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Young Women's Experiences Living with Polycystic Ovary Syndrome
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RESEARCH
Young Women’s Experiences Living with Polycystic Ovary Syndrome Theresa R. Weiss and Sandra Minor Bulmer
Correspondence Theresa R. Weiss, MPH Yale School of Medicine 300 George Street, Suite 775 New Haven, CT 06511 [email protected]
ABSTRACT Objective: To explore the psychosocial effects of living with polycystic ovary syndrome (PCOS) through the experiences of young women diagnosed with this endocrine disorder. Design: A qualitative, phenomenological methodology was used. Data were obtained through personal, semistructured interviews. Setting: College campuses in New England.
Keywords psychosocial lived experience qualitative polycystic ovary syndrome PCOS young women quality of life adolescents
Participants: A purposive sample of 12 young women with PCOS age 18 to 23 years. Results: The following themes emerged from analysis of participants’ responses: concerns for older self, feeling physically inferior, coping with symptoms, patient–provider relationship, seeking useable information and support, and coming to terms with a chronic condition. Conclusions: Participants in this study faced numerous physical, social, and emotional challenges on a daily basis. As these young women gathered information relevant to their needs, sought and received social support, and maintained their daily routines to improve their health and appearance, they came to terms with this chronic condition. Based on participants’ relayed experiences, it became evident that a need exists for health care practitioners to include psychosocial support in a comprehensive holistic plan for the treatment of PCOS in adolescents and young women in their early twenties.
JOGNN, 40, 709-718; 2011. DOI: 10.1111/j.1552-6909.2011.01299.x Accepted July 2011
it is thought to stem from heritable and environmental factors (Ojaniemi & Pugeat, 2006). Obesity and the attendant risk of hyperinsulinemia may trigger the syndrome’s onset in genetically predisposed individuals (Arslanian & Witchel, 2002). Onset of PCOS is typically peri-menarchal, and the syndrome’s effects are experienced by women across the life span (Hassan & Gordon, 2007).
The authors report no conflict of interest or relevant financial relationships.
olycystic ovary syndrome (PCOS) is a relatively common yet complex endocrine disorder that occurs in an estimated 5% to 10% of all reproductive-age women (Brady, Mousa, & Mousa, 2009). The syndrome is characterized by hyperandrogenism and amenorrhea or oligomenorrhea (King, 2006) and is associated with infertility and a constellation of immediate and long-term health complications. Common clinical manifestations include hirsutism, acne, alopecia, menstrual abnormalities, recurrent miscarriages, and anovulatory infertility (DuRant & Leslie, 2007). Some studies suggest the chronic anovulation common in women with PCOS may increase their risk of developing endometrial carcinoma from the lengthy states of unopposed estrogen (Azziz, Martin, Hoq, Badamgarav, & Song, 2005). The syndrome is also associated with metabolic findings, including android obesity, hyperinsulinemia, dyslipidemia, and hypertension, placing women with PCOS at greater risk for developing type II diabetes and cardiovascular disease (Apridonidze, Essah, Iuorno, & Nestler, 2005). Its exact etiology eludes researchers, but
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C 2011 AWHONN, the Association of Women’s Health, Obstetric and Neonatal Nurses
Theresa R. Weiss, MPH is a research associate in the Department of Internal Medicine, Yale School of Medicine, New Haven, CT. Sandra Minor Bulmer, PhD, is a professor in the Department of Public Health, Southern Connecticut State University, New Haven, CT.
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Diagnosis of the syndrome in adolescents is especially problematic. Symptoms commonly experienced by girls in their teenage years, such as irregular menses, acne, and weight gain are also part of normal physiologic pubertal changes (Hassan & Gordon, 2007). For this age group, the most robust diagnostic criterion for PCOS is clinical or biological expression of hyperandrogenism. The predominant manifestation of excess androgens is hirsutism, and roughly 70% of women with PCOS are hirsute (King, 2006). Given the many physical and clinical manifestations of PCOS, the potential for emotional distress with this disorder is great.
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Given the many physical and clinical manifestations of polycystic ovary syndrome, the potential for emotional distress in living with the disorder is great.
Much of what is known today about PCOS has been gleaned through quantitative studies primarily focused on the syndrome’s pathophysiology, symptomatology, and pharmacologic treatment. Himelein and Thatcher’s (2006) literature review on mental health problems among women with PCOS began with a search through more than 2,100 PCOS-related studies published in PubMed and PsycInfo databases. The researchers found that between 1990 and 2000 only 3% of the PCOS-related studies addressed psychological concerns. Over the past decade, however, research on PCOS has increasingly examined the effects of the disorder on women’s health-related quality of life (HRQL) (Cronin et al., 1998; McCook, Reame, & Thatcher, 2005; Upadhya & Trent, 2007), which is particularly significant for adolescents and young adults who have to manage a chronic health condition for an extended period of time (Trent, Rich, Austin, & Gordon, 2002). Although PCOS is primarily viewed and treated as a concern of physical health, it is increasingly being recognized that a holistic treatment approach is needed to encompass the syndrome’s psychosocial aspects (e.g., feelings of depression, isolation, anxiety, and frustration) (Himelein & Thatcher, 2006). Psychological distress and perceived diminished quality of life can persist in women with PCOS even after receiving medical care (Elsenbruch et al., 2006). The work by Kitzinger and Willmott (2002) of the United Kingdom was the first qualitative study of women with PCOS to explore the impact of PCOS within a feminist framework. Interviews with 30 women age 21 to 42 years uncovered feelings of frustration and anger toward health professionals for delayed diagnosis and lack of information, and feelings of “freakishness” about their hirsutism, menstrual irregularities, and of being “captive” by the need to strive for the ideals of “normal femininity.” A similar phenomenological study conducted in the northeastern United States with PCOS diagnosed women age 21 to 48 years likewise revealed troubling hirsutism and femininity issues and echoed the theme of wanting to be normal (Snyder, 2006). Despite increased attention to the syndrome’s psychosocial aspects in more recent literature (Mc-
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Cook et al., 2005), there is a paucity of research devoted to investigating this topic qualitatively from the perspective of young women age 18 to 24 years. The manifestations of physical and clinical symptoms often coincide at a time when adolescents and young adults are undergoing identity development and possess a heightened sense of body image awareness (Trent et al., 2002). Social interaction and sexual activity are gaining in importance while the cosmetic and medical problems associated with PCOS affect their emotional well-being. The purpose of this study was to examine the experience of living with PCOS in girls in late adolescence and young women in their early twenties, particularly from the standpoint of the syndrome’s psychosocial effects. This research focused on six primary areas of inquiry: (a) participants’ thoughts and emotions upon being diagnosed, (b) the symptoms they experienced and methods of coping with them, (c) where they have obtained the most useful information and how they have applied it, (d) the types of social support have they drawn from to help them emotionally, (e) their present and future concerns about having PCOS, and (f) their recommendations on how care should be managed for women their age.
Methodology Study Design Gaining an understanding of the personal and social meanings of having PCOS was accomplished through interpretation of data obtained through indepth interviews, which allowed a considerable degree of freedom for young women diagnosed with PCOS to discuss their lived experiences with the disorder. The initial phone or e-mail exchange between researcher and potential participant was to ensure that the participant met the study’s inclusion criteria: English speaking, age 18 to 24 years, and clinically diagnosed with PCOS prior to the study by any of their attending physicians or health care providers. The initial and/or subsequent conversations also served to assess their enthusiasm for participation, answer questions about the study’s purpose, and allay any fears about confidentiality. For reasons of practicality in finding concentrated pools of women in the 18 to 24 age bracket, participants were recruited from three diverse college campuses in Connecticut: a community college, a public university, and a small private university. Letters of support were obtained to post recruitment flyers and conduct interviews on each campus.
JOGNN, 40, 709-718; 2011. DOI: 10.1111/j.1552-6909.2011.01299.x
http://jognn.awhonn.org
RESEARCH
Weiss, T. R. and Bulmer, S. M.
Protection of Human Participants Before initiating the study, Institutional Review Board (IRB) approval was obtained from each of the three academic institutions where recruiting would take place. Upon meeting and prior to being interviewed, participants read and signed an informed consent. Confidentiality was maintained by a number of strategies: participants were assigned pseudonyms, and all field notes, audiotapes, transcripts, and any other paperwork related to the interviews were secured in the first researcher’s locked cabinet at home. All computer files containing participant information were password protected.
