The Diagnostic Experiences of Women With Polycystic Ovary Syndrome (PCOS) in Ontario,Canada

Abstract

Polycystic ovary syndrome (PCOS) is the most common endocrine syndrome that disproportionally affects women of childbearing age (~8% to 13% of women worldwide). If unmanaged, it can lead to chronic, lifelong complications. Over the past decade, improvements in diagnostic guidelines have not produced an expected reduction in the diagnostic timeframe. We examined the potential reasons underlying this diagnosis delay. Participants first constructed a diagnostic timeline and then charted and reflected on their diagnosis journeys. Through a reflexive thematic analysis, five themes represented the most common diagnostic trajectory: (a) dismissal of adolescents’ early symptoms, (b) negative diagnostic encounters, (c) wariness of treatment options, (d) uncertainty for the future, and (e) self-education and advocacy. Our findings lead us to argue for education of physicians and allied professionals to strengthen patient-centered care delivery to women with a focus on building in training supports that include critically informed, social justice foundations.

Keywords

women’s health chronic illness polycystic ovary syndrome delivery of health care reflexive thematic analysis Ontario Canada

Polycystic ovary syndrome (PCOS) is the most common endocrine condition affecting reproductive-aged women (Wolf et al., 2018). Although prevalence rates vary based on factors such as geographic location and ethnicity, recent estimates suggest that PCOS affects 8% to 13% of women worldwide (Bozdag et al., 2016). In Canada, point estimates suggest that as many as 1.4 million women have PCOS (Lujan et al., 2008). Thus, nearly one in 10 (and as high as one in five) women live with this chronic health condition, which impacts their quality of life.

Women with PCOS experience symptoms that fall into three domains: (a) reproductive, (b) metabolic/endocrine, and (c) psychological/mental health symptoms. Reproductive symptoms include polycystic ovarian morphology, absent or irregular menstruation, and fertility-related concerns (Poleshuck & Woods, 2014; Teede et al., 2010). Elevated testosterone is also a prominent feature of the syndrome, and it is associated with links to hirsutism, oily skin, acne, and alopecia (Teede et al., 2010, 2018). Women with PCOS are at an elevated risk of obesity, insulin-resistance, and other long-term comorbidities (e.g., diabetes, chronic inflammation, sleep apnea, endometrial cancer, and stroke; Chandrasekaran & Sagili, 2018; Palomba et al., 2015). Although the risk of cardiovascular disease is also a concern, the evidence is inconclusive (Osibogun et al., 2019; Scicchitano et al., 2012; Wild et al., 2010). Women with PCOS report higher rates of anxiety, depression, and eating disorders (Farkas et al., 2014; Himelein & Thatcher, 2006), as well as greater dissatisfaction with their bodies (Kitzinger & Willmott, 2002).

PCOS has historically been considered a controversial diagnosis (Boyle & Teede, 2016; Teede et al., 2018). Contention was, in part, due to several areas of ambiguity like heterogeneity in symptom profiles/confusion related to the clinical spectrum of PCOS, variation in the diagnosis criteria implemented between practitioners, and gaps in provider knowledge (Boyle & Teede, 2016; Dokras et al., 2017; Gibson-Helm et al., 2014). Common misconceptions of the syndrome by women with PCOS also persist, further complicating patient–practitioner communications (Kozica et al., 2015).

Sociocultural barriers in women’s health, compounded by a historical lack of diagnostic clarity, have set the stage for widespread misdiagnosis and diagnostic lags. Gibson-Helm et al. (2014) found that, among a sample of women with PCOS in Australia, the median length of time-to-diagnosis was five years and required visits to at least three different health care providers. And, 60% of these women reported a lack of information and education about their diagnosis and its long-term complications. Soucie and colleagues (2019) also found that, among a sample of Canadian women, it took four and a half years and at least four consultations with various providers to reach a conclusive diagnosis. In an international sample of more than 1,300 women, Gibson-Helm and colleagues (2017) observed that one third or more of the women reported two or more years to reach a diagnosis, and more than 50% of women surveyed saw more than two providers before reaching a diagnosis. Women also reported a lack of satisfaction with the diagnosis process, substantial unmet needs, and a lack of clear information about the syndrome and its comorbidities.

Diagnosis lags also negatively impact relationships with providers. Crete and Adamshick (2011) reported themes of physician inattentiveness, dismissal of symptoms, poor comprehensive care, and a general lack of trust in the medical community. These experiences prompted women to seek medical advice from informal sources (e.g., social media). Similarly, Williams et al. (2016) found that communication with practitioners was described as curt, inattentive, rushed, and dismissive. Again, women turned to print media, paid out of pocket to attend health conferences, and consulted online social media platforms for education, advocacy, and social support. Furthermore, Tomlinson and colleagues (2017) conducted 11 focus groups with women about their experiences being diagnosed with PCOS and managing the syndrome in the United Kingdom and found similar themes related to both diminished quality of life and poor-quality physician interactions. Physician interactions included poor empathy, lack of bedside manner, difficulty accessing specialist care, limited information, lack of long-term education from professionals, unsatisfactory treatment, and insufficient advice and/or education.

