This week, Joeita interviews Kendall Soucie, director of the HEAL Lab at the University of Windsor, about Polycystic Ovary Syndrome (PCOS).
This week, Joeita interviews Kendall Soucie, director of the HEAL Lab at the University of Windsor, about Polycystic Ovary Syndrome (PCOS).
Highlights
Guest Bio
Dr. Kendall Soucie is an assistant professor of psychology in the applied social psychology department at the University of Windsor. She's also the director of the HEAL Lab, which is the health experience and longevity lab.
Reference:
Health Experiences and Longevity Lab
The Health Experiences and Longevity (HEAL) Lab is directed by Dr. Kendall Soucie in the Department of Psychology at the University of Windsor.
Her research interests lie at the intersection of Clinical Psychology and Health Psychology. She is interested in understanding the psychosocial and institutional determinants of chronic health conditions (e.g., diagnosis experiences, misdiagnoses/errors, illness disclosures, social support, and illness stigma) within women's health. Her focus is on PCOS, the most common, yet misdiagnosed endocrine syndrome in individuals assigned female at birth, but she is also interested in IBD, HS, POTS, and endometriosis, and their impact on quality of life. Dr. Soucie also explores how chronic health conditions impact a person's identity/life story, body image, and relationships with others, across the lifespan. She focuses on aspects of strength, resilience, and healing, and building community in her work, with her most recent set of studies exploring "thriving with PCOS across the lifespan". Her second area of interest lies in understanding how youth contribute to their communities during the transition to adulthood--with foci on youth generativity, prosocial engagement, and environmental justice. Dr. Soucie integrates quantitative (SEM, HLM) and qualitative (life narrative/autobiography, interviews, arts-based methods) approaches to better understand these domains of study.
Monash University PCOS Guideline -
This International evidence-based guideline for the assessment and management of polycystic ovary syndrome (PCOS) is designed to provide clear information to assist shared decision-making and support optimal patient care and better health outcomes for the one in eight women affected by this condition.
It is the culmination of the engagement of over 3,000 health professionals and the work of 100+ multidisciplinary clinical and lived experience experts from six continents and 71 countries internationally.
Joeita Gupta:
I am Joeita Gupta, and this is The Pulse.
In my early 20s, I was diagnosed with polycystic ovarian syndrome. It's a common condition that affects women of reproductive age, and it changes how the ovaries work. The diagnosis came after years of confusion. Being a young woman with an active social life, I just wanted to be normal and to fit in. I didn't realize that I was dealing with a chronic condition that had far-reaching implications. I just wanted it to go away. I was told that I could take birth control pills and carry on at least until I wanted to get pregnant. And since children seemed far in the future, I sailed through my 20s and my early 30s without too many cares. Today, we discuss health equity and polycystic ovarian syndrome. It's time to put your finger on The Pulse.
Hello, and welcome to The Pulse on AMI-audio. I'm Joeita Gupta. I'm not going to lie to you. I'm equal parts glad and equal parts nervous to be talking to you about PCOS and my journey with polycystic ovarian syndrome. I have been very candid about my journey with vision loss and had many people come on to share their experience and their expertise with blindness. And somehow, it's felt easier to talk about blindness and making one's way through the world as a blind person compared to the diagnosis of PCOS, which came in my early 20s and which I am is probably still grappling with many years on.
To help me unspool some of this, and target some of these threads, and talk more about PCOS and what it means for women who have that condition because it is a chronic condition that affects many women in Canada who are of reproductive age, I'm joined by a fantastic guest.
Dr. Kendall Soucie is an assistant professor of psychology in the applied social psychology department at the University of Windsor. She's also the director of the HEAL Lab, which is the health experience and longevity lab. And her research examines the intersections of health and narrative identity, particularly around the diagnosis and management of chronic health conditions within women's health, specifically polycystic ovarian syndrome.
Dr. Soucie, thank you very much for joining me today and helping me unravel some of the mysteries around PCOS. Thanks very much. And how are you?
Kendall Soucie:
Thank you. Thank you for inviting me to be a part of this amazing podcast. I'm so excited to talk to you about PCOS today. I am doing well. And I'm just excited to raise awareness and education around this chronic health condition that is really underrecognized among physicians and also in our communities too.
