Experiences of women living with Polycystic Ovary Syndrome: A pilot case-control,  single-cycle, daily Menstrual Cycle Diary study during the SARS-CoV-2 pandemic

Kaitlin Nelson; Sonia Shirin; Dharani Kalidasan; Jerilynn C Prior

doi:10.1371/journal.pone.0296377

Menstrual Cycle · Cycle Disorders

Experiences of women living with Polycystic Ovary Syndrome: A pilot case-control, single-cycle, daily Menstrual Cycle Diary study during the SARS-CoV-2 pandemic

Nelson K, Shirin S, Kalidasan D, Prior JC

Published January 2, 2024 PloS One, 18(12), e0296377

DOI 10.1371/journal.pone.0296377 PMID 38157371 PMC PMC10756515

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RRM Academy Synopsis

Women with PCOS and month-apart cycles reported more outside stress

In a small pilot case-control study, women with PCOS reported more outside stress than matched controls. Eight women with PCOS and 24 controls kept daily diaries in Vancouver during the pandemic. All had roughly month-apart cycles. PCOS is now also called PMOS (polyendocrine metabolic ovarian syndrome).

Key Findings

Eight women with physician-diagnosed PCOS were matched 1:3 to 24 controls by age and BMI, drawn from 112 women in the Menstruation & Ovulation Study 2.
Outside Stresses scored higher with PCOS (3.4 ± 0.2 versus 3.0 ± 0.5 on a 1 to 5 scale, P = .020).
Feeling of Self-Worth (P = .471), Feeling of Anxiety (P = .174) and Feeling of Depression (P = .649) did not differ significantly between the groups.
Cycle length (P = .593) and luteal phase length (P = .167) did not differ significantly; enrollment required month-apart cycles. Ovulation could be assessed in 7 of 8 women with PCOS.
Anovulation (no ovulation) occurred in 5 of the 7 women with PCOS assessed and in 9 of 24 controls. The ovulation categories did not differ significantly (P = .341).

Interpretation

The authors call this a pilot case-control study: one menstrual cycle, one Vancouver cohort, highly educated women in their early 30s. Eight women with PCOS is a small sample, and the authors list it as a limitation. PCOS was self-reported as physician-diagnosed. Enrollment required approximately month-apart cycles and no hormonal contraception, so the authors think the women with PCOS were likely less symptomatic than most. They attribute the frequent ovulatory disturbances across the whole cohort to pandemic stress. A case-control comparison shows association only. The authors conclude that a larger study is needed.

RRM Context

Cycle lengths of 21 to 35 days did not settle whether ovulation occurred. Most women in both groups fell in that range, yet luteal phases were short or absent in many. Restorative reproductive medicine treats ovulation as the event to document, and daily temperature charting is a cycle-charting tool for doing so. The authors conclude that pairing charting with a daily diary is feasible in a community cohort.

Our editorial summary of this paper, not the article's abstract.

Abstract

Polycystic Ovary Syndrome (PCOS) affects many people and is often distressing. Much medical literature about diagnosis and treatment exists, but little is known about PCOS menstrual cycle-related experiences except that cycles tend to be far-apart and unpredictable. Our purpose was to examine the menstrual cycle and daily life experiences in those with PCOS having approximately month-apart cycles compared with age and BMI-matched cohort controls using data from the Menstruation & Ovulation Study 2 (MOS2) during the first 1.5 years of SARS-CoV-2 pandemic. We hypothesized that those with PCOS would experience lower self-worth and more negative moods. This is a single-cycle prospective case-control study in community-dwelling women ages 19-35 years. Eight reported physician-diagnosed PCOS and were matched (1:3 ratio) with controls by age (within .6 years) and BMI (within .19 BMI units). Experiences were recorded daily (Menstrual Cycle Diary©, Diary). All kept daily morning temperatures to assess luteal phase lengths by the validated Quantitative Basal Temperature© analysis method. From 112 in MOS2, 32 women were compared: eight with PCOS versus 24 controls. Demographic, socioeconomic, comorbidities and lifestyle variables were not different between the two groups. Cycle lengths were similar in PCOS and controls (one PCOS and control each had oligomenorrhea; most lengths were 21-35 days, P = .593). Unexpectedly, luteal phase lengths were also similar between PCOS and controls (P = .167); anovulation occurred in 5 with PCOS, and in 9 controls. There were no significant Diary differences between the two groups except for greater "outside stress" in the PCOS group (P = .020). In contrast to our hypotheses, there were no significant differences in feelings of self-worth, anxiety nor depression. The SARS-CoV-2 pandemic was a stressful time for women. MOS2 captured granular menstrual cycles, ovulation and daily experiences in women with PCOS compared with ageand BMI-matched controls. These pilot data in women with milder PCOS are the first of more research required to understand the daily experiences in those living with PCOS.

Topics

By this author

Luteal Phase · Luteal Phase Deficiency

The influence of the menstrual cycle on muscle injuries - a systematic review and meta-analysis

Guthardt Y et al., 2026 Sci Rep Free full text on PubMed Central

This systematic review and meta-analysis examined the relationship between menstrual cycle phases and the incidence of muscle injuries in female team sport athletes, following PRISMA 2020 and PERSiST guidelines. A comprehensive search was conducted in PubMed, Scopus, and SPORTDiscus from inception to mid-January 2024. Studies were included if they examined female team sport athletes of reproductive age with regular menstrual cycles and compared the occurrence of muscle injuries across at least two menstrual phases. Studies involving hormonal contraceptive use, medications affecting the menstrual cycle or musculoskeletal system, or menstrual dysfunction were excluded. Three studies met the inclusion criteria, involving 318 participants. Meta-analysis yielded a pooled Risk Ratio of 1.18 (95% CI: 0.75 to 1.86, p = 0.46) for injury risk between the luteal and follicular phases, suggesting no statistically significant association. However, the certainty of the cumulative evidence was rated as very low due to methodological limitations, including inconsistent phase classifications and reliance on imprecise methods for identifying menstrual phases. Consequently, no practical or clinical recommendations can be made at this time. Future research employing standardised, physiologically accurate methods for classifying and detecting menstrual cycle phases is necessary to better understand the potential links between hormonal fluctuations and injury risk.

Breast Health · Benign Breast Conditions

MON-154 Breast areolar diameter in healthy menstruating women—a single cycle cross-sectional study of associations with body size and ovulatory characteristics

Baaske AV et al., 2025 Journal of the Endocrine Society Free full text on PubMed Central

Tanner Breast Stage 3 (TB3, at menarche) and Tanner 5 (TB5, once ovulatory cycles established), despite being similar with an “upstanding” nipple, are different. Evidence suggests that steady and high ovulatory-level progesterone exposure accounts for the larger areolar diameter in TB5. Progesterone levels indicate whether the menstrual cycle is ovulatory and have crucial implications for women’s reproductive, metabolic, cardiovascular, and bone health. However, few data show average areolar diameter in regularly cycling women in whom SES, body size, and reproductive variables have been documented. As a step towards better understanding the role of areolar diameter in reflecting estradiol-progesterone balance, this study aims to document the average mean bilateral lateral areolar diameter (AD) in a cohort of regularly menstruating, premenopausal women in whom ovulation was documented in one cycle. We also aim to describe relationships between AD and demographic, anthropometric, and reproductive/ovulation variables. Women were eligible if aged 19-35 years with about month-apart cycles and no exogenous hormone use in the last 3-months. Participants completed one cycle with a daily Menstrual Cycle Diary© (cycle length, CL) and first morning temperatures for Quantitative Basal Temperature© (QBT©) ovulation analysis (normal luteal phase length ≥10 days). Questionnaires gathered SES, ethnic, general health, and reproductive characteristics. Bilateral horizontal areolar diameters were measured by a woman researcher with the participant supine in a warm room. From February 2020 to September 2022 (during the SARS-CoV-2 pandemic), 73 women from Metro Vancouver, British Columbia participated. Women were of median (min-max) age 30 (19-35) years, BMI 24.5 (17.1-41.4) and most identified as White (61.6%) with a median of 16 years of education. Median CL was 29 days (n=65) and QBT data showed 39.3% were normally ovulatory, 34.4% had short luteal phases and 26.2% were anovulatory. Median within-woman bilateral AD was 3.85 (2.35-8.00) cm. Left AD exceeded right (L 3.8 [2.3,8.2]; R 3.7 [ 2.4,7.8]; P=.003). Larger AD (≥3.85cm) was associated with greater body size (BMI r=.534), weight and waist circumference. However, earlier age at menarche (P=.02) was also significantly associated. No other reproductive variables (cycle length, luteal phase length, parity, ever use of CHC) were related to AD before body size adjustments. This study is the first to document, and describe demographic, anthropomorphic and reproductive associations with, AD in community dwelling, regularly cycling, premenopausal women. Future steps will determine the most influential of the anthropometric variables; adjustment for these will facilitate assessments of associations with ovulation related characteristics.

Breast Health · Benign Breast Conditions

SAT-128 Prospective 1-year Menstrual CycleBreast Tenderness and Swelling Experiences—data from healthy regularly cycling women initially proven normally ovulatory on two consecutive cycles

Wood M et al., 2025 Journal of the Endocrine Society Free full text on PubMed Central

Breast tenderness and swelling are associated with premenstrual symptoms but have not been well described in healthy, normally cycling women with known ovulatory status. There are documented negative health risks (in bone, the cardiovascular system and cancers) in association with ovulatory disturbances within normal-length cycles. Identifying breast changes across a predictable, month-apart cycle but with Subclinical Ovulatory Disturbances (SOD, short luteal phase [<10 days] and anovulation (with normal estradiol but lower or absent progesterone levels) could advance our understanding of menstrual cycle physiology, women’s health education and identification of those with chronic SOD who may benefit from cyclic progesterone therapy. Our objective was to determine whether within-woman breast tenderness and swelling experiences differed between normally ovulatory and ovulatory-disturbed cycles. In this 1-year prospective observational study, we examined daily breast tenderness (0-4) and swelling (1-5 change from usual = 3) experiences recorded via the Menstrual Cycle Diary© over ≥8 cycles (mean=13/woman) in 53 women. Ovulatory status was documented by the twice-validated Quantitative Basal Temperature© (QBT©) analysis. Cycle and ovulatory data were previously reported (Prior NEJM, 1990); Diary data were unreported. Participants were healthy, community-dwelling women, mean age 34 (32.4:35.5 years), BMI 22.0, primarily White, and about two-thirds were runners (for health or were marathon-training). Comparison of breast parameters in all normally ovulatory (n = 495) vs all SOD cycles (n = 199) (mean cycle length 28.1 [27.5-28.8 days]), showed significantly higher Breast Tenderness Score [intensity X days; 6.0 (range 1.0, 14.0) vs. 3.0 (0.0, 11.0) (P = .001)] and increased breast size [4.0 (2.0, 4.0) vs. 4.0 (0.0, 4.0) (P = .034]) in normally ovulatory cycles. However, in within-woman analysis (n = 47 women with both normally ovulatory and SOD cycles), breast tenderness/swelling did not significantly differ by ovulatory status. We plotted all ovulatory cycles (n=676) centred on ovulation; this revealed parallel timing of increases in breast tenderness and swelling in the late luteal phase. These 1-year prospective data documented that mild breast tenderness and swelling occurred before flow in cycles with normal ovulation; symptoms were less in SOD cycles. Breast changes were totally absent during the follicular phases.

Hormonal Agents · Progesterone and Progestins

"SUN-109 Feasibility of Cyclic Progesterone and Spironolactone for PCOS-specific Health-Related Quality of Life—a six-month, Phase II, single arm, single center, open-label study"

Nelson K et al., 2025 J Endocr Soc Free full text on PubMed Central

Polycystic ovary syndrome (PCOS) is an endocrine-metabolic disorder that significantly decreases health-related quality of life (HRQoL). Combined hormonal contraceptives (CHC) are standard-of-care for PCOS but do not mitigate the neuroendocrine cause nor women’s primary concerns. Treatment options need expansion. We hypothesized cyclic oral micronized progesterone (CyclicP4) and spironolactone (Sp) would improve HRQoL, decrease LH, and acne. This Phase II, open-label single-arm pilot study evaluated the 6-month cyclicP4 and Sp treatment feasibility and safety in androgenic PCOS. Our primary outcome was within-woman change in PCOS-HRQoL (PCOSQ). No sample size calculation was possible; 40 was considered feasible. Eligible women were 19-40 years with physician-diagnosed androgenic PCOS. Exclusion criteria included HbA1c > 6.4%, use of metformin or CHC in the last month. Participants received progesterone (300 mg/bedtime 14 days/month); spironolactone (200 mg/day) began in cycle two. Adherence was tracked daily (Menstrual Cycle Diary©) and by pill counts. Safety was assessed by post-study potassium (K+). Feasibility by women’s post-trial treatment intention. PCOSQ, serum LH, calculated bioavailable testosterone (cBAT), HbA1c, hsCRP, and AMH were measured at baseline and trial end. We also assessed perceived acne and sleep changes (-5 to +5), K+ and therapy intent at study end. Six-month change by paired t-test or Wilcoxon signed-rank assessed P < .05 as important. Of 109 expressing interest, 41 enrolled, 36 began therapy (5 did not), and 26 provided final questionnaire data (19 with complete lab data). Completing women were mean age 29 (SD 4.9) years, BMI 30.3 (8.1), 61.5% White and 73.1% with university degrees. Total PCOSQ scores within-woman increased from 3.5±1.0 to 4.9±1.1 (95% CI 3.1-3.8, 4.6-5.3; P<.0000001). Each PCOSQ domain significantly improved (at least P<.001) as did acne and sleep. Weight was unchanged but waist circumference decreased 1.1 cm (NS). LH, cBAT, and AMH each decreased: LH 10.0±5.4 to 8.5±5.2 IU/L (95% CI 7.6-12.3, 6.3-10.8; P<.4), cBAT 0.7±0.4 to 0.6±0.3 nmol/L (0.5-0.9, 0.5-0.8; P<.2), and AMH 10.5±6.5 to 9.7±5.7 ng/ml (7.4-13.7, 7.0-12.4; P<.4). hsCRP remained unchanged (2.8±3.3 to 2.7±3.6 mg/L; P<.8) as did HbA1c (5.2±0.3 to 5.2±0.3%; P<.0). K+ remained within the normal range (3.5-5.0 mmol/L) at final testing (mean 4.0). Two allergic responses to spironolactone and one frequent flow/religious practice led to discontinuation. Feasibility was confirmed and participants strongly preferred continuing therapy (median Likert score=6/7, P<.0001) CyclicP4