positive, you know.

So we look at constructs like self-compassion, we look at um you know social support, we look at gratitude, we look at um like advocacy and community um as a way to really I think push the field in a direction um that is a bit more positive, you know.

>> Um you mentioned the work that you do at Heel Lab at the University of Windsor.

Um you I mentioned you have PCOS.

How has researching it helped you understand it better personally?

I love that question.

Um because you know just I think we've collected over hundreds of narratives and stories um and experiences of women from PCOS that just like fuel me like they nourish me in ways that I can't fully explain.

I mean, I sort of feel part of a larger community of folks who um are just, you know, fighting the fight and advocating and having conversations with people in their circle and some of them are, you know, even having conversations at bigger advocacy events.

I've learned about health literacy, you know, I've learned about just from interdisciplinary conversations, too.

Um, you know, about biomarkers.

I've learned about different facets of PCOS that I feel strongly about and connected to.

I mean, we started um this sort of body of work around like around the strength-based perspectives from, you know, several interviews where folks were really kind of talking about and highlighting just body compassion and how much they love who they are and how they wouldn't change anything.

Um that they've become stronger from um this diagnosis.

And I feel the same way.

I feel like I've, you know, I always said when I um was getting my PhD in in grad school that I wanted to use my PhD to do good things in the world and like that I wanted to, you know, and and I I feel like, you know, that's that's what I've been trying to do.

And I've been trying to really, you know, start this conversation and help contribute to this movement and just, you know, be, I guess, bearing witness to these these experiences that that I feel so privileged to have heard from so many women over, you know, many places in Canada, like many regions and and of many ages and diverse backgrounds.

I'm just sort of, you know, completely and utterly like just in awe um of these experiences.

And I think it shaped me as, you know, for the better in terms of a researcher, but also as a as a teacher, too, right?

So, I'm I'm helping to, you know, spread awareness and educate really the next generation of folks who um might be going through this this diagnosis.

And I feel like honored um to be able to to do that, have these conversations.

You used the word earlier biomed which I guess it's just like it's just focusing on I guess the um clinical part of it and not including the people part of it.

Um do you think it makes a difference if a researcher has that lived experience of a condition when they're studying it?

>> I do.

I think um you know it's interesting because I never really used to say that I had PCOS like when folks would ask me like you know why are you studying PCOS?

Oh, I'm just sort of interested.

Like I had a hard time, I think, grappling with with that identity as both like a patient and a researcher.

Um, but I think that there's a sense of trust.

There's a sense of, you know, camaraderie um and connection when you occupy both of those identities.

You know, when I'm somebody who's a PCOS patient and we're interviewing folks with PCOS, I understand, right?

I understand what they're going through.

I've lived it.

I've lived parts of it.

Um, probably.

And I sort of understand that frustration with the medical system, the frustration with your body.

Um I understand all of those those pieces.

And I think, you know, also listening to folks and listening to their stories, um has really shaped the direction that I want to go in in terms of my research because I want to make sure that I'm constantly honoring the perspectives and and the needs of this population.

So, it works kind of both ways, right?

like I've learned so much about myself and um and I've learned about you know what folks want and what folks need and I'm really you know ensuring that we're prioritizing those lived experiences and anytime I have the opportunity to talk about PCOS or go to an event or you know um just be present like you know in the moment with somebody it's just incredibly fulfilling and incredibly rewarding.

And I'm really you know ensuring that we're prioritizing those lived experiences and anytime I have the opportunity to talk about PCOS or go to an event or you know um just be present like you know in the moment with somebody it's just incredibly fulfilling and incredibly rewarding.

Um, I think the journey from finding out that you have something that your own doctor might not fully understand and then trying to figure out how you are going to live with that condition that doesn't have a cure and you're dismissed when it comes to PCOS.

What are the shortcomings of the health care system?

>> Yeah, I mean I think a lot of it has to do with just really um you know we talk about that lack of awareness and lack of um education with respect to PCOS and and just multiple diagnosis criteria.

I mean you know used by very different providers.

So I think like there's a lot of those systemic issues around just training and education of PCOS and that's why um Manina University some leading experts in PCOS um care put together this international evidence-based guideline um for the assessment and management of PCOS that basically is this consolidated you know guideline that everybody should use.

So I think it helped with that.

There's you know continuing education credits for folks to learn more about PCOS.

I think that's part of it.

I think um you know there's this sort of um I don't know disconnect sometimes um among like just conversations among just different care teams as well.

So women feel like suspended and bounced around.

Um, you know, we've had, you know, patients kind of talk about how, you know, their general practitioner diagnosed with them with PCOS and they were referred to, you know, endo or obgyn and and, you know, were not diagnosed with PCOS and they're like, what am I supposed to do?

And, um, they're bouncing in between or, you know, there's just not really even post-dagnosis information.

So, if you get a diagnosis of PCOS, you're kind of just like, oh, okay, well, what's next?

And, right.