Joeita Gupta:
In a few words, if it's possible, can you tell us what PCOS actually is? I tried to sort of wrestle with the question in my opening monologue, but I know I haven't done it justice. So if you have a definition for PCOS, would you be willing to share that with us?
Kendall Soucie:
Sure. So PCOS affects one in 10 women. It's the most common endocrine syndrome in women of reproductive age. And it embodies a lot of symptoms that sometimes appear to be in isolation but are connected in a lot of different ways.
So generally, we would talk about PCOS as falling into three symptom clusters. The first is reproductive symptomology. So things like the potential for insulin-related problems leading to problems with the ovaries. We also talk about irregular menstruation or irregular periods, problems with potential fertility, problems with pregnancy.
The second cluster is metabolic-related issues. So things like the potential for type 1 diabetes, like I had mentioned before, insulin issues, high testosterone, those kinds of problems.
And then also we talk about mental health impacts too. Because PCOS also is associated with anxiety, depression, lower quality of life, disordered eating, and there's a lot of research that kind of focuses on the biomedical aspects of PCOS but not so much the psychosocial or the mental health aspects of PCOS, which also need to be taken into consideration.
And I'll also kind of make the point that... Like you mentioned about PCOS being a chronic health condition, it does increase the likelihood of additional comorbidities. So for example, I mentioned the type 2 diabetes connection, but also things like heart disease, cancer, non-alcoholic fatty liver disease, sleep apnea, and host of other comorbidities as well. So it's really important to know what PCOS is, know what the risks are, what those comorbidities are, so that you can be aware of these potential concerns down the road.
Joeita Gupta:
Do you have any idea about what causes PCOS? Is it something in the environment? Is it an inherited condition? Is it a combination? What is it that we know about the cause of this particular illness?
Kendall Soucie:
So there's a lot of research that's sort of pointing more so to sort of the epigenetic potential link with PCOS. So there may be some familial associations with PCOS. So if you have a parent or grandparent who has PCOS, you are more likely to have PCOS. But there's also some environmental work that's focusing on environmental aspects that also increase the sort of propensity for you to maybe develop PCOS later in life, but a lot of that research is really ongoing. And so it's hard to sort of pinpoint a genetic predisposition entirely, but it is something that I'm seeing emerge relatively recently in the literature.
Joeita Gupta:
Do you think that part of the reason there's so much confusion about PCOS, it has to do with the stigma around women's health, particularly around reproductive health?
I had a guest on a few weeks back talking to me about menstrual equity and period equity. And we started talking about how just talking about periods can still be a source of stigma and shame for women. Do you think one of the reasons why we don't know as much as we probably could or should about PCOS comes down to the fact that we're very shy and maybe even ashamed when it comes to talking about women's reproductive health in periods?
Kendall Soucie:
I do. I think that's a really important point. I think the shame, the isolation, the tabooness around talking about not only periods but infertility. And with PCOS, I mean, we had kind of talked a little bit about the symptomology, but because of different hormone distributions, you start to see higher levels of testosterone, which leads to hair growth on the face or on the chest. And so a lot of women in our data will talk about covering up, or hiding, or spending a lot of money concealing or getting laser hair removal to remove that excess hair growth. And they don't want to always talk about it. And so there is that kind of stigma that embarrassment around some of the symptoms.
But there's also, I think this sort of medicine for a really long time was really based on the male body. It's sort of androcentric approach to medicine. And so we don't really know a lot about conditions in women. We only are recently starting to understand cardiovascular disease in women, pain experiences in women. And so the inequity is a larger sort of inequity about understanding women's health conditions. And so, we don't understand pelvic pain. We don't really understand PCOS. So it affects one in 10 women, but it's the most commonly misdiagnosed syndrome because it wasn't really talked about. It wasn't really presented in medical books or those kinds of things.
So I think that there's part of that. But I also think from what you were saying from this sort of stigma point of view, I think a lot of folks are really reticent of bringing it up, and how do I talk about PCOS? How do I broach that conversation? What does that look like, and how is that person going to react?