Our Contribution

Our goal was to specifically target the mechanisms underlying this diagnostic lag, which we suspected may have been related to patient–practitioner interactions. We sought to explore the diagnosis experiences of women with PCOS in Ontario, Canada, to better understand two overarching research questions:

Research Question 1 (RQ1): What do women’s narratives reveal about barriers and facilitators of care, especially from a critical feminist perspective?

Research Question 2 (RQ2): How can these understandings influence practice and policy-based recommendations for more inclusive standards of care in Canada?

Positioning Ourselves

We position our research within a social-constructionist critical feminist approach to gain knowledge. Social constructionists posit that multiple truths exist and are located in time and place and also that discursive practices (i.e., language as a form of meaning-making) are the predominant mode of inquiry (Burr, 1995). A feminist approach asks questions that disrupt the status quo to enact social and cultural change with the recognition that women’s experiences are valuable in their own right and do not exist in opposition to men (Harding, 1987). Indeed, creating space for women’s narratives is a feminist priority. A critical feminist approach argues that interlocking systems (e.g., gender, class), grounded in context, are (re)produced in society through asymmetrical power relations that position women’s experiences in the periphery (Brabeck, 1996, 1989; Hare-Mustin & Marecek, 1990). This also includes access to health care providers, medical treatments, and involvement in medical decision-making surrounding their own bodies.

Our research methodology aligns with the tenants of the feminist research methodology described by Cook and Fonow (1986), namely the need to constantly (and reflexively) account for the significance of gender in women’s lives and, in research, the need to challenge “objectivity” between the researcher(s) and the subject(s) of the research, as well as a focus on fostering women’s empowerment. It was important for us to have women address their experiences in their own way, through their own language, perspectives, and voices. This approach also supports institutional change through prevention efforts, education, practice, and policy recommendations (Beetham & Demetriades, 2007).

Method

Participants

After receiving ethics approval from the University of Windsor’s research ethics board (REB# 34212), we advertised the study as an inquiry into Canadian women’s diagnosis experiences with PCOS. To participate, women were required to have a PCOS diagnosis from a Canadian practitioner. We placed flyers in our university’s participant pool (n = 12) and in the local newspaper (n = 50). Participants ranged in age from 18 to 47 years (N = 62, M_age = 28.10 years, SD = 7.49 years) and their time-to-diagnosis ranged from 0 to 396 months (M = 52.06 months, SD = 67.31 months). Self-reported ethnicity was 82% White, 6.5% Middle Eastern, 1.5% South Asian, and 10% mixed race. Almost all (97%) had finished some postsecondary education. Women saw an average of four practitioners (SD = 2.55), and of the 252 total doctors seen by our participants, 55% (n = 139) were men and 45% (n = 113) were women.

Procedure

This study involved three components: (a) a brainstorming activity that required the construction of a diagnosis timeline to assist in recalling specific dates and events that occurred throughout their diagnosis trajectory; (b) a diagnosis narrative pieced together from events within their timeline, and then freely told to an interviewer in an unstructured format (though the interviewer asked follow-up questions to capture aspects of self-reflection); and (c) a brief survey to collect demographic and other diagnosis-related information (e.g., time-to-diagnosis, total number of practitioners they saw, their genders). Data collection occurred between November 2017 and April 2018. Participants were not required to do any preparatory work for the interview, and all interviews were conducted in a single session in a private research space on campus or on Skype (for participants unable to come to campus). Participants provided consent to participate and for the use of anonymous quotations in publications or reports. Before starting all in-person interviews, the interviewer read through the consent form with the participant and answered any outstanding questions. For Skype interviews, a research assistant emailed the consent forms to participants 24 hours in advance. Participants signed, scanned, and re-sent e-copies of their consent forms to a secured study email before their interview. All hard copies of consent forms were stored in a secure laboratory in Kendall Soucie’s locked and protected research space.

Diagnosis timeline

Participants first constructed a diagnosis timeline, which involved freely documenting experiences pre-, during, and post-diagnosis (e.g., early symptoms, symptom changes, memorable events) on a paper template. Skype participants had their timelines sent to them by email or in the Skype chat box, depending on their preference, and they completed them at the start of the interview. They sent them back once the interview was complete.

Diagnosis narrative and survey

Using their constructed timeline as a guide, participants were then asked to tell their diagnosis journey to the interviewer. This narrative elicitation was unstructured, and follow-up elaboration questions were asked when necessary. Afterward, we asked participants to reflect on their experience holistically through a semi-structured interview in which we asked questions such as whether participants had changed as a person throughout this process and how their thoughts about the medical system may or may not have changed over time (see the supplemental file for the interview guide). Once completed, participants then went to a laboratory computer in an adjacent room (if in-person) or clicked on a Qualtrics link (if online) and completed a brief survey. Participants were compensated with an additional 1.5% in course credit (university students) or $20 (cash for in-person and Amazon e-gift card for online participants). All interviews were transcribed verbatim by Tanja Samardzic and an undergraduate student and checked for accuracy by Tanja Samardzic and Kendall Soucie. Each interview was identified by a unique identifier code, and all identifying information (e.g., names of close others, health care providers) was removed from the transcripts.