And so, we need to have more of those, you know, multi-disiplinary conversations with each other.

um there's this push toward um you know patient centered care kind of more holistic care you know I think it's also challenging too because physicians have such little time you know with with patients as well like we understand the systemic barriers that are out there too right you have a very short amount of time so we talk about ways in which women um and folks with pest can sort of prepare for appointments and there's resources online uh like question prompt list lists that you know have some examples of questions that you can ask to make sure that the you know the the short amount of time you have is really directed toward you and there's, you know, some conversations around sharing um, you know, provider information like who are the providers in Canada who focus on and and support patients with PCOS.

um there's this push toward um you know patient centered care kind of more holistic care you know I think it's also challenging too because physicians have such little time you know with with patients as well like we understand the systemic barriers that are out there too right you have a very short amount of time so we talk about ways in which women um and folks with pest can sort of prepare for appointments and there's resources online uh like question prompt list lists that you know have some examples of questions that you can ask to make sure that the you know the the short amount of time you have is really directed toward you and there's, you know, some conversations around sharing um, you know, provider information like who are the providers in Canada who focus on and and support patients with PCOS.

um there's this push toward um you know patient centered care kind of more holistic care you know I think it's also challenging too because physicians have such little time you know with with patients as well like we understand the systemic barriers that are out there too right you have a very short amount of time so we talk about ways in which women um and folks with pest can sort of prepare for appointments and there's resources online uh like question prompt list lists that you know have some examples of questions that you can ask to make sure that the you know the the short amount of time you have is really directed toward you and there's, you know, some conversations around sharing um, you know, provider information like who are the providers in Canada who focus on and and support patients with PCOS.

Um, where can we find that information?

Um, you know, we've found in our data nurse practitioners are a phenomenal first line of defense with with PCOS and you can book um, a longer consultation.

So, the intake process um, and gathering that history is a little bit longer with nurse practitioners.

um you know we talk about other forms of kind of um advocacy as well that sort of help but it's a larger systemic issue that really I think folks are working on um you know building those those partnerships and trying to figure out how to improve care um because it's you know it get really getting a quicker diagnosis leads to um a quicker plan right for for your life right like I always say if I was diagnosed earlier it took me five or six years to get a diagnosis um and at the time my blood work was like a complete disaster.

um you know we talk about other forms of kind of um advocacy as well that sort of help but it's a larger systemic issue that really I think folks are working on um you know building those those partnerships and trying to figure out how to improve care um because it's you know it get really getting a quicker diagnosis leads to um a quicker plan right for for your life right like I always say if I was diagnosed earlier it took me five or six years to get a diagnosis um and at the time my blood work was like a complete disaster.

um you know we talk about other forms of kind of um advocacy as well that sort of help but it's a larger systemic issue that really I think folks are working on um you know building those those partnerships and trying to figure out how to improve care um because it's you know it get really getting a quicker diagnosis leads to um a quicker plan right for for your life right like I always say if I was diagnosed earlier it took me five or six years to get a diagnosis um and at the time my blood work was like a complete disaster.

And I think if I was diagnosed much earlier, um and a lot of our participants say the same thing, they would have made different changes and and different, you know, taken kind of different pathways in some ways.

Um got support earlier to sort of prevent some of the elevated risks that they see now, right?

Like things like type 2 diabetes, things like heart disease, things like endometrial cancer.

Um so early intervention is so important which is why the delays are so challenging in diagnosis of of PCOS.

>> Thank you for sharing that about nurse practitioners because I think um there's an understanding that it's uh it's gynecologists who we have to see but with the weight lists it's good to know that information and five to six years to get a diagnosis.

And five to six years to get a diagnosis.

>> I'm so sorry because it's like all those years are are gone right.

Um Kendall uh really learned a lot from this conversation.

Uh enjoyed my time with you.

Is there anything that you'd like to add that I haven't asked?

>> No, I think we covered a lot of ground actually.

I think um we captured a lot of aspects of PCOS and I would just encourage folks to connect with us if they have any questions.

Um can leave my uh contact information.

We're always happy to just connect with folks and have more more conversations and raise more awareness around PCS.

So, thanks for this opportunity um to have me and and for this entire conversation.

It's awesome.

>> Thank you, Kendall.

Thank you.

>> This was Mistreated for November 4th.

You can follow our show on Apple Podcasts so that you can get notified each time a new episode is available.

We would love to hear your feedback.

You can write me an email at mistreatedodcast.org or reach out to me on my social channels.

We'd love to hear your stories and you can send us a voice memo if you'd like to share your story on the podcast.

Here's some feedback we got on YouTube from our episode on PCOS.

I know the feeling of being dismissed by a doctor, especially when it comes to talking about health matters like PCOS or menopause.

It made me feel that I need to learn as much as I can on these matters because who else is going to advocate for me when I don't even know what's going on?

I hope women's health, especially in marginalized and racialized communities, will get the funding and be studied more expansively.

I really appreciate the interview, Andrea Lewis.

Thank you.

And thank you for that comment.

This week's episode was produced by Matthew Omara and me and edited by Colin Kish.

camera work by Max Stussy, digital shorts by Ariana Longley, production support from Jonathan Hallowell and TBO's digital media services team.

Lorie F is the executive producer of digital.

John Ferry is vice president programming and content.

Thanks so much for listening.

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