And I have a student in my research lab. Her name is Noelle. And she's phenomenal. And she's doing research into the disclosure of PCOS. So how do you broach that conversation? What does a supportive reaction look like? What does an unsupportive reaction look like? And folks who haven't really been supportive, do you ever go back to that person again? Probably not. And so it's really looking at how you break that stigma and how you really start to have those conversations, because her data is quite interesting to show that once you open up that conversation, you'd be surprised how many more folks come forward and share their experiences with you.
And you would have no idea that even another family member or a friend you're really close to has PCOS or has a health condition that has symptomology that is similar to PCOS and the level of social support and connection and closeness and intimacy that you can really derive from that experience.
And also understanding your body, just talking to another person. All kinds of things can essentially... I see it as a thread. It's like all these different threads can come together if you understand, and listen, and embrace those conversations and those connections.
Joeita Gupta:
When I think back to my early 20s, when I received the diagnosis for PCOS, I was given to understand that it was primarily something that dealt with reproductive issues. And I was told that if you take the birth control pill, it'll regularize your periods, and that should take care of it. When you want to get pregnant, you can get off the pill. You might need fertility treatments, but cross that bridge when you get to it. But it has been about a decade and a half, maybe a bit more.
And now that I am trying to get pregnant and spending more time understanding PCOS myself, I realize now that there was a lot more to PCOS than simply issues around reproduction or fertility. It affects every aspect of your life as someone who lives with PCOS. Do we need to have different conversations with women when we're offering them this diagnosis or this label about what it actually means to live with PCOS so we don't reduce it to fertility, and reproduction, and having regular periods?
Kendall Soucie:
100%. I completely agree. And that's something that has come out in the literature and our data as well. It's sort of this focus is overwhelming, focus on fertility, on getting pregnant, this sort of one-size-fits-all treatment regimen, like take birth control, come back when you want to get pregnant. I mean, that's what we hear over and over again. And it neglects the other aspects of the syndrome that a lot of folks don't know about. So by almost disproportionately focusing on just fertility and on regulating periods, we miss a lot of other aspects of PCOS. So we miss the metabolic impacts related to metabolic syndrome, insulin problems, glucose dysregulation, the cardiometabolic impacts as well, so we sort of don't have a lot of research on that side of things.
I remember doing this sort of review and looking at the research that has been funded in relation to PCOS, and it's overwhelmingly... I mean, it's very small. It's only less than 1% of the portion of CIHR funding is devoted to women's health. But of that small, tiny percentage with respect to PCOS research, it's all related to pregnancy follicular development, like the development of the follicles. And only one, I think, article or one project I found was related to the cardiovascular impacts of PCOS.
So we're neglecting this whole body of work outside of reproduction fertility. And it's also really showing that it's really fertility that counts when it comes to that literature. But the cardiometabolic stuff, the psychosocial, the mental health impacts of PCOS are really only starting to be studied and to be researched. And it's good to see that movement in that field, but it's also challenging because there's so many aspects of PCOS that a lot of folks just don't know are connected.
I remember when we put out a survey, and we were asking folks about just symptoms they experience. And I remember after the survey, having participants say, "I had no idea that heart disease was something that I needed to watch for," or "I had no idea that I should be screened for sleep apnea," or "I had no idea that I should make sure that these biomarkers are okay because I'm at risk for X, Y, and Z."
And I think even the psychosocial aspects of PCOS, too, on body image, for example, or just the mental health impacts in general, are also something that is only recently being explored. And so I'm starting to see interventions that focus on those aspects, but they're relatively new because you're right that the focus was on fertility for a very, very long period of time. And I can imagine somebody being like 16, 17, 18 and saying, "I don't want to get pregnant right now," or "I'm not thinking about that right now. And what do I need to do now to make sure that I'm healthy in these ways?" And so each person's experiences should be individualized.
I focus a lot on patient-centered care and amplifying the patient experiences because I may have a totally different concern in relation to my symptoms, or I might have a totally different profile with respect to where I'm at in my life and how old I am and what my concerns are then than someone else. And so the one-size-fits-all approach is an issue. The lack of treatment into PCOS is an issue. Why is it just birth control, metformin? Birth control regulates periods, but there's a lot of drawbacks, particularly about being on it for a long period of time too, right?