Our research team consisted of a faculty member in child clinical psychology (PCOS-diagnosed), two PhD students in applied social psychology (one PCOS-diagnosed), an MSW student, a third-year neuroscience student, two third-year honors psychology students, and an MA student in global health. These students served as interviewers and assisted with data analysis and interpretation. The student in global health maintained detailed descriptive analytical notes throughout our coding discussions so that we could maintain an audit trail of coding decisions. We benefited from having a diverse, interdisciplinary team because we were able to draw on a variety of perspectives, which enriched the analysis.

Data Analysis Approach

We used Braun and Clarke’s (2019) reflexive thematic analysis (RTA) framework as an analytic guide for this study. RTA builds upon the Braun and Clarke (2006) framework and is a method of systematically identifying, organizing, and capturing patterns of meaning across narratives. Braun and Clarke recommend a six-phase, iterative approach to conducting thematic analysis: becoming familiar with the data, generating initial codes, searching for latent themes based on clusters of conceptually similar manifest codes, revising themes and determining a prototypical label for the themes, and producing a report that identifies theme interconnections.

In the first analytic phase, we collated the transcribed narratives in a Word document. We collectively familiarized ourselves with each transcript by (re)reading all of the interviews holistically in one batch, noting initial observations and reactions to the content. Each author completed this independently, though our team met weekly to discuss our reflections. We stayed as close to the data as possible through line-by-line coding using the left-sided column of each transcript. We bracketed segments of meaning units into chunks, which represented categories of singular meaning units. Many of these meaning units were captured by several sentences or short paragraphs.

During the second phase, we generated initial codes on the right-sided column of the transcript, which represented the essence of the meaning unit that was previously captured. In the third and fourth phases, we integrated codes based on conceptual similarity and then located latent themes in an attempt to capture underlying meaning. Each theme was defined by a central organizing concept that clustered several related and overlapping codes into meaningful units. At each stage, the codes and themes were constantly compared by cross-checking back to the narratives to ensure that the themes matched the data and were re-worked when necessary, which is consistent with stage five.

We maintained reflexivity throughout by keeping an audit trail of decisions made during each stage, meeting, and the final project write-up. We each kept journals and wrote about our own assumptions regarding our own diagnostic experiences (for those with PCOS) and medical encounters. We did not bracket (suspend) these experiences, but rather acknowledged and discussed them routinely. We designated a notetaker to ensure documentation and adequate representation of perspectives. As we coded, we continued to document our decisions and collectively discussed potential coding disagreements. Tanja Samardzic documented these disagreements and our decisions as we continued to reach consensus regarding our more latent (abstract) themes.

Results

Five major themes were generated through our active engagement with the data related to the typical diagnosis trajectory: (a) dismissal of adolescents’ early symptoms, (b) negative diagnostic encounters, (c) wariness of treatment options, (d) uncertainty for the future, and (e) self-education and advocacy.

Theme 1: Dismissal of Adolescents’ Early Symptoms

(“he just brushed it off”)

Participants reported first clues: irregular periods (“few and far between”), weight changes, acne, hair growth pattern changes, and persistent mental health concerns. These symptoms were reported as “debilitating,” “dehumanizing,” and “confusing,” and led to feeling abnormal compared with their peers. One woman emulated the thoughts of many of the women we interviewed by saying she felt “just like, not normal. I didn’t feel like the other girls in my grade . . . I didn’t even feel like, very womanly . . . ”

Another woman articulated that “my cramps were really bad. I would bleed so heavily, and I would have cramping so I would miss school and I would throw up sometimes . . . it was . . . miserable for me.” A third woman recounted that “my first period was in grade 7 or 8, and I didn’t have another one for six months. My family doctor said not to worry about it, but I didn’t get another period until high school.”

One participant recounted her upsetting experience:

When I was 13 or 14, I started getting really irregular, and I’d get really crazy cystic acne. I would have really crazy mood swings, like really depressed or, almost like it was bipolar. And I knew I wasn’t bipolar . . . But it was to a point where I couldn’t take a hold on my moods.

Another participant said the following:

I got really chubby as a kid, my hair’s always been thin, I had bad acne, I always had really weird periods . . . And it wasn’t until I turned 20 that I started growing facial hair. I was already chubby. I didn’t wanna get made fun of more.

One woman recollected that she felt “like emotionally, like psychologically, like [she] wasn’t balanced out.” This participant’s experience was similar:

I know I’m not sick, but I know my body’s not performing like it’s supposed to and that wears on you a lot . . . I felt really gross, too. That PMS feeling where you’re constantly feeling like your period’s gonna come . . .