Data Collection Interviews were conducted to elicit responses as to what each young woman’s life has been like since the time of her diagnosis. An interview guide containing 20 open-ended questions was developed from a thorough review of the PCOS literature. Use of the guide helped ensure that data was collected consistently, although in qualitative research the researcher’s charge is to encourage participants to actively engage in a free-flowing discussion about the meanings of their experiences. The six primary areas of focus provided the blueprint for forming the questions listed in the guide. The questions were evaluated continually. In the beginning stages of data collection, a question was added to the guide to delve further into an emerging theme regarding participants’ practical application of PCOS- and health-related advice and information. To provide participants with adequate privacy, interviews were conducted in quiet study rooms in campus libraries. With participants’ permission, each interview was audio-recorded and later transcribed verbatim by a professional transcriptionist. The interviews ranged from 20 to 60 minutes. Recruitment continued and interviews were conducted until no new substantial insights or understandings emerged in the data, indicating that saturation had been reached after 12 participants had been interviewed. Field notes were recorded promptly after each interview to capture thoughts, observations, ideas, and reflections in the moment. Trustworthiness of the data was ensured through the application of several strategies outlined by Erlandson, Harris, Skipper, and Allen (1993). The 3-month data collection period provided substantial time for the researchers to develop an in-depth
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understanding of PCOS to be able to discern any misinformation or distortions in the data, whether deliberate or inadvertent. This “prolonged engagement” is a criterion that helps establish credibility, the qualitative counterpart to internal validity in quantitative research. Prolonged engagement was essential to building rapport with participants. Credibility was further insured by having a peer debriefer or independent judge (a professor of nursing) knowledgeable in the qualitative process review the data and examine the line of inquiry and direction of the study. Respondent or member checking was conducted during the interviews to clarify information. This strategy also served as an effective tool in prompting elaboration. As an additional means of ruling out misinterpretation and to acknowledge the young women’s value to the study, they were given the option of reading the transcript of their interview. Four of the 12 participants accepted the offer, with only minor corrections needed.
Data Analysis Transcripts were compared with their corresponding audio recording to ensure accuracy, and then reread to annotate the margins with initial thoughts on categories for coding as recommended by Creswell and Clark (2007). Data analysis followed the constant comparative method as described by Erlandson et al. (1993), with analysis beginning immediately upon data collection—with the first interview. After a careful reexamination of the annotated transcripts, participants’ words, phrases, or sentences present in the data were assigned descriptive codes that best conceptualized or represented a given thought, feeling, expression, or experience. The coded expressions were then grouped according to experiences that were similar, anomalous, or frequently occurring. At this stage of analysis, relationships and themes in the coded data became evident. For example, “feelings about PCOS” was clearly linked to “symptoms” and “coping strategies.” The iterative process of comparing responses from each incoming interview with previous responses (and with the literature) continued until the data from all 12 interviews had been compared and no new concepts or linkages could be identified. The six most prominent themes that emerged from this sample of young women represent a description of their lived experiences with PCOS. Computer software specific to qualitative data analysis (ATLAS.ti version 5.5) was used to facilitate data coding.
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Some were shocked at being diagnosed with such a complex chronic condition that carries so many health implications, especially one they had never heard of.
Results Description of the Sample Participants were a purposive sample of 12 young women age 18 to 23 years. Nine participants identified themselves as White, two as Black, and one as Asian. The mean age of PCOS diagnosis was at 17 years. All of the women were single, although the oldest participant was in a cohabiting relationship (see Table 1).
Concerns for Older Self When participants were asked whether they thought their concerns about having the disorder would change over time, they projected longterm health complications and future infertility for themselves as they aged. Joyce was convinced she would have problems conceiving or lose numerous fetuses like her mother: “I’m not ready to have children just yet, but . . . when it’s time, I’m a little scared . . . my dream is to adopt . . . I just don’t think it’s necessary to go through all the heartache of trying to have babies, and not be successful.” In contrast, Radhika’s viewpoint was the anomaly in the sample because she was not primarily concerned about infertility. However, she brought up a relevant point that none of the other participants had mentioned: potential marital problems created by the inability to conceive.
deeply troubled by having to cope with so many problems and embarrassing physical symptoms. Statements such as, “I don’t really care what other people think of me physically—I’m comfortable with myself” were countered with, “summer time is really scary . . . I hate swimsuits. I don’t ever really wear shorts. It’s embarrassing.” It seemed that for Joyce, no razor or diet pill could erase what were perhaps just as many emotional scars, “If I have my own daughter that has it, I don’t want her to go through as much as I’ve gone through . . . I had a really tough time in high school.” In listening to Lana, however, it became evident that she was most troubled by anovulation rather than any outward physical manifestation attributed to PCOS: I would say the thing that bothered me the most was probably just feeling like not feminine . . . that I’d basically never ovulate, and I’m not fertile . . . it made me kind of jealous of other women . . . I would see one or two studies just casually mentioned in a magazine . . . saying like men are more attracted to women at the time when they’re ovulating . . . I’m never ovulating, so I miss out on that appeal. Adrienne’s comments about the various symptoms she was experiencing with PCOS were equally compelling, and the psychosocial effects were seemingly underscored when she remained in the interview with her hat and coat on, as if to hide her appearance: Knowing all these things about you kind of makes you feel . . . physically inferior . . . I get really uneasy and I can lose my confidence when I think about my physical appearance. Just because I do have more facial hair than most people . . . and like my boobs are really small . . . and the weight gain—losing weight is really tough. I try to . . . muster up some confidence, but it still affects me.
Feeling Physically Inferior For young women in their late teens and early twenties, at the height of body image awareness, having to deal with PCOS-related changes in appearance can be traumatic. These young women were annoyed, frustrated, or deeply embarrassed by one or more PCOS-related symptom that affected their physical appearance. A chief complaint was unwanted body hair. According to Joyce, diagnosed at age 15, “I was already having facial hair [and] just more hair generally all over my body.” The assault to their femininity brought on by the common manifestations of PCOS—primarily weight gain and hirsutism— became clear as the young women described their symptoms, but other alienating and emotional aspects of PCOS were seen as well. Throughout the interview, Joyce’s answers vacillated between an invincible, “I’m fine with me” persona and one
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Coping with Symptoms When participants were asked about alterations in their lifestyle or daily activities as a result of having PCOS, they replied that in general it had little effect; they had adjusted and made dietary and self-care changes, signifying a resolution to do what was necessary to maintain their health. As Joyce put it, “I could be a few pounds lighter,
JOGNN, 40, 709-718; 2011. DOI: 10.1111/j.1552-6909.2011.01299.x
http://jognn.awhonn.org
RESEARCH
Weiss, T. R. and Bulmer, S. M.
Table 1: Participant Demographics Age Diagnosed Participants
Marital
with Polycystic
Number of Years
Covered by
(Pseudonym)
Age
Ethnicity
Status
Ovary Syndrome
Since Diagnosis
Health Insurance
1 Maggie
19
White
Single
17
2
Yes
2 Allison
19
White
Single
19
<1
Yes
3 Tracy
21
White
Single
21
<1
Yes
4 Alexa
18
Black
Single
17
1
Yes
5 Joyce
23
White
Cohabiting
16
7
No
6 Larissa
18
White
Single
17
1
Yes
7 Abby
19
Black
Single
17
2
Yes
8 Sharon
22
White
Single
18
4
Yes
9 Lana
20
White
Single
16
4
Yes
10 Radhika
19
Asian
Single
16
3
Yes
11 Anita
21
White
Single
18
3
Yes
12 Adrienne
19
White
Single
15
4
No
but . . . I still get through my goals, I can still do whatever I need to do.” To these young participants, maintaining their diet and physical activity, limiting their intake of alcohol (none of the women smoked), and continuing their regimen for hair removal was all part of dealing with PCOS. The women in this study were either struggling to maintain their weight or had already gained weight and expressed that they needed to get it under control. Food intake was associated with feelings of guilt. As explained by Tracy, “I feel kind of gross. I don’t know why . . . I feel when I eat something . . . I’m gonna gain weight really quickly . . . and . . . I worry that I’m not going to be able to change and have problems.” Even with regular, strenuous exercise some women had trouble shedding pounds. Allison relayed her frustration with not being able to lose weight even though she played rugby, “I exercise all the time . . . and it doesn’t really come off very easily. It shouldn’t be like that since I’m only 19.” Participants in this study experienced uphill battles in dealing with other physical symptoms, such as skin issues. Some of the participants discussed how they handled hirsutism, like Adrienne, who regularly underwent costly laser hair removal treatments and explained that she has gone twice as long as most women. The most compelling facial hair removal story, though, came from Joyce: “I
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carry a razor in my car, with a little spray bottle and a hand towel . . . usually before my night class I go quickly in my car and do a quick shave if I don’t have time to go home or go anywhere else.”
Patient–Provider Relationship Participants commonly spoke of receiving competent care from their physician, but it was common for the young women to also describe the care as a source of frustration. They experienced gaps in physician’s knowledge about PCOS, resulting in delayed diagnosis, insensitive care, or poor conveyance of information. Physicians were too focused on fertility and ignored other PCOSrelated problems, even though the young women themselves were deeply concerned with their future ability to bear children. Participants’ treating pediatricians and gynecologists either had difficulty in diagnosing PCOS, or for reasons unstated, were simply reluctant to conclude that what they were observing in their patients was not outside normal pubertal development. Lana’s experience elucidates the problem of diagnosing PCOS in adolescents: I really hated my doctor. I was really frustrated, especially when I was like 16, because I felt like they kept pushing me aside
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and they thought that because I was young, it would be normal to have irregular periods, but they didn’t understand the extent of it. And they also didn’t understand, even though I think they knew, that I’d had my period since I was 11 years old, so I had my period for like 5 years. So it’s not like I just got my period last year and they were irregular . . . everyone kept saying, “It’s going to go away when you’re older,” and I’m like, I don’t think so . . . They were still really reluctant to give a diagnosis, and they just said, “Well, just take the birth control pills.”
“Oh, okay,” and they’re like, “We’ll send you some fliers about it.” So that was that . . . I didn’t really know what it was . . . I was not pleased [to] have the receptionist, not even a nurse or a doctor in the office call me. So I switched to another ObGyn. Abby’s experience of incomplete and insensitive care was the extreme. By contrast, Tracy’s experience with her endocrinologist, who was very thorough, placed her at the other end of the spectrum of care: We were there I think for like two hours . . . the first hour, she was explaining everything to me . . . about like eating healthier and exercising because I guess it puts you at greater risk for heart disease and diabetes. She drew pictures and showed me how my uterus was and everything. And the other hour she examined me. She explained everything, I think, really well, so I understand a lot of it.
Oral contraceptives are proven to be an effective treatment modality for regulating menstrual cyclicity, but the method by which they were prescribed cut Lana out of the decision-making process. She continued, “I didn’t like that they would just prescribe birth control pills without talking to me about the options, or what the condition means, or what the health effects [are] of being on birth control pills.” The young women in this study stated that they received enough useful information on PCOS from their diagnosing physician but expressed that it still fell short of what they needed to know to regain control of their health. In Radhika’s words, “At first I don’t think that there was enough emphasis put on what I needed to do in order to recover . . . just that it was necessary that I lose weight and regularize my cycle.” Either the physicians did not stress the importance of why exercise and healthy body weight must be maintained, or the women perceived that the physicians’ only concern was their future fertility. Although Adrienne had no complaints about her actual care, her lament about her incomplete introduction to PCOS was typical of the group. “I got a brief overview . . . one pamphlet, but it was really brief . . . I remember there were a few statistics on it, and just a general overview of what it is . . . symptoms, but it didn’t have anything like health problems that you could experience [later on].” For Abby, however, it was her physician’s method of conveyance of PCOS information that she found most vexing, and that no follow-up visit was offered after having been told she had a chronic condition: They ran test results and said everything was fine. And the receptionist called me a week later . . . it [the conversation] was like, “Actually, you have PCOS.” I was like,
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Even with adequate information provided by her physician, however, Tracy, like all of the other participants, used alternative sources of information to increase her knowledge about PCOS.
Seeking Useable Information and Support Given that PCOS can affect women in myriad ways, it was not surprising the participants would seek answers to a variety of problems based on their particular symptoms and concerns with the disorder. As expected, especially for this age group, the Internet was the medium of choice to obtain PCOS-related information. It was common for participants to initially search in broad terms, and then narrow the focus to specific issues that concerned them, such as symptoms, long-term effects, and treatment options. The participants also sought advice or found solace online from reading about other women with PCOS. They used the stories posted at various websites as a frame of reference for their own concerns or situation. Abby, for example, was deeply concerned about the potential for infertility and found comfort in discovering that not every woman with PCOS is affected by infertility and that many are able to conceive and carry babies to full term. A factor in the women’s ability to apply the gathered information was whether they found the information to be useful: it had to be reasonable
JOGNN, 40, 709-718; 2011. DOI: 10.1111/j.1552-6909.2011.01299.x
http://jognn.awhonn.org
RESEARCH
Weiss, T. R. and Bulmer, S. M.
and its use had to directly benefit the symptom(s) they were trying to alleviate or avoid. For example, when selecting foods, participants stated they looked specifically for nutritional information, knowing the linkages between oral contraceptives and weight gain and high-glycemic foods and diabetes. Lana found that PCOS-specific information provided on the Internet was generally not applicable to her because it was geared toward overweight, nonactive women: I run track here. When I read stuff about PCOS it’s really talking about . . . a lot of people are overweight, so it’s talking about how to start exercising . . . and it doesn’t really help me or apply to me . . . I tried to look for athletes with PCOS, like a support group, but I didn’t find anything like that. In terms of seeking support, simply talking about their concerns, whether it was shared with a cosufferer, or seeing what others with PCOS were experiencing, helped to unburden them and alleviate their anxiety. As expressed by Sharon, having PCOS, “feels kind of alienating.” Anita, at her parent’s urging, joined SoulCysters, one of the best known PCOS on-line support groups but did not find satisfaction in this mode of support. Anita disclosed during the interview that she is bisexual, and although this topic was not probed, there may not have been anyone online at the time, whether visitor or expert, from whom she felt she could draw support or useable information. Nearly all of the participants stated that their families provided the most support and credited their mothers as the primary persons they went to for help or who saw that they got help. However, for two of the participants, either their mothers or both parents, at times, were actually a source of distress as exampled by Anita: Dealing with my parents with this is really difficult . . . all the time my parents are like, “Don’t you think you should lose a little weight?” I am really struggling to feel good about myself and feel comfortable in my body. I agree it might be connected to the syndrome, but I just don’t like the way that they’re addressing it . . . this one thing has led to so many fights. Sharon’s response was atypical in that she did not mention her family as part of her social network. Instead, she found the emotional support she needed at college:
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My freshman year roommate was diagnosed around the same time I was . . . a huge part of being here, has been finding that support system . . . it was really only coming here and meeting a lot of students who had it, that’s when I really started to feel OK about having that diagnosis.
Coming to Terms with a Chronic Condition Participants’ acquisition of information relevant to their individual symptoms or concerns was the first step in becoming comfortable with the disorder. Identifying the cause of a collection of seemingly unrelated symptoms provided a starting point for seeking help and improving their health outcomes, but perhaps more importantly, for coming to terms with a chronic condition. As expressed by Larissa, “I’d been dealing with the symptoms for a while. And we just put a name to it.” Some were shocked at being diagnosed with such a complex chronic condition that carries so many health implications, especially a syndrome that they had never heard of. Adrienne didn’t know it existed, and described the overall diagnosis experience as, “overwhelming . . . it kind of blew my mind that I could have all of these health problems down the line.’’ Abby’s statements summarized the coping strategy common to most of the participants, “there’s not really much I can do about it . . . I’m taking the pill and trying to lose weight. It’s still scary, but it’s definitely not the same level as when it first happened.” Adrienne echoed this sentiment. “I’ve come to terms with it, I guess, and I’m doing what I can. I’m still not OK with it, but I have to accept it. I’m taking meds . . . and I exercise regularly, I watch what I eat, stuff like that.” Abby concluded, “Now it’s . . . just like part of my day, part of my life.”
Discussion Youth-Based Concerns Given the age of the participants in this study, their perspective as a group was that of relative youth looking toward life’s experiences in their late twenties, thirties, and beyond. A notable difference emerged as a function of age and stage in life between this sample of 18- to 23-year-olds and their older counterparts as presented in the literature. Current research points to the ironic contrast between this age group and older PCOS women, whose emotional toll brought on by infertility is actually less intense than adolescents’ worries over fertility potential (Hahn et al., 2005). Indeed,
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concern about future fertility was ever present on the minds of participants in this study. Collectively, it was the single most “what if” question they had to come to terms with. Hahn et al. (2005) reasoned that although the older women with PCOS might be facing difficulties conceiving, their quality of life may be positively influenced because of emotional support received from their spouse or partner. Compounding their infertility worries was a disconcerting belief in the likelihood they would develop serious health complications in the form of cancer, diabetes, or cardiovascular disease. They frequently spoke of impending health problems being exacerbated by their familial health history and predicted that having PCOS would increase their chances. Their most immediate concern, however, dealt with the appearance-related consequences of the syndrome: weight, skin, and hair problems consumed enough of their emotional energy to negatively affect their quality of life. Concern over physical appearance, common in teenagers and those in their early twenties grappling with body image issues and self-esteem, was seemingly magnified by the disorder. Related adolescent-focused research has found that in comparison to healthy peers, PCOS girls’ self-concept in physical and social realms were more closely tied to quality of life than clinical severity of illness (Trent et al., 2002).
Psychosocial Burden Only within the last 5 to 10 years have PCOS studies begun to focus on detriments to quality of life. Anxieties brought on by comorbidities that can include diabetes, insulin resistance, and metabolic syndrome, in addition to the challenges to feminine identity due to problems with chronic weight gain, acne, hirsutism, and menstrual disturbances, symptoms clearly found in this sample of young women, are gaining attention in the field of PCOS research. In response to this recognition, authors are increasingly emphasizing the need for greater attention to the syndrome’s “psychosocial burden” (Brady et al., 2009) and cite the need for health care practitioners to include this aspect in a comprehensive, holistic treatment plan. Having the ability to cope with the variety of symptoms on a daily basis typically requires some form of support. All of the participants responded that they received the level of emotional support they needed from family, friends, and other in-
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dividuals to help them deal with most of what PCOS entails. However, they stressed the need for a stronger patient–provider relationship: they wanted to feel supported, respected, and listened to by their health care providers. The participants also expressed a desire for continued research into the disorder to increase knowledge and heighten awareness of the psychosocial aspects of the syndrome.
Entry Into the Health Care System Adolescence is a period when teenagers are learning how to take responsibility for their health independent of their parents. This study’s participants displayed initiative to do exactly that by undertaking their own research, either to discover the source of their troubling symptoms or to supplement information given at the time of diagnosis. Given that the mean age at which they were diagnosed was 17, these young women might have derived benefit from the American Congress of Obstetricians and Gynecologists’ (ACOG) recent recommendation that girls as young as age 13 to 15 begin annual reproductive health care visits in addition to their annual well-child visits. ACOG’s stance arose from the high pregnancy and sexually transmitted infection (STI) rates in the United States. By engaging teens early on in discussions that include pubertal development, healthy eating habits, STIs, normal menses, pregnancy prevention, and gender identity, ACOG asserts that the obstetrician–gynecologist can supplement care given by the primary health care provider and build a supportive physician–patient relationship as teens start learning to negotiate the health care system on their own (ACOG, 2010). There is an additional benefit to early reproductive care and ongoing discussion with girls diagnosed with PCOS in that some data suggest these adolescents may be less likely to use contraceptives if they perceive their fertility is diminished or impaired (Upadhya & Trent, 2007). Meeting the young women’s informational needs was integral to their understanding and acceptance of their health status and new role as manager of a chronic condition. Most of the participants stated the information they received was adequate but left them still searching for answers. Oftentimes they did not understand it—they did not have a full grasp of PCOS and what they needed to do to “get control.” For example, Abby’s physician recommended she lose weight because she was insulin resistant, but the physiological benefits of weight loss were not clear: “losing weight’s
JOGNN, 40, 709-718; 2011. DOI: 10.1111/j.1552-6909.2011.01299.x
http://jognn.awhonn.org
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Weiss, T. R. and Bulmer, S. M.
supposed to fix that . . . [but] I don’t understand how that’s going to automatically make it all go away.” Besides its association with diabetes, insulin resistance also contributes to ovulatory dysfunction. For obese and overweight women with PCOS, a small reduction in body weight by as little as 5% to 7% has been shown to decrease androgen levels enough to improve menstrual function and insulin sensitivity, thereby reducing their risk of developing diabetes (Hassan & Gordon, 2007). Information is necessary but not sufficient to improve health-related behavior. This is especially important for health care providers to realize in relation to the lifestyle modifications they recommend and to the practices adolescents must implement and maintain. Participants expressed the need for patient-focused guidance to help them be better informed in making decisions about their health. Toward that end, recognizing adolescence as a time of developing self-regulatory tendencies and skills, a manual-based, cognitive-behavioral intervention by Rofey et al. (2009) resulted in notable reductions in obesity and depression in their sample of adolescents with PCOS. Improvements in participants’ physical health measurements, depressive symptoms, and HQRL were achieved through eight, individual, weekly sessions and three family-based sessions, focusing on coping mechanisms, parent–adolescent dynamics, motivational concepts, increasing physical activity, and cognitive-restructuring techniques. This holistic, multifaceted approach is strongly in alignment with recommendations made by the young women in this study.
Limitations Limitations were imposed on this study by the use of purposive sampling and the recruitment strategy. By targeting college campuses to gain access to appropriate age groups, the findings from the purposive sample were neither random nor generalizable. The sample was relatively homogeneous demographically, especially in educational attainment. Given that all of the participants were attending college, all represented middleand upper-class incomes, and most were White, it is conceivable that different results would be found in a more heterogeneous sample of young women. Participants were not asked to provide documented proof of their diagnosis. The level of detail provided by all the young women was substantial
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The young women wanted more guidance and self-management support to help them make informed decisions about their health.
and accepted as evidence that individual participants met inclusion criteria. Some caution is in order regarding the possibility of recall bias because of the retrospective nature of some of the interview questions used in this study. Many of the participants had been diagnosed 3, 4, or as many as 7 years prior, and gaps could exist in recalling exact details about their thoughts and emotions around the time of their diagnosis. However, the data obtained through this methodology still proved advantageous in achieving the overall purpose of the study. The perspective gained through this research contributes to the contextual understanding of the experiences and perceptions of young women living with PCOS and may provide a foundation for further research, perhaps with girls with PCOS in their early teenage years.
Recommendations Results of this study suggest the need for health care professionals to further build on their commitment to fostering positive and supportive relationships with young women with PCOS in adolescence and early adulthood. Ideally, patient– provider interactions should address individual concerns of the patient and quality of life issues (Upadhya & Trent, 2007). To help ameliorate troubling symptoms that promote feelings of isolation, frustration, and anxiety, important linkages (e.g., between insulin resistance and physiological benefits of weight loss and increased physical activity) must be understood by the patient for them to not only become more knowledgeable about the syndrome, but also to feel empowered in making informed health care choices on their own behalf as they manage this chronic condition (Snyder, 2006). Based on the participants’ recommendations for additional guidance and support, it is conceivable (given the close association between PCOS and diabetes) that PCOS education measures could be incorporated into diabetes selfmanagement education classes and venues, with several components separately addressing PCOS issues. Within a campus setting, PCOS support groups such as those sponsored by student health services could increase the availability of
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interventions to reduce the distress adolescents and young adults face with the syndrome. Cognitive-behavioral interventions as described by Rofey et al. (2009) may prove to be a highly feasible and effective method of improving physiological and psychosocial functioning in adolescents with PCOS. Regardless of the approach, however, increasing the availability of interventions and avenues of support is crucial in setting the stage for young women to develop life-long healthy behaviors to help them self-manage the disorder as they face the attendant challenges in living with PCOS.
Elsenbruch, S., Benson, S., Hahn, S., Tan, S., Mann, K., Pleger, K., . . . Janssen, O. E. (2006). Determinants of emotional distress in women with polycystic ovary syndrome. Human Reproduction, 21 (4), 1092–1099. doi:10.1093/humrep/dei409 Erlandson, D. A., Harris, E. L., Skipper, B. L., & Allen, S. D. (1993). Doing naturalistic inquiry: A guide to methods. Newbury Park, CA: Sage. Hahn, S., Janssen, O. E., Tan, S., Pleger, K., Mann, K., Schedlowski, M., . . . Elsenbruch, S. (2005). Clinical and psychological correlates of quality-of-life in polycystic ovary syndrome. European Journal of Endocrinology, 153, 853–860. doi:10.1530/eje.1. 02024 Hassan, A., & Gordon, C. M. (2007). Polycystic ovary syndrome in adolescence. Current Opinion in Pediatrics, 19 (4), 389– 397. Himelein, M. J., & Thatcher, S. S. (2006). Polycystic ovary syndrome and
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Young Women’s Experiences Living with Polycystic Ovary Syndrome Theresa R. Weiss and Sandra Minor Bulmer
Correspondence Theresa R. Weiss, MPH Yale School of Medicine 300 George Street, Suite 775 New Haven, CT 06511 [email protected]
ABSTRACT Objective: To explore the psychosocial effects of living with polycystic ovary syndrome (PCOS) through the experiences of young women diagnosed with this endocrine disorder. Design: A qualitative, phenomenological methodology was used. Data were obtained through personal, semistructured interviews. Setting: College campuses in New England.
Keywords psychosocial lived experience qualitative polycystic ovary syndrome PCOS young women quality of life adolescents
Participants: A purposive sample of 12 young women with PCOS age 18 to 23 years. Results: The following themes emerged from analysis of participants’ responses: concerns for older self, feeling physically inferior, coping with symptoms, patient–provider relationship, seeking useable information and support, and coming to terms with a chronic condition. Conclusions: Participants in this study faced numerous physical, social, and emotional challenges on a daily basis. As these young women gathered information relevant to their needs, sought and received social support, and maintained their daily routines to improve their health and appearance, they came to terms with this chronic condition. Based on participants’ relayed experiences, it became evident that a need exists for health care practitioners to include psychosocial support in a comprehensive holistic plan for the treatment of PCOS in adolescents and young women in their early twenties.
JOGNN, 40, 709-718; 2011. DOI: 10.1111/j.1552-6909.2011.01299.x Accepted July 2011
it is thought to stem from heritable and environmental factors (Ojaniemi & Pugeat, 2006). Obesity and the attendant risk of hyperinsulinemia may trigger the syndrome’s onset in genetically predisposed individuals (Arslanian & Witchel, 2002). Onset of PCOS is typically peri-menarchal, and the syndrome’s effects are experienced by women across the life span (Hassan & Gordon, 2007).
The authors report no conflict of interest or relevant financial relationships.
olycystic ovary syndrome (PCOS) is a relatively common yet complex endocrine disorder that occurs in an estimated 5% to 10% of all reproductive-age women (Brady, Mousa, & Mousa, 2009). The syndrome is characterized by hyperandrogenism and amenorrhea or oligomenorrhea (King, 2006) and is associated with infertility and a constellation of immediate and long-term health complications. Common clinical manifestations include hirsutism, acne, alopecia, menstrual abnormalities, recurrent miscarriages, and anovulatory infertility (DuRant & Leslie, 2007). Some studies suggest the chronic anovulation common in women with PCOS may increase their risk of developing endometrial carcinoma from the lengthy states of unopposed estrogen (Azziz, Martin, Hoq, Badamgarav, & Song, 2005). The syndrome is also associated with metabolic findings, including android obesity, hyperinsulinemia, dyslipidemia, and hypertension, placing women with PCOS at greater risk for developing type II diabetes and cardiovascular disease (Apridonidze, Essah, Iuorno, & Nestler, 2005). Its exact etiology eludes researchers, but
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C 2011 AWHONN, the Association of Women’s Health, Obstetric and Neonatal Nurses
Theresa R. Weiss, MPH is a research associate in the Department of Internal Medicine, Yale School of Medicine, New Haven, CT. Sandra Minor Bulmer, PhD, is a professor in the Department of Public Health, Southern Connecticut State University, New Haven, CT.
P
Diagnosis of the syndrome in adolescents is especially problematic. Symptoms commonly experienced by girls in their teenage years, such as irregular menses, acne, and weight gain are also part of normal physiologic pubertal changes (Hassan & Gordon, 2007). For this age group, the most robust diagnostic criterion for PCOS is clinical or biological expression of hyperandrogenism. The predominant manifestation of excess androgens is hirsutism, and roughly 70% of women with PCOS are hirsute (King, 2006). Given the many physical and clinical manifestations of PCOS, the potential for emotional distress with this disorder is great.
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Given the many physical and clinical manifestations of polycystic ovary syndrome, the potential for emotional distress in living with the disorder is great.
Much of what is known today about PCOS has been gleaned through quantitative studies primarily focused on the syndrome’s pathophysiology, symptomatology, and pharmacologic treatment. Himelein and Thatcher’s (2006) literature review on mental health problems among women with PCOS began with a search through more than 2,100 PCOS-related studies published in PubMed and PsycInfo databases. The researchers found that between 1990 and 2000 only 3% of the PCOS-related studies addressed psychological concerns. Over the past decade, however, research on PCOS has increasingly examined the effects of the disorder on women’s health-related quality of life (HRQL) (Cronin et al., 1998; McCook, Reame, & Thatcher, 2005; Upadhya & Trent, 2007), which is particularly significant for adolescents and young adults who have to manage a chronic health condition for an extended period of time (Trent, Rich, Austin, & Gordon, 2002). Although PCOS is primarily viewed and treated as a concern of physical health, it is increasingly being recognized that a holistic treatment approach is needed to encompass the syndrome’s psychosocial aspects (e.g., feelings of depression, isolation, anxiety, and frustration) (Himelein & Thatcher, 2006). Psychological distress and perceived diminished quality of life can persist in women with PCOS even after receiving medical care (Elsenbruch et al., 2006). The work by Kitzinger and Willmott (2002) of the United Kingdom was the first qualitative study of women with PCOS to explore the impact of PCOS within a feminist framework. Interviews with 30 women age 21 to 42 years uncovered feelings of frustration and anger toward health professionals for delayed diagnosis and lack of information, and feelings of “freakishness” about their hirsutism, menstrual irregularities, and of being “captive” by the need to strive for the ideals of “normal femininity.” A similar phenomenological study conducted in the northeastern United States with PCOS diagnosed women age 21 to 48 years likewise revealed troubling hirsutism and femininity issues and echoed the theme of wanting to be normal (Snyder, 2006). Despite increased attention to the syndrome’s psychosocial aspects in more recent literature (Mc-
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Cook et al., 2005), there is a paucity of research devoted to investigating this topic qualitatively from the perspective of young women age 18 to 24 years. The manifestations of physical and clinical symptoms often coincide at a time when adolescents and young adults are undergoing identity development and possess a heightened sense of body image awareness (Trent et al., 2002). Social interaction and sexual activity are gaining in importance while the cosmetic and medical problems associated with PCOS affect their emotional well-being. The purpose of this study was to examine the experience of living with PCOS in girls in late adolescence and young women in their early twenties, particularly from the standpoint of the syndrome’s psychosocial effects. This research focused on six primary areas of inquiry: (a) participants’ thoughts and emotions upon being diagnosed, (b) the symptoms they experienced and methods of coping with them, (c) where they have obtained the most useful information and how they have applied it, (d) the types of social support have they drawn from to help them emotionally, (e) their present and future concerns about having PCOS, and (f) their recommendations on how care should be managed for women their age.
Methodology Study Design Gaining an understanding of the personal and social meanings of having PCOS was accomplished through interpretation of data obtained through indepth interviews, which allowed a considerable degree of freedom for young women diagnosed with PCOS to discuss their lived experiences with the disorder. The initial phone or e-mail exchange between researcher and potential participant was to ensure that the participant met the study’s inclusion criteria: English speaking, age 18 to 24 years, and clinically diagnosed with PCOS prior to the study by any of their attending physicians or health care providers. The initial and/or subsequent conversations also served to assess their enthusiasm for participation, answer questions about the study’s purpose, and allay any fears about confidentiality. For reasons of practicality in finding concentrated pools of women in the 18 to 24 age bracket, participants were recruited from three diverse college campuses in Connecticut: a community college, a public university, and a small private university. Letters of support were obtained to post recruitment flyers and conduct interviews on each campus.
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Protection of Human Participants Before initiating the study, Institutional Review Board (IRB) approval was obtained from each of the three academic institutions where recruiting would take place. Upon meeting and prior to being interviewed, participants read and signed an informed consent. Confidentiality was maintained by a number of strategies: participants were assigned pseudonyms, and all field notes, audiotapes, transcripts, and any other paperwork related to the interviews were secured in the first researcher’s locked cabinet at home. All computer files containing participant information were password protected.
Data Collection Interviews were conducted to elicit responses as to what each young woman’s life has been like since the time of her diagnosis. An interview guide containing 20 open-ended questions was developed from a thorough review of the PCOS literature. Use of the guide helped ensure that data was collected consistently, although in qualitative research the researcher’s charge is to encourage participants to actively engage in a free-flowing discussion about the meanings of their experiences. The six primary areas of focus provided the blueprint for forming the questions listed in the guide. The questions were evaluated continually. In the beginning stages of data collection, a question was added to the guide to delve further into an emerging theme regarding participants’ practical application of PCOS- and health-related advice and information. To provide participants with adequate privacy, interviews were conducted in quiet study rooms in campus libraries. With participants’ permission, each interview was audio-recorded and later transcribed verbatim by a professional transcriptionist. The interviews ranged from 20 to 60 minutes. Recruitment continued and interviews were conducted until no new substantial insights or understandings emerged in the data, indicating that saturation had been reached after 12 participants had been interviewed. Field notes were recorded promptly after each interview to capture thoughts, observations, ideas, and reflections in the moment. Trustworthiness of the data was ensured through the application of several strategies outlined by Erlandson, Harris, Skipper, and Allen (1993). The 3-month data collection period provided substantial time for the researchers to develop an in-depth
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understanding of PCOS to be able to discern any misinformation or distortions in the data, whether deliberate or inadvertent. This “prolonged engagement” is a criterion that helps establish credibility, the qualitative counterpart to internal validity in quantitative research. Prolonged engagement was essential to building rapport with participants. Credibility was further insured by having a peer debriefer or independent judge (a professor of nursing) knowledgeable in the qualitative process review the data and examine the line of inquiry and direction of the study. Respondent or member checking was conducted during the interviews to clarify information. This strategy also served as an effective tool in prompting elaboration. As an additional means of ruling out misinterpretation and to acknowledge the young women’s value to the study, they were given the option of reading the transcript of their interview. Four of the 12 participants accepted the offer, with only minor corrections needed.
Data Analysis Transcripts were compared with their corresponding audio recording to ensure accuracy, and then reread to annotate the margins with initial thoughts on categories for coding as recommended by Creswell and Clark (2007). Data analysis followed the constant comparative method as described by Erlandson et al. (1993), with analysis beginning immediately upon data collection—with the first interview. After a careful reexamination of the annotated transcripts, participants’ words, phrases, or sentences present in the data were assigned descriptive codes that best conceptualized or represented a given thought, feeling, expression, or experience. The coded expressions were then grouped according to experiences that were similar, anomalous, or frequently occurring. At this stage of analysis, relationships and themes in the coded data became evident. For example, “feelings about PCOS” was clearly linked to “symptoms” and “coping strategies.” The iterative process of comparing responses from each incoming interview with previous responses (and with the literature) continued until the data from all 12 interviews had been compared and no new concepts or linkages could be identified. The six most prominent themes that emerged from this sample of young women represent a description of their lived experiences with PCOS. Computer software specific to qualitative data analysis (ATLAS.ti version 5.5) was used to facilitate data coding.
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Some were shocked at being diagnosed with such a complex chronic condition that carries so many health implications, especially one they had never heard of.
Results Description of the Sample Participants were a purposive sample of 12 young women age 18 to 23 years. Nine participants identified themselves as White, two as Black, and one as Asian. The mean age of PCOS diagnosis was at 17 years. All of the women were single, although the oldest participant was in a cohabiting relationship (see Table 1).
Concerns for Older Self When participants were asked whether they thought their concerns about having the disorder would change over time, they projected longterm health complications and future infertility for themselves as they aged. Joyce was convinced she would have problems conceiving or lose numerous fetuses like her mother: “I’m not ready to have children just yet, but . . . when it’s time, I’m a little scared . . . my dream is to adopt . . . I just don’t think it’s necessary to go through all the heartache of trying to have babies, and not be successful.” In contrast, Radhika’s viewpoint was the anomaly in the sample because she was not primarily concerned about infertility. However, she brought up a relevant point that none of the other participants had mentioned: potential marital problems created by the inability to conceive.
deeply troubled by having to cope with so many problems and embarrassing physical symptoms. Statements such as, “I don’t really care what other people think of me physically—I’m comfortable with myself” were countered with, “summer time is really scary . . . I hate swimsuits. I don’t ever really wear shorts. It’s embarrassing.” It seemed that for Joyce, no razor or diet pill could erase what were perhaps just as many emotional scars, “If I have my own daughter that has it, I don’t want her to go through as much as I’ve gone through . . . I had a really tough time in high school.” In listening to Lana, however, it became evident that she was most troubled by anovulation rather than any outward physical manifestation attributed to PCOS: I would say the thing that bothered me the most was probably just feeling like not feminine . . . that I’d basically never ovulate, and I’m not fertile . . . it made me kind of jealous of other women . . . I would see one or two studies just casually mentioned in a magazine . . . saying like men are more attracted to women at the time when they’re ovulating . . . I’m never ovulating, so I miss out on that appeal. Adrienne’s comments about the various symptoms she was experiencing with PCOS were equally compelling, and the psychosocial effects were seemingly underscored when she remained in the interview with her hat and coat on, as if to hide her appearance: Knowing all these things about you kind of makes you feel . . . physically inferior . . . I get really uneasy and I can lose my confidence when I think about my physical appearance. Just because I do have more facial hair than most people . . . and like my boobs are really small . . . and the weight gain—losing weight is really tough. I try to . . . muster up some confidence, but it still affects me.
Feeling Physically Inferior For young women in their late teens and early twenties, at the height of body image awareness, having to deal with PCOS-related changes in appearance can be traumatic. These young women were annoyed, frustrated, or deeply embarrassed by one or more PCOS-related symptom that affected their physical appearance. A chief complaint was unwanted body hair. According to Joyce, diagnosed at age 15, “I was already having facial hair [and] just more hair generally all over my body.” The assault to their femininity brought on by the common manifestations of PCOS—primarily weight gain and hirsutism— became clear as the young women described their symptoms, but other alienating and emotional aspects of PCOS were seen as well. Throughout the interview, Joyce’s answers vacillated between an invincible, “I’m fine with me” persona and one
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Coping with Symptoms When participants were asked about alterations in their lifestyle or daily activities as a result of having PCOS, they replied that in general it had little effect; they had adjusted and made dietary and self-care changes, signifying a resolution to do what was necessary to maintain their health. As Joyce put it, “I could be a few pounds lighter,
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Table 1: Participant Demographics Age Diagnosed Participants
Marital
with Polycystic
Number of Years
Covered by
(Pseudonym)
Age
Ethnicity
Status
Ovary Syndrome
Since Diagnosis
Health Insurance
1 Maggie
19
White
Single
17
2
Yes
2 Allison
19
White
Single
19
<1
Yes
3 Tracy
21
White
Single
21
<1
Yes
4 Alexa
18
Black
Single
17
1
Yes
5 Joyce
23
White
Cohabiting
16
7
No
6 Larissa
18
White
Single
17
1
Yes
7 Abby
19
Black
Single
17
2
Yes
8 Sharon
22
White
Single
18
4
Yes
9 Lana
20
White
Single
16
4
Yes
10 Radhika
19
Asian
Single
16
3
Yes
11 Anita
21
White
Single
18
3
Yes
12 Adrienne
19
White
Single
15
4
No
but . . . I still get through my goals, I can still do whatever I need to do.” To these young participants, maintaining their diet and physical activity, limiting their intake of alcohol (none of the women smoked), and continuing their regimen for hair removal was all part of dealing with PCOS. The women in this study were either struggling to maintain their weight or had already gained weight and expressed that they needed to get it under control. Food intake was associated with feelings of guilt. As explained by Tracy, “I feel kind of gross. I don’t know why . . . I feel when I eat something . . . I’m gonna gain weight really quickly . . . and . . . I worry that I’m not going to be able to change and have problems.” Even with regular, strenuous exercise some women had trouble shedding pounds. Allison relayed her frustration with not being able to lose weight even though she played rugby, “I exercise all the time . . . and it doesn’t really come off very easily. It shouldn’t be like that since I’m only 19.” Participants in this study experienced uphill battles in dealing with other physical symptoms, such as skin issues. Some of the participants discussed how they handled hirsutism, like Adrienne, who regularly underwent costly laser hair removal treatments and explained that she has gone twice as long as most women. The most compelling facial hair removal story, though, came from Joyce: “I
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carry a razor in my car, with a little spray bottle and a hand towel . . . usually before my night class I go quickly in my car and do a quick shave if I don’t have time to go home or go anywhere else.”
Patient–Provider Relationship Participants commonly spoke of receiving competent care from their physician, but it was common for the young women to also describe the care as a source of frustration. They experienced gaps in physician’s knowledge about PCOS, resulting in delayed diagnosis, insensitive care, or poor conveyance of information. Physicians were too focused on fertility and ignored other PCOSrelated problems, even though the young women themselves were deeply concerned with their future ability to bear children. Participants’ treating pediatricians and gynecologists either had difficulty in diagnosing PCOS, or for reasons unstated, were simply reluctant to conclude that what they were observing in their patients was not outside normal pubertal development. Lana’s experience elucidates the problem of diagnosing PCOS in adolescents: I really hated my doctor. I was really frustrated, especially when I was like 16, because I felt like they kept pushing me aside
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and they thought that because I was young, it would be normal to have irregular periods, but they didn’t understand the extent of it. And they also didn’t understand, even though I think they knew, that I’d had my period since I was 11 years old, so I had my period for like 5 years. So it’s not like I just got my period last year and they were irregular . . . everyone kept saying, “It’s going to go away when you’re older,” and I’m like, I don’t think so . . . They were still really reluctant to give a diagnosis, and they just said, “Well, just take the birth control pills.”
“Oh, okay,” and they’re like, “We’ll send you some fliers about it.” So that was that . . . I didn’t really know what it was . . . I was not pleased [to] have the receptionist, not even a nurse or a doctor in the office call me. So I switched to another ObGyn. Abby’s experience of incomplete and insensitive care was the extreme. By contrast, Tracy’s experience with her endocrinologist, who was very thorough, placed her at the other end of the spectrum of care: We were there I think for like two hours . . . the first hour, she was explaining everything to me . . . about like eating healthier and exercising because I guess it puts you at greater risk for heart disease and diabetes. She drew pictures and showed me how my uterus was and everything. And the other hour she examined me. She explained everything, I think, really well, so I understand a lot of it.
Oral contraceptives are proven to be an effective treatment modality for regulating menstrual cyclicity, but the method by which they were prescribed cut Lana out of the decision-making process. She continued, “I didn’t like that they would just prescribe birth control pills without talking to me about the options, or what the condition means, or what the health effects [are] of being on birth control pills.” The young women in this study stated that they received enough useful information on PCOS from their diagnosing physician but expressed that it still fell short of what they needed to know to regain control of their health. In Radhika’s words, “At first I don’t think that there was enough emphasis put on what I needed to do in order to recover . . . just that it was necessary that I lose weight and regularize my cycle.” Either the physicians did not stress the importance of why exercise and healthy body weight must be maintained, or the women perceived that the physicians’ only concern was their future fertility. Although Adrienne had no complaints about her actual care, her lament about her incomplete introduction to PCOS was typical of the group. “I got a brief overview . . . one pamphlet, but it was really brief . . . I remember there were a few statistics on it, and just a general overview of what it is . . . symptoms, but it didn’t have anything like health problems that you could experience [later on].” For Abby, however, it was her physician’s method of conveyance of PCOS information that she found most vexing, and that no follow-up visit was offered after having been told she had a chronic condition: They ran test results and said everything was fine. And the receptionist called me a week later . . . it [the conversation] was like, “Actually, you have PCOS.” I was like,
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Even with adequate information provided by her physician, however, Tracy, like all of the other participants, used alternative sources of information to increase her knowledge about PCOS.
Seeking Useable Information and Support Given that PCOS can affect women in myriad ways, it was not surprising the participants would seek answers to a variety of problems based on their particular symptoms and concerns with the disorder. As expected, especially for this age group, the Internet was the medium of choice to obtain PCOS-related information. It was common for participants to initially search in broad terms, and then narrow the focus to specific issues that concerned them, such as symptoms, long-term effects, and treatment options. The participants also sought advice or found solace online from reading about other women with PCOS. They used the stories posted at various websites as a frame of reference for their own concerns or situation. Abby, for example, was deeply concerned about the potential for infertility and found comfort in discovering that not every woman with PCOS is affected by infertility and that many are able to conceive and carry babies to full term. A factor in the women’s ability to apply the gathered information was whether they found the information to be useful: it had to be reasonable
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and its use had to directly benefit the symptom(s) they were trying to alleviate or avoid. For example, when selecting foods, participants stated they looked specifically for nutritional information, knowing the linkages between oral contraceptives and weight gain and high-glycemic foods and diabetes. Lana found that PCOS-specific information provided on the Internet was generally not applicable to her because it was geared toward overweight, nonactive women: I run track here. When I read stuff about PCOS it’s really talking about . . . a lot of people are overweight, so it’s talking about how to start exercising . . . and it doesn’t really help me or apply to me . . . I tried to look for athletes with PCOS, like a support group, but I didn’t find anything like that. In terms of seeking support, simply talking about their concerns, whether it was shared with a cosufferer, or seeing what others with PCOS were experiencing, helped to unburden them and alleviate their anxiety. As expressed by Sharon, having PCOS, “feels kind of alienating.” Anita, at her parent’s urging, joined SoulCysters, one of the best known PCOS on-line support groups but did not find satisfaction in this mode of support. Anita disclosed during the interview that she is bisexual, and although this topic was not probed, there may not have been anyone online at the time, whether visitor or expert, from whom she felt she could draw support or useable information. Nearly all of the participants stated that their families provided the most support and credited their mothers as the primary persons they went to for help or who saw that they got help. However, for two of the participants, either their mothers or both parents, at times, were actually a source of distress as exampled by Anita: Dealing with my parents with this is really difficult . . . all the time my parents are like, “Don’t you think you should lose a little weight?” I am really struggling to feel good about myself and feel comfortable in my body. I agree it might be connected to the syndrome, but I just don’t like the way that they’re addressing it . . . this one thing has led to so many fights. Sharon’s response was atypical in that she did not mention her family as part of her social network. Instead, she found the emotional support she needed at college:
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My freshman year roommate was diagnosed around the same time I was . . . a huge part of being here, has been finding that support system . . . it was really only coming here and meeting a lot of students who had it, that’s when I really started to feel OK about having that diagnosis.
Coming to Terms with a Chronic Condition Participants’ acquisition of information relevant to their individual symptoms or concerns was the first step in becoming comfortable with the disorder. Identifying the cause of a collection of seemingly unrelated symptoms provided a starting point for seeking help and improving their health outcomes, but perhaps more importantly, for coming to terms with a chronic condition. As expressed by Larissa, “I’d been dealing with the symptoms for a while. And we just put a name to it.” Some were shocked at being diagnosed with such a complex chronic condition that carries so many health implications, especially a syndrome that they had never heard of. Adrienne didn’t know it existed, and described the overall diagnosis experience as, “overwhelming . . . it kind of blew my mind that I could have all of these health problems down the line.’’ Abby’s statements summarized the coping strategy common to most of the participants, “there’s not really much I can do about it . . . I’m taking the pill and trying to lose weight. It’s still scary, but it’s definitely not the same level as when it first happened.” Adrienne echoed this sentiment. “I’ve come to terms with it, I guess, and I’m doing what I can. I’m still not OK with it, but I have to accept it. I’m taking meds . . . and I exercise regularly, I watch what I eat, stuff like that.” Abby concluded, “Now it’s . . . just like part of my day, part of my life.”
Discussion Youth-Based Concerns Given the age of the participants in this study, their perspective as a group was that of relative youth looking toward life’s experiences in their late twenties, thirties, and beyond. A notable difference emerged as a function of age and stage in life between this sample of 18- to 23-year-olds and their older counterparts as presented in the literature. Current research points to the ironic contrast between this age group and older PCOS women, whose emotional toll brought on by infertility is actually less intense than adolescents’ worries over fertility potential (Hahn et al., 2005). Indeed,
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concern about future fertility was ever present on the minds of participants in this study. Collectively, it was the single most “what if” question they had to come to terms with. Hahn et al. (2005) reasoned that although the older women with PCOS might be facing difficulties conceiving, their quality of life may be positively influenced because of emotional support received from their spouse or partner. Compounding their infertility worries was a disconcerting belief in the likelihood they would develop serious health complications in the form of cancer, diabetes, or cardiovascular disease. They frequently spoke of impending health problems being exacerbated by their familial health history and predicted that having PCOS would increase their chances. Their most immediate concern, however, dealt with the appearance-related consequences of the syndrome: weight, skin, and hair problems consumed enough of their emotional energy to negatively affect their quality of life. Concern over physical appearance, common in teenagers and those in their early twenties grappling with body image issues and self-esteem, was seemingly magnified by the disorder. Related adolescent-focused research has found that in comparison to healthy peers, PCOS girls’ self-concept in physical and social realms were more closely tied to quality of life than clinical severity of illness (Trent et al., 2002).
Psychosocial Burden Only within the last 5 to 10 years have PCOS studies begun to focus on detriments to quality of life. Anxieties brought on by comorbidities that can include diabetes, insulin resistance, and metabolic syndrome, in addition to the challenges to feminine identity due to problems with chronic weight gain, acne, hirsutism, and menstrual disturbances, symptoms clearly found in this sample of young women, are gaining attention in the field of PCOS research. In response to this recognition, authors are increasingly emphasizing the need for greater attention to the syndrome’s “psychosocial burden” (Brady et al., 2009) and cite the need for health care practitioners to include this aspect in a comprehensive, holistic treatment plan. Having the ability to cope with the variety of symptoms on a daily basis typically requires some form of support. All of the participants responded that they received the level of emotional support they needed from family, friends, and other in-
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dividuals to help them deal with most of what PCOS entails. However, they stressed the need for a stronger patient–provider relationship: they wanted to feel supported, respected, and listened to by their health care providers. The participants also expressed a desire for continued research into the disorder to increase knowledge and heighten awareness of the psychosocial aspects of the syndrome.
Entry Into the Health Care System Adolescence is a period when teenagers are learning how to take responsibility for their health independent of their parents. This study’s participants displayed initiative to do exactly that by undertaking their own research, either to discover the source of their troubling symptoms or to supplement information given at the time of diagnosis. Given that the mean age at which they were diagnosed was 17, these young women might have derived benefit from the American Congress of Obstetricians and Gynecologists’ (ACOG) recent recommendation that girls as young as age 13 to 15 begin annual reproductive health care visits in addition to their annual well-child visits. ACOG’s stance arose from the high pregnancy and sexually transmitted infection (STI) rates in the United States. By engaging teens early on in discussions that include pubertal development, healthy eating habits, STIs, normal menses, pregnancy prevention, and gender identity, ACOG asserts that the obstetrician–gynecologist can supplement care given by the primary health care provider and build a supportive physician–patient relationship as teens start learning to negotiate the health care system on their own (ACOG, 2010). There is an additional benefit to early reproductive care and ongoing discussion with girls diagnosed with PCOS in that some data suggest these adolescents may be less likely to use contraceptives if they perceive their fertility is diminished or impaired (Upadhya & Trent, 2007). Meeting the young women’s informational needs was integral to their understanding and acceptance of their health status and new role as manager of a chronic condition. Most of the participants stated the information they received was adequate but left them still searching for answers. Oftentimes they did not understand it—they did not have a full grasp of PCOS and what they needed to do to “get control.” For example, Abby’s physician recommended she lose weight because she was insulin resistant, but the physiological benefits of weight loss were not clear: “losing weight’s
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supposed to fix that . . . [but] I don’t understand how that’s going to automatically make it all go away.” Besides its association with diabetes, insulin resistance also contributes to ovulatory dysfunction. For obese and overweight women with PCOS, a small reduction in body weight by as little as 5% to 7% has been shown to decrease androgen levels enough to improve menstrual function and insulin sensitivity, thereby reducing their risk of developing diabetes (Hassan & Gordon, 2007). Information is necessary but not sufficient to improve health-related behavior. This is especially important for health care providers to realize in relation to the lifestyle modifications they recommend and to the practices adolescents must implement and maintain. Participants expressed the need for patient-focused guidance to help them be better informed in making decisions about their health. Toward that end, recognizing adolescence as a time of developing self-regulatory tendencies and skills, a manual-based, cognitive-behavioral intervention by Rofey et al. (2009) resulted in notable reductions in obesity and depression in their sample of adolescents with PCOS. Improvements in participants’ physical health measurements, depressive symptoms, and HQRL were achieved through eight, individual, weekly sessions and three family-based sessions, focusing on coping mechanisms, parent–adolescent dynamics, motivational concepts, increasing physical activity, and cognitive-restructuring techniques. This holistic, multifaceted approach is strongly in alignment with recommendations made by the young women in this study.
Limitations Limitations were imposed on this study by the use of purposive sampling and the recruitment strategy. By targeting college campuses to gain access to appropriate age groups, the findings from the purposive sample were neither random nor generalizable. The sample was relatively homogeneous demographically, especially in educational attainment. Given that all of the participants were attending college, all represented middleand upper-class incomes, and most were White, it is conceivable that different results would be found in a more heterogeneous sample of young women. Participants were not asked to provide documented proof of their diagnosis. The level of detail provided by all the young women was substantial
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The young women wanted more guidance and self-management support to help them make informed decisions about their health.
and accepted as evidence that individual participants met inclusion criteria. Some caution is in order regarding the possibility of recall bias because of the retrospective nature of some of the interview questions used in this study. Many of the participants had been diagnosed 3, 4, or as many as 7 years prior, and gaps could exist in recalling exact details about their thoughts and emotions around the time of their diagnosis. However, the data obtained through this methodology still proved advantageous in achieving the overall purpose of the study. The perspective gained through this research contributes to the contextual understanding of the experiences and perceptions of young women living with PCOS and may provide a foundation for further research, perhaps with girls with PCOS in their early teenage years.
Recommendations Results of this study suggest the need for health care professionals to further build on their commitment to fostering positive and supportive relationships with young women with PCOS in adolescence and early adulthood. Ideally, patient– provider interactions should address individual concerns of the patient and quality of life issues (Upadhya & Trent, 2007). To help ameliorate troubling symptoms that promote feelings of isolation, frustration, and anxiety, important linkages (e.g., between insulin resistance and physiological benefits of weight loss and increased physical activity) must be understood by the patient for them to not only become more knowledgeable about the syndrome, but also to feel empowered in making informed health care choices on their own behalf as they manage this chronic condition (Snyder, 2006). Based on the participants’ recommendations for additional guidance and support, it is conceivable (given the close association between PCOS and diabetes) that PCOS education measures could be incorporated into diabetes selfmanagement education classes and venues, with several components separately addressing PCOS issues. Within a campus setting, PCOS support groups such as those sponsored by student health services could increase the availability of
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interventions to reduce the distress adolescents and young adults face with the syndrome. Cognitive-behavioral interventions as described by Rofey et al. (2009) may prove to be a highly feasible and effective method of improving physiological and psychosocial functioning in adolescents with PCOS. Regardless of the approach, however, increasing the availability of interventions and avenues of support is crucial in setting the stage for young women to develop life-long healthy behaviors to help them self-manage the disorder as they face the attendant challenges in living with PCOS.
Elsenbruch, S., Benson, S., Hahn, S., Tan, S., Mann, K., Pleger, K., . . . Janssen, O. E. (2006). Determinants of emotional distress in women with polycystic ovary syndrome. Human Reproduction, 21 (4), 1092–1099. doi:10.1093/humrep/dei409 Erlandson, D. A., Harris, E. L., Skipper, B. L., & Allen, S. D. (1993). Doing naturalistic inquiry: A guide to methods. Newbury Park, CA: Sage. Hahn, S., Janssen, O. E., Tan, S., Pleger, K., Mann, K., Schedlowski, M., . . . Elsenbruch, S. (2005). Clinical and psychological correlates of quality-of-life in polycystic ovary syndrome. European Journal of Endocrinology, 153, 853–860. doi:10.1530/eje.1. 02024 Hassan, A., & Gordon, C. M. (2007). Polycystic ovary syndrome in adolescence. Current Opinion in Pediatrics, 19 (4), 389– 397. Himelein, M. J., & Thatcher, S. S. (2006). Polycystic ovary syndrome and
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