Joeita Gupta:
And if you don't get pregnant and you're constantly on birth control, I mean, are women adequately counseled about taking birth control pills for the long term, being on birth control for 10, 12, 20 years? Because not everyone who has PCOS intends to discontinue birth control because they want to get pregnant. Not every woman wants to have a kid. But do we know enough about long-term use of birth control pills and contraception and what impacts that might have on the health and wellbeing of a woman?
Kendall Soucie:
Exactly. And we don't. And so in our data... I mean, we had a lot of participants, many of them sort of mentioned, "Well, what happens if I get off birth control? What does normal functioning look like? What'll happen? Well, my symptoms completely explode. Is this a band-aid solution? And what does that look like? And we don't know those long-term impacts." And so there is some discussion around that. And why do we not have unique treatments that are for PCOS? Why is it sort of like a mix-and-match kind of approach, like we're doing this medication for this, and this medication for that symptom, and this medication for the hair growth? And why isn't there this sort of holistic or uniform kind of treatment option? And so it's been challenging. And I completely agree with you. I think that's been one of the concerns that has come up.
And also being, say, put on birth control, but not really being provided with any counsel or any information about the long-term impacts or about what point do I stop or at what point do I come back, and we have this conversation. And so it's really that kind of conversation. Again, it goes back to that patient-centered care and having that autonomy to sort of know whether or not you want to take birth control, for example, right? And yeah, I think that's a really, really important point.
Joeita Gupta:
The other side of this is, of course, now there's a multimillion-dollar wellness industry, and you've got a plethora of treatments. Take this supplement. Take that powder take this potion. And I'm someone who's actually quite... I do believe in many of the naturopathic remedies that are out there. I think taking vitamins and things like that are generally quite useful. But when I stopped taking the birth control pill and I got on to trying to manage this through lifestyle changes, just the sheer number of supplements I had to take and the amount of conflicting information I got about what to take was equally overwhelming. Do you think part of the problem is if a woman who don't or can't, or won't get on birth control pill to manage PCOS, there isn't a clear alternative as to what they can actually do?
Kendall Soucie:
Yeah, I think that's the concern. And we've also noticed this in the data that women with PCOS and just people with PCOS in general, they feel very let down by the medical community. And so, they tend to turn to more naturalistic approaches, which have been for some very helpful. And one of the things that I always thought was interesting is if you have PCOS and you are struggling with insulin problems or glucose dysregulation, why not be referred to, say, a dietician or somebody to sort of help you manage those lifestyle stuff or lifestyle impacts?
But when it comes to naturopathic medicine, that's where we're learning that women find a lot of benefit from. So when it comes to inflammatory markers, taking anti-inflammatory like fish oil or different kind of supplements to help with those concerns, but it's confusing as a consumer. You're navigating that environment. And there's so many options and so many... It goes back to thinking critically of like... and working with somebody to say, "This is the symptom that I'm dealing with. Is this supplement going to help? And are these lifestyle changes going to help? And I definitely think there's potential there, but you're right. It's incredibly overwhelming.
And I think working with somebody that really understands what your goals are and where you want to be is really, really helpful. And it may not be a ton of supplements and vitamins, but it may be just nutritional lifestyle changes that can kind of help you get to that point. But yeah, it's an interesting point. Because I see so many ads and pieces of information that are just being thrown at us all the time. And we have to make those decisions of, "Okay, I'm being let down by the medical community, so if I go the naturopathic route, what does that look like, and how does that work?" And so it can be challenging to navigate for sure.
Joeita Gupta:
I'm tempted to go to the fridge and bring you my big basket of supplements. You'll see. You'll probably get a bit of a laugh out of how many I actually take in a day, but that's besides the point.
Do you think that some of the struggle that women have... And I don't want to just talk about PCOS constantly being a struggle. But do you think part of the struggle that comes from a diagnosis of PCOS is that it really turns... It has been...