When seeking medical care, these early concerns were “dismissed,” “not taken seriously” enough to warrant referral or did not “represent the typical profile of PCOS.” Others reported their physician referred to them as a “late bloomer.” One woman stated the following: “My pediatrician said that these symptoms were normal for my age, and they would work themselves out.” Others reported that their physicians told them they “will grow out of it” or to “come back when you want to have kids.”

One of our participants recalled a curt conversation with her physician: “don’t worry about it, since you are so young. You’re not trying to get pregnant right now, so why worry about it.” Other participants said the following: “doctors only care if you want to have kids,” and “you are not taken seriously until it completely impedes your life or you want to have kids,” with general practitioners and specialists “making it all about fertility.”

Theme 2: Negative Diagnostic Encounters

(“I got used to being treated poorly”)

Upon seeking further care for exacerbating symptoms, participants overwhelmingly reported negative experiences with health care professionals. When recounting these experiences, women explicitly used terms such as “lacking in bedside manner and empathy,” “cold,” “callous,” “rude,” “belittling,” “insensitive,” “mechanical,” “pushy,” “forceful,” and “abrasive.” Multiple women we interviewed reported that many male physicians they saw were unfamiliar with women’s health issues. One woman recalls experiencing “a long wait list to see [the specialist], and he was an hour drive away, and he was in and out and the appointment was 10 minutes long. He didn’t address my symptoms.” Another woman’s reproductive endocrinologist lacked empathy, compassion, and understanding:

He didn’t even look at me and he said, “you probably have PCOS.” It was like “yeah you’re gonna wanna watch your weight. You’re gonna wanna cut out all your carbs . . . and this is the medicine you’ll need to take . . . ” It was really kind of cold.

Participants were blamed for their symptoms: “It was more of the same, another male physician saying, ‘you just have to lose weight and things should get better on their own’ kind of thing.” One participant articulated these same sentiments “. . . my family doctor treated me like it was my fault, that I caused this or that I was doing something wrong . . .” Another participant expressed that “he insisted my weight gain was from a poor diet.” To address these concerns, one participant went on the Mediterranean meal plan “. . . which is low fats, good fats, lots of fiber, fruits, vegetables, protein . . .” and another went on a carbohydrate-restricted diet. A third participant had tried many weight-loss programs and experienced negative consequences as a result. She said, “I did Weight Watchers three times . . . I enrolled in Herbal Magic and dropped 45lbs in six months, but it cost me about $2000 to do . . .” Most alarming was a participant who revealed the following: “I went through trying to starve myself . . .”

Other physicians argued that symptoms were from other factors (e.g., age, ethnicity):

I remember him just kind of looking at me and was like “Well, you’re very young still, you’re 15, so I don’t think anything’s wrong with you. You’re OK.” . . . I just assumed, this is a doctor, he is a medical professional . . . what do I know about it? I’m a 15-year-old girl.

One of our participant’s doctors also blamed her ethnicity for her hair growth: “He told me, ‘Oh you have excess body hair? What nationality are you?’ I told him ‘I’m Italian’ and he just said, ‘That’s common with that ethnic origin’.” Another participant’s doctor shamed her for her weight, saying if/when she has children, “. . . you’re gonna be a whale . . . You have to start losing weight.” A third participant said that “he blamed my symptoms on a combination of school stress and low iron.”

Others were referred to obstetricians/gynecologists (OBGYNs) for “unexplained fertility issues” in young adulthood, which revealed an unexpected diagnosis of PCOS. Some were told they would never conceive, and of those who did conceive, they expressed that “a lot of work went into getting pregnant” and reported that it was difficult “getting and staying pregnant” with references to miscarriages (e.g., “it was hard going through so much loss”), and/or risky or difficult pregnancies. However, fertility issues were the impetus behind investigative testing.

One of the women (discussing pregnancy/fertility concerns) expressed the following:

I felt like my doctor was just brushing me off. After I had mentioned to her that I wanted to have a baby, that’s when I feel like she started to take me more seriously not in regards to my symptoms, just in regards to I wasn’t getting pregnant.

After receiving a diagnosis, participants recalled a lack of access to comprehensive information about long-term management. They were told that “you have PCOS, that’s it.” The consensus was that there was a “lack of care and time devoted to explaining the diagnosis,” with limited post-diagnostic information. Pamphlets were the most common resource packet provided by medical offices. Participants reported a “lack of middle group between accessible and inaccessible information for laypersons,” that they were “not informed as a patient,” or “[the] dosages of my medications were increased without explanation.” One participant said that “[my doctor] was angry when I brought my own information with me to the consultation, but I was frustrated not having any answers.”

To gain more information, participants self-advocated for specialist referrals but were mostly unsuccessful. Participants expressed that their physicians “were hesitant to refer [them],” “expressed resistance to refer, despite not knowing what PCOS was,” or “were skeptical about PCOS.” Others reported their physicians were “offended when referral was broached.” When referred, the discussion was contentious. One woman reported that “[her] family doctor disputed the specialist, and both gave [her] opposing advice about which medications to take.” Other participants reported that their specialists re-did tests and wanted to start “from square one.” It is not surprising, then, that two thirds of the women in our sample reported feeling defeated, hopeless, and broken throughout this process. They also reported feeling alone, embarrassed, overwhelmed, expressed feelings of failure and inadequacy, and reported an aversion to medical professionals entirely.

A small minority of women, however, reported positive experiences, many of which involved being treated by female medical providers. Practitioners who were most helpful were those who were not only knowledgeable about women’s health issues in general (and PCOS specifically) but also supportive, kind, nonjudgmental, thorough, and provided space for an open dialogue. They also explained each step of the testing process and informed women on how to manage PCOS, rather than focusing on one symptom (e.g., weight). Dialogues were not only validating but also informed and led by the women. Participants reported that their physicians “listened and validated [their] experiences and the concerns [they] had” and provided care that should be standard care but was reported as “above the call of duty.” One of our participants articulated this sentiment:

I went in one day; she came in and she goes “OK I’ve figured it out” and I was just “what are you talking about?” And she said, “you have Polycystic Ovarian Syndrome” so she explained to me and she was like “it explains so many things about you.”

One participant reported that “. . . [my male physician] was really helpful . . . he told me that PCOS affects women’s hormones and can cause cysts on their ovaries, so investigative testing is necessary to detect the signs.” Another participant stated that “I was given a thorough explanation of PCOS and its risks.” A third participant highlighted that her endocrinologist “. . . seemed to be very knowledgeable. She knew what [PCOS] was.” Another one of our participants spoke about her preference toward a female specialist: “having that female doctor was really reassuring. I think that’s what really helped me . . .”

One of the women, who was being treated by a nurse practitioner specializing in women’s health conditions, described her experience as follows:

She felt that she wasn’t adequately educated enough about [PCOS] to either kind of make a diagnosis or talk to me about it. She felt it was out of her scope of practice, and so she’s like “I want you to get the best information that you can, so I’m gonna refer you on.”

Recognizing that she was not qualified while validating the participant’s experiences reflected her empathy and dedication to ensuring that the participant received the care to which she was entitled. This prevented the possibility for misdiagnosis and gatekeeping and ensured that the participant was sent to an appropriate professional. Another participant said, “my family doctor is so thorough and checks in often and was compassionate throughout the diagnosis process.” Yet another participant expressed gratitude to her physician, as he “held [her] hand during surgery and called [her] at home to check in.” Participants also reported preferences for female doctors in women’s health or reproductive medicine who had knowledge of PCOS, and with whom they felt at ease disclosing uncomfortable symptoms (e.g., irregular menstruation).

Theme 3: Wariness of Treatment Options

(“birth control was his big answer”)

Nearly all of the women who experienced early symptom concerns were first prescribed birth control as a “one-size-fits-all solution.” This type of treatment was presented as the only option, and without proper education regarding symptoms, side effects, and potential complications. One woman said her specialist “. . . put me on birth control and that was his big answer . . . he said everything would go away with birth control.” Another woman’s physician said that “. . . the best way to treat [PCOS] is with birth control . . .” Similarly, another participant expressed “I went to the doctor for [late periods], and of course, they did the normal ‘take birth control, have fun with it’.” Birth control “masked [their] symptoms,” and they experienced side effects, as well as contraindications with other medications that made compliance difficult. Participants reported switching birth control multiple times because they never felt healthy and experienced “a lack of balance.”

Others questioned whether birth control was safe, and what “natural functioning” would look like after medication cessation. One of our participants recounted going off birth control: “I figured I’d give my body a break and that was a really bad idea because all these symptoms that were being controlled by the birth control kind of exploded.” Another was told her periods would be regulated on birth control and that did not happen: “ . . . that [didn’t] seem normal, so I stopped taking it.” Others reported that the purpose was unclear, and that their physician increased their dosage without explanation. Participants also reported a need for preventive rather than reparative management.

Women reported that their doctors also prescribed a diabetic medication, and a fertility medication, but they noted similar concerns around side effects, cessation practices, and potential complications. Mental health concerns were also rarely broached by practitioners. One woman recalled that the first doctor she saw in university discounted her anxiety: “. . . he treated it like it was nothing.” Another woman also recounted as follows: “My doctor didn’t take my mental health into account.” A third woman stated as follows:

Most doctors don’t really have a lot of knowledge [about mental health]—I feel like they need to stress lifestyle management and stress management more. And if they don’t know, they should refer you a lot quicker because that’s now 5 years from point of diagnosis to today, when I got information. It’s too long.

Theme 4: Uncertainty About the Future

(“he made it sound like a death sentence”)

Despite best efforts, participants expressed fears for the future. These concerns centered around possible health concerns (e.g., diabetes, heart disease, and cancer) and expressed the need for constant bodily vigilance. Others discussed their fears regarding fertility/pregnancy, the transmission of PCOS to their [future] children, and the potential that their physicians might be missing crucial information about their PCOS. One of our participants worried about “the whole weight loss thing. It’s still a constant struggle.” Another participant expressed concern regarding diabetes and heart disease: “I worry about developing diabetes because of the insulin resistance, I worry about [my] cardiovascular health . . . those are long term things that I could end up developing.”

Others were concerned that their family histories could exacerbate PCOS symptoms. One of the women recounts that “my grandparents had a background with diabetes and blood pressure. Women with PCOS have a higher likelihood of getting those symptoms to begin with. So, my health is definitely a huge concern.” Similarly, another woman said that she “has a family history of heart disease, high cholesterol, and other things that PCOS might worsen. [She is] concerned about that. [She] wants to manage everything so [she] can live a longer, fulfilling life.”

Participants also shared concerns around fertility. One participant said as follows:

[I] always wanted to have a big family. When I found out this was a form of infertility, I felt crushed, because if I can have a kid, I probably won’t be able to have multiple. It will likely be difficult, expensive.

One woman said, “. . . if I decide to have kids, I’m not going to be having biological children . . . it affects me physically in terms of weight, heart conditions.” A second woman worried as follows: “. . . am I gonna be able to have kids if I want them later?” A third woman spoke of an additional concern: “I have not been able to get pregnant, it’s been 3 years, so I worry about that and how that will affect what I have planned for.”

Others feared that they would pass PCOS onto their children: “One of the things I’ve been worrying about . . . whether I may affect my child by having a baby with PCOS, if there’s any kind of genetic link.” Another participant said, “I’ve got one girl sitting next to me and one more coming soon, and knowing they’re going to have it to some extent, knowing that’s in the future for them, having to explain it to them.” One woman also said, “My biggest concern is if we go to have children, will I pass it on? Probably.”

Others express concerns about physicians missing important aspects of PCOS. An extreme example comes from the following participant: “I told [my doctor] what was going on and she suspected PCOS but didn’t explain it very well. She basically made me think that I had cancer and was going to die.” By not receiving information in the face of this unknown (to her) disorder, the participant prepared for the worst and began to compare her diagnosis with that of a cancer diagnosis. Many had to instead figure out how to reconcile these fears: “I wonder what’s going to change as I get older, what other symptoms do I not know about that are going to rear their head?” One of our participants worried “that it’s going to get worse; that medication will stop working and I’ll need something stronger, but I won’t be able to get it because my doctor doesn’t know enough about it.” Another also said the following: “I’m 21 now and in relatively good health, but what’s going to happen when I am 50? A lot of women in my family have died from cancer . . . so am I a ticking time bomb?”

Theme 5: Self-Education and Advocacy

(“I made it my mission to learn all I could and educate others”)

Because women were not given thorough explanations about the progression and management of PCOS from their physicians, they turned to the Internet for answers. This was a way to gain control of the syndrome and accrue knowledge. One woman said, “I was trying to look up my symptoms online and go into the doctor’s office with some sense of direction because they really didn’t spend a lot of time with you . . . They wouldn’t listen.”

One of our participants expressed how disheartened she was about the way she was treated as a patient within the health care system: “I felt let down by the medical profession because there were no answers. I had to go and find it myself.” Another woman said the following about finding our study on Facebook: “So, I was looking up online, doing Google searches . . . I was on Facebook one day, and I see . . . PCOS study. And I click on the article and I’m like ‘holy *bleep*. This is what I’m going through’.” A third participant said that she has tried using the online realm to share information with others: “. . . nobody’s talked about PCOS, like, at all. So, when I see things online, I know it’s not much, but I do share them online . . .” Other women accessed the limited support communities available for Canadian women (e.g., Canada-specific Facebook groups).

Unfortunately, not all of the women’s online support experiences were positive. One of our participants said the following about a popular Canadian PCOS support group: “It was too brutal for me. Depressing. I get that a lot of people have it worse than me, it wasn’t a positive group. So, I unfollowed.” Online platforms are certainly areas for support, but the women in our study illustrated that they can also foster comparison with others, both in terms of body image and personal experiences and can be unnecessary sources of frustration.

Our participants also wanted to share what they knew with others in an effort to increase PCOS awareness. Some did it on a smaller scale: “In my own little world, I advocate for it. And if I find something, I share it just in case there’s anyone who doesn’t know about it and might have the same symptoms.” One woman found that “. . . when I told most of my friends and my boyfriend, they didn’t know what it was at all. So, I sort of gave them, like, the quick and dirty version . . .”

Others promoted PCOS awareness on a larger scale:

I was sharing a lot of my meals and recipes on Instagram. I’m a big promoter in talking about it because that’s the only way that a lot of people will fight for their own doctors to give them what they want and I’m a big encourager of “keep pushing!”

Discussion

Our study adds to the nascent literature on women’s diagnostic experiences with PCOS throughout their lives. We documented how women constructed their diagnosis experiences from their own perspectives within broader sociopolitical discourses. Five themes characterized the typical diagnosis trajectory: (a) dismissal of adolescents’ early symptoms, (b) negative diagnostic encounters, (c) wariness of treatment options, (d) uncertainty for the future, and (e) self-education and advocacy. These themes echo concerns in the literature from samples outside of Canada and point to the ubiquity of these experiences in medical settings (e.g., Chung et al., 2013; Gibson-Helm et al., 2014; Tomlinson et al., 2017). However, our findings provide novel insight into how patient–practitioner communications reflect a major obstacle to receiving a diagnosis and care plan. Communications were dismissive, judgmental, and curt, and there were limited opportunities for fruitful dialogue. Gatekeeping, conflicting advice, and disagreements among physicians were also major concerns that curtailed the diagnosis process. These experiences led to anxiety about the future, in terms of potential comorbidities, how the syndrome might progress over time, and the transmission of PCOS to children. Consequently, women turned toward social media (and away from medical institutions) for information about the syndrome, and for support needs.

It is important to frame these findings within a sociocultural context in which women and women’s health care face multiple systemic barriers (Weedon, 1987). A critical feminist lens provided insight into the broader social and cultural systems and medical discourses that support these negative interactions (Clarke et al., 2008; Shildrick, 1997). The pattern of discounting patient–practitioner interactions, which often began in adolescence, are consistent with a patriarchal worldview where women have historically had their health concerns dismissed as “women’s issues” and attributed to feminine fragility (Ussher, 2011). Physicians’ reluctance to take women’s concerns seriously (Franklin et al., 2019) unless fertility was at stake again stems from a worldview in which women’s value is limited to motherhood. Our data also showed that women’s experiences were more likely to be predominately negative when being treated by a male physician as compared with a female physician or allied professional (e.g., nurse practitioner) who had some knowledge and/or expertise in women’s health (Bottorff et al., 2012). According to the Canadian Institute for Health Information (2019), 62% of Canadian physicians in 2017 were men, as were 55% of family physicians, and 64% of specialists. Thus, men comprise a sizable portion of the Canadian health care system, which has implications for the process by which they diagnose and treat PCOS, an inherently feminine disorder.

Despite the relief of receiving a diagnosis after years of searching, many women reported limited treatment options without adequate education about side effects, long-term concerns, and/or cessation practices. They also were somewhat resistant to the idea of oral contraceptives, seeing their effects as merely “masking” symptoms. This aligns with feminist criticisms of bodily control and reflects a reclaiming of bodily autonomy (Carson, 2017). However, this could be perceived as noncompliance within a medical context. Bazarganipour and colleagues (2017) noted that low rates of compliance and nonadherence to medications can occur for several reasons, including intolerance to side effects, concerns around prolonged use, and lack of education/information.

Social media sites were the most popular avenues to accrue knowledge, which is consistent with past research (e.g., Bell, 2014; Reisner et al., 2018; Williams et al., 2016). Some women reported heightened anxiety after visiting these websites, and the validity of the content of these sites may be questionable (Chiu et al., 2018). To combat misinformation, websites that provide legitimate sources of information about PCOS are crucial. There exists resources¹ that were developed to accompany the international evidence-based guidelines for PCOS and the AskPCOS App (Xie et al., 2018), so to assist women with informational needs and empower them to seek more from their health care practitioners. One interesting finding in our study was that women engaged in their own degree of advocacy to increase PCOS awareness (e.g., with friends and family members, and via simple actions such as recipe sharing on social media).

Limitations and Future Directions

While this study includes the voices of women who have been unacknowledged, spending many years navigating the Canadian health care system, it is not without limitations. Most of the women in our sample were White women in their mid-to-late 30s residing in Southwestern Ontario, many of whom were likely middle class. This affords the possibility for better access to health care services and greater success in advocating for their care than women in marginalized social positions. It is therefore crucial for future researchers to investigate these experiences with more diverse samples, using qualitative and/or mixed methods (Mendlinger & Cwikel, 2008). This is especially the case in Canada, where 22% of the population are immigrants (Statistics Canada, 2016).

Although we advertised widely, our sample comprised women who responded to our advertisement, and who were willing to discuss their diagnosis. This self-selected sample may reflect more negative attitudes toward health care providers. We also did not exclude participants with other comorbidities (e.g., obesity), which may have influenced relationships with providers. In addition, diagnosis timelines were based on retrospective reports, which are subject to memory biases. Because we focused on the length of time-to-diagnosis and did not ask women to report on how long it had been since their diagnosis, recall distortions may have occurred. Other factors (e.g., changes in health care providers, settings, policies) over time may have biased participants’ reports. Future researchers should isolate the diagnosis timeline timing (e.g., to six months) to prevent potential recall biases. Similarly, while younger participants (18–24 years of age) reported quicker diagnosis timelines, as would be expected, we did not notice any differences in themes or temporal trajectories based on shorter (less than a year) versus longer diagnosis durations.

Health Care Implications

Our study highlights gaps in PCOS diagnoses and management on the part of health care professionals, which leaves women suspended in uncertainty for a significant portion of their lives. What is clear is that women want more out of their health care: they want providers who listen, are empathic, understanding, respectful, take them seriously, and value open, honest, and transparent communication. They want sufficient time and space to describe their concerns, without feeling rushed, and that their concerns are justified and warrant a response (e.g., investigative testing, an action plan). They also want continuity and coordination of care, and to be involved in medical decision-making.

However, this was not the case for women in our study. Many of the consulted health care providers were antagonistic and dismissive, and lacked a holistic and multi-network framework of assessment and management, despite the fact that comprehensive testing and referral within coordinated care teams leads to efficient diagnoses and outcomes (Boyle & Teede, 2016). In an effort to mitigate diagnosis inaccuracies and lags and to foster better care practices, Teede and colleagues (2018) developed comprehensive, international evidence-based guidelines for the diagnosis and management of PCOS. This major development led to 166 recommendations concerning diagnosis, management, education/health literacy, multidisciplinary care, self-empowerment, mental health, and quality of life impacts. These recommendations were co-developed in partnership with engaged professional societies, consumer organizations, multidisciplinary experts, and consumers including guidelines for women outside of childbearing ages (e.g., adolescents). The latter is important because some of the symptoms of PCOS (e.g., irregular menstruation, anovulation) overlap with typical pubertal development, which makes a conclusive diagnosis challenging during this life stage. These modifications by Teede et al. (2018) are now implemented in practice and will improve diagnosis accuracy and aid in early intervention.

We also recommend that up-to-date women’s health resources be provided at the first point of contact in practitioners’ offices, and referrals should be encouraged and coordinated. Mental health screenings and other appropriate referrals are also necessary (Teede et al., 2018; Williams et al., 2015). Continuing education credits for practitioners would help reduce misconceptions and an ongoing dialogue, and biannual follow-up would be beneficial for long-term management and resolution of concerns. Relatedly, we argue that education for all practitioners and providers must include curriculums that intersect with social justice and feminist foundations. These unpack implicit biases about gender, race, sexuality, heteronormativity, obesity, and intersectionality, which are ingrained and perpetuated within medical contexts. They also deconstruct privilege and power hierarchies, as well as tackle discriminatory practices (Bombak et al., 2016). The inclusion of these types of discussions as part of curriculum reform has been found to foster compassionate clinical practices and more inclusive standards of care (Sharma, 2019).

Supplemental Material

sj-pdf-1-qhr-10.1177_1049732320971235 – Supplemental material for The Diagnostic Experiences of Women With Polycystic Ovary Syndrome (PCOS) in Ontario, Canada

Supplemental material, sj-pdf-1-qhr-10.1177_1049732320971235 for The Diagnostic Experiences of Women With Polycystic Ovary Syndrome (PCOS) in Ontario, Canada by Kendall Soucie, Tanja Samardzic, Kristin Schramer, Cindy Ly and Rachel Katzman in Qualitative Health Research

Footnotes

Acknowledgements

We wish to thank the following individuals: Peiwen (Lily) Cao, Chelsea Reaume, Chantal Vien, Carli Cristofari, Rachel Plowman, Amanda Bailey, Sanaya Dhabhar, Christine Elgie, Noelle Citron, Mikala Jones, Nora McVinnie, Marissa Rakus, Batoul Awada, Kenzie Tapp, Jasmine Kobrosli, Autumn Benoot, and Shreya Sinha. We express our gratitude to our participants for their time and commitment to this study, and for sharing their deeply personal diagnosis experiences with us.

Declaration of Conflicting Interests

The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was supported by the University of Windsor with an Internal Women’s Grant (eRSO #33937, 2015).

ORCID iD

Tanja Samardzic

Supplemental Material

Supplemental Material for this article is available online at . Please enter the article’s DOI, located at the top right hand corner of this article in the search bar, and click on the file folder icon to view.

Notes

Author Biographies

Kendall Soucie is an assistant professor in the Department of Psychology at the University of Windsor. Her research interests are in understanding the social, cultural, and institutional determinants of chronic illness diagnosis and management, particularly within the context of polycystic ovary syndrome.

Tanja Samardzic is a Ph.D. student at the University of Guelph. Broadly, her research interests include women’s experiences in intimate relationships, including relationships where their male partners are abusive, and women’s health.

Kristin Schramer is a Ph.D. Candidate in Applied Social Psychology at the University of Windsor. Her research intrests broadly include women’s health and community health.

Cindy Ly is pursuing her M.A. in Applied Social Psychology at the University of Windsor. Her research interests include human-animal interactions and health psychology.

Rachel Katzman is a Clinical Psychology masters student at the University of Windsor in the Child Track. Her research interests include women’s health and help-seeking behaviour.

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