This paper describes the experiences of women with PCOS in managing their weight, and their perceived facilitators and barriers in lifestyle modification for weight loss. We found that women with PCOS were generally experienced in attempting weight loss but had difficulties losing weight and preventing weight regain. Facilitators to lifestyle modification for weight management were reported as structured approaches such as having balanced meals and support by health professionals, peers, friends or family. Barriers to lifestyle changes in women with PCOS included logistical barriers such as time and cost, motivational barriers including tiredness or feeling unrewarded, environmental barriers such as not having access to safe places to exercise, emotional barriers such as having depressive and defeating thoughts, and relational barriers such as having unsupportive partner or prioritising children’s meal preferences. While many of these are also experienced by women without PCOS, some barriers such as tiredness and emotional barriers may be exacerbated by the presence of PCOS.
Impact of PCOS on weight
Women with PCOS believed PCOS deters weight loss and predisposes them to regain weight following weight loss. As a result, weight cycling was a common experience in women with PCOS in the current study. Difficulty losing weight, weight cycling and unexplained weight gain were also reported by other women with PCOS in previous studies [
8,
27‐
29]. This was further supported by a longitudinal study which also found women with PCOS having greater weight gain than age-matched women without PCOS [
13]. The physiological basis supporting greater weight gain in PCOS is unclear. This may be related to the greater energy intake and lower physical activity in women with PCOS [
21]. The slightly higher dietary intake may be due to dysfunction in appetite regulation as women with PCOS had impaired levels of appetite hormones such as cholecystokinin and ghrelin [
30,
31]. Apart from these behavioural factors with possible upstream causes, women with PCOS do not appear to have a metabolic basis for being more resistant to weight loss [
20]. Weight regain following weight loss can have a detrimental effect on the mental well-being of women with PCOS including feelings of guilt, low self-esteem and poor self-image [
8,
28,
29]. These can further erode the motivation to maintain efforts to manage weight, preventing recovery from the relapse.
Past weight loss attempts
We also found that women with PCOS have a broad range of experience in weight management, including diet and exercise, medication and alternative therapies. This is consistent with a previous study which found that women with PCOS engaged in a wide range of weight management practices and were more likely to attempt most of the practices compared with women without PCOS [
32]. However, most of these attempts appeared to be self-initiated with very little or no support by health professionals [
33,
34]. The involvement of a dietitian is unlikely according to the low referral rate of PCOS patient to dietitians, resulting in women with PCOS seeking alternative sources of advice and support for lifestyle modification [
34,
35]. It is known that certain behaviour change techniques are essential for successful lifestyle modification [
36]. These techniques are unlikely to be consistently applied without constant monitoring and feedback. This may explain the lack of success and frustration observed in the self-initiated, unsupported weight loss attempts in women with PCOS.
Facilitators and barriers to lifestyle modifications
The facilitators to lifestyle modifications reported by women with PCOS in the current study are similar to that reported by women without PCOS in previous studies [
37,
38]. In the current study, women with PCOS reported that structured approaches such as having a balanced meal or a bigger breakfast were helpful in their weight loss attempts. The previous study in young women without PCOS similarly found that structured dietary advice (e.g. structured meal plan with specified portion sizes) were more effective in weight loss when compared to qualitative advice (e.g. “reduce fat intake”) [
37]. In addition to specific dietary strategies, women in the current study identified that accountability and peer support as a facilitator. These were also reported by young women without PCOS in previous studies [
38,
39]. However, women without PCOS have also previously reported perceiving the lifestyle changes as enjoyable and fun, indicating intrinsic motivation for their efforts [
39]. This was not reported by the women in the current study, in whom lifestyle modifications were only perceived as a means of weight loss, which represents an extrinsic motivation in the form of an external reward. Intrinsic motivation such as the enjoyment of the activity has been associated with long term weight loss maintenance [
40], and the lack of this facilitating factor in women with PCOS may explain their lack of long term success with any strategy for weight management.
Women in the current study reported a range of barriers to lifestyle modification. Most of these barriers were also reported by young women without PCOS, with the key barriers being work commitments, time, cost and difficulty with children [
22,
29,
41‐
43]. Personal barriers such as disliking the taste of certain foods were also similar across women with and without PCOS in current and previous studies [
41,
44]. Environmental barriers such as not having access to opportunities for physical activity were reported as one of the barriers in women of the current study and in young women without PCOS in other studies [
39,
41]. Having an unsupportive partner, as cited by women in the current study, was similarly identified as a barrier by women without PCOS [
41,
44,
45]. Considering the similarities in barriers between young women with and without PCOS, these barriers to lifestyle modifications in women with PCOS may be related to their life-stage more so than PCOS itself.
Certain barriers to lifestyle changes were unique to women with PCOS. Women with PCOS in the current study reported tiredness as a barrier to lifestyle medication. Feelings of tiredness and fatigue have been previously described as one of the experiences of living with PCOS [
8,
22,
29]. It is unclear if this was relating to the mental-burden of dealing with PCOS symptoms, as women with PCOS have previously reported intense pre-occupation with certain symptoms such as hirsutism or menstrual irregularity that led to an inability to plan and problem-solve [
8]. Women in the current study also felt embarrassed to exercise at the gym or outdoors. Although overweight or obese women without PCOS have also cited feeling embarrassed as a barrier to exercise [
45], evidence suggests that women with PCOS have greater body dissatisfaction than women without PCOS [
6]. These feelings of inadequacy were confirmed by previous studies in women with PCOS which reported feelings of low self-confidence, self-worth and self-esteem; feelings of being inferior and abnormal compared with peers and feelings of hopelessness [
6,
8,
9,
28,
29]. Adding to these negative self-assessments are the prevalent depressive or negative thoughts, which were cited as a barrier to maintain lifestyle efforts in the current study. This is consistent with previous studies reporting higher depression scores in women with PCOS [
6,
9]. This overall negative outlook is also consistent with the lower perceived quality of life experienced by women with PCOS [
5,
7,
8]. As self-efficacy is an important predictor of lifestyle behaviour particularly in women with higher BMI [
46,
47], the low sense of agency over health in women with PCOS could be detrimental to the long term maintenance of lifestyle behaviours.
The main strength of this study is the description of facilitators and barriers to lifestyle modification for weight management in women with PCOS. To our knowledge, this is the first study exploring this in an in-depth manner, with the only other qualitative study in lifestyle barriers and facilitators exploring the experience of women with PCOS on a commercial very-low-calorie diet [
29]. This study was conducted and reported according to the Consolidated criteria for reporting qualitative studies (COREQ) guidelines [
48] which ensures sound and logical conduct of the research process that contributes to dependability. Data source triangulation and independent coding by several reviewers enhances credibility of the findings. Participants characteristics were provided to assist readers to decide on transferability of the findings to other populations and direct quotes are provided to illustrate the themes. Interviewers’ and focus group facilitator’s characteristic were described to address reflexivity.
The current study has several limitations. First, the sample size is small, including one focus group which contained two participants. However thematic saturation was achieved in the overall sample and the themes were agreed upon by two reviewers, providing support for internal consistency. Additionally, the use of data source triangulation (focus group and interview data) allowed us to gain broader perspectives on the topic and enhances the credibility of the study.
Second, the interviews were conducted in English without the presence of interpreters, which limited our ability to capture the experiences of those who do not speak English. The findings of this paper should be considered with these limitations in mind.