I read somewhere on the internet that PCOS was described as robbing women of their womanhood. That it really sort of comes up against these conventional notions of what are women is, or what womanhood is. And I feel like those conventional notions are really tied up with traditional ideas about femininity, beauty, and, of course, fertility. Do you think part of the stress around PCOS is somewhere somehow women are thinking, "Well, I'm not meeting the standard that has been imposed on me?"
Kendall Soucie:
I do. And that's come out quite a bit in our data, the sort of body image femininity concerns. It's also pretty prevalent across the literature.
I remember reading a paper. It was a phenomenal paper. It was back in 2002. And the title of the paper was that PCOS was a thief to womanhood, right? And I read another paper recently in 2019, that was again, another phenomenal paper, but the title was I drew the proportions of my body in relation to how much PCOS had ruined them. So there's this negative connotation that PCOS ruins your body. It steals your femininity. It robs you of so many things. And one of the things that we've tried to do in our lab is to challenge that. It's to sort of, with our interviews, to come up with a counter narrative to that, to say, when it comes to femininity and it comes to all of these body image pieces, let's focus on what PCOS... in a way, what we can do, and how we feel beautiful, and how we feel connected to our bodies in ways that are sort of different.
Because you always sort of see women with PCOS as being positioned in relation to this normative ideal femininity as being thin, hairless, having smooth skin, those kinds of things. And so it's really challenging those notions and really dismantling them because it's something that has come up quite a bit, particularly in our data.
And so we focus on self-compassion. We focus on gratitude, and resilience, and ways that you feel connected to who you are and to your body and what that means for you.
Of course, we understand it under the umbrella of all of those societal pressures that women face, but we're also trying to understand the lived experience of gender diverse folks with PCOS as well, which has become a really amazing avenue to understand PCOS and looking at the trans and non-binary experience of PCOS as well.
And I think some of the stuff that's also come up in our data is some women feel like they're a failure. Like, "Well, what if I can't get pregnant, or what if my husband doesn't want me?" Those kinds of things. It's challenging those conversations.
And there's a lot of misinformation out there in relation to PCOS and pregnancy, too. So we've had physicians say, or just in our data, if you have PCOS, you'll never get pregnant. And that's not true at all. At all. You have the medical community pushing some of this misinformation. You have patients that are holding onto some of that as truth. And the reality is its we need to have some clarity around PCOS.
And there's a new international guideline that just came out in 2023, 2024, by folks at Monash University around the whole diagnosis criteria, PCOS, but also does a really good job of dispelling some of those myths and misperceptions, and throwing statistics in, and sort of saying, "Okay, this is where we are now. And this is an evolving, living kind of document that has a lot of consumer input, that has a lot of just input from a lot of different stakeholders and community members."
But it's pushing out more accurate information. They have a phenomenal website too, that has resources for patients, resources for providers, continuing education credits to make sure that providers are putting out the accurate information and using the most updated diagnostic criteria as well.
So I would love to send to you if you want the links to those places, but they've been great resources for really everyone who's interested in PCOS.
Joeita Gupta:
We talked a lot about diagnosis, and we talked a lot about the healthcare profession, but I would be remiss if I didn't talk to you about the role that parents play in this journey and the role that partners play. Because often, for a young woman, a young girl, someone who's in her teens, the first time you may realize that you don't have the clockwork 28-day cycle and things may not be going the way they're supposed to go, you might be talking to a parent, maybe a mother, or a dad, or somebody else. And later on in life, if you're having discussions about fertility and getting pregnant, you may be in conversation with a partner. So how does one approach a conversation about PCOS with one's loved ones? And if you are either the parent of or the partner of someone living with PCOS, what are some of the things that you can do to support?
Kendall Soucie:
It's a really great question. And it's something that my student, Noelle, is really diving into, which is really cool. I'm really kind of working on this sort of disclosure of PCOS and who people spontaneously disclose to, why they choose to disclose to that person, how they kind of modulate those reactions of that person as well.
But when it comes to parents in particular, it's challenging. And I think one of the things that we've talked about in our lab is sort of some of the mother-daughter relationship kind of things too, that can be a little bit challenging. And sometimes, it's the sort of taboo in a way about talking about menstruation and talking about periods and those kinds of things. So I think having some open, honest, transparent conversations around periods, around how painful they should be, what they should feel like, and so we get these messages of like, "Well, you're a woman. You just have to suck it up. Periods suck, but you shouldn't be in severe pain. You shouldn't be throwing up. You shouldn't be incredibly unable to function during your period." So I think it's having those conversations, breaking down some of those barriers around, being uncomfortable, talking about these things and being supportive, and I think...
We've had parents or participants talk about parents as being really helpful with lifestyle stuff, and even going above and beyond and looking up things and saying, "Oh, look, I found this article on PCOS. Let's read it together. Let's talk about it. Let's have that conversation." Or going to appointments with them and helping advocate and ask questions.
And so when you're young, 16, 17, 18, and you're concerned about the fact that you haven't had a period or you're having periods all the time or you're really struggling, it's being supportive and being an advocate and letting your child in a way partly lead that conversation but also providing that guidance and that support. And I think that's when you're young and trying to make sense and navigate that and figure all that out, having a parent where they are supportive and you are comfortable having those conversations and you're listening, you're actively listening and displaying empathy and showing some... that sort of reciprocity, because what my student, Noelle, learned is it's really that reciprocal, that reciprocity.
So when you approach somebody, and it goes into kind of partners in a second, but you'd be surprised to sort of know that when you start having these conversations, it goes back to the earlier point. Sometimes you'll say, "Oh, my sister, your aunt, also struggled with some of these things. And she, I think, was diagnosed with PCOS before we knew what PCOS was. Or grandmother... And you start to connect all these pieces, and you feel less alone.
And when it comes to partners, it's hard sometimes to have that conversation. And in our data, a lot of it is around infertility and those kinds of concerns. But I was always surprised to see how supportive partners were, how understanding and how nonjudgmental and how helpful they were in making sure that their partner felt heard, and felt supported, and didn't feel uncomfortable talking about these experiences.
One of the things we did notice is women were more uncomfortable talking about it with brothers and with fathers. So with males. They were not always, but they were a little bit more uncomfortable.
Joeita Gupta:
Actually that makes a lot of sense. I can see why.
Kendall Soucie:
And some of it was like, you just don't talk to men about those things, or that's right. But she's opening up, Noelle, a lot of really cool avenues of research around just talking about that conversation. And if you do have a negative experience with one person, you do not go back to that person. That person's sort of like a dead end, and so you'll never go back to that person. So if it's a negative reaction, a judgmental reaction, a non-supportive reaction, an overbearing reaction, those kinds of things, that person is no longer a safe person for you to go and talk about these experiences with, right? But once you open that conversation with a supportive person, there's that reciprocity, and you go back to that person again and again and again, right? And you continue to have these conversations. And they turn into bigger conversations that are even more helpful.
So it's so important to talk about PCOS the people you trust and people who are in your community with you, because it opens up an avenue for lot more beautiful conversations that come after it. And the one thing I will caution though, I really love the social media communities. I think that they're really helpful.
There's a lot of Facebook groups around PCOS, a lot of those Reddit threads, and stuff like that. But it can be a little bit tricky because sometimes there is some misinformation. So we have, like... The Facebook groups are a double-edged sword. They can be very positive, and affirming, and empowering. But at the same time, they can also lead you to feel sort of disconnected. And sometimes, there is misinformation that is being perpetuated.
So just make sure that if you're going to try something, like a new approach or a new supplement, to really vet that information and take the information with a grain of salt until you do your own kind of research or work with your providers and those kinds of things, but...
That's it. I'm so happy you asked that question about disclosure, and the support, and how you sort of navigate that, because it can be quite challenging to do, but it's a really great question.
Joeita Gupta:
Dr. Kendall Soucie, we've got to leave it there. We're pretty much out of time, but I have really enjoyed our conversation. And I want to thank you so much for taking some time out of your day to speak to us about PCOS and helping to demystify this condition that I don't think we know enough about.
Kendall Soucie:
Thank you, Joeita. It was really nice to speak with you today as well. Thanks for having me.
Joeita Gupta:
That was Dr. Kendall Soucie of Windsor University, who is the director of the health experience and longevity lab. We'll make sure to leave a link to the lab and to Dr. Soucie's research in the description, so you can go and check that out yourselves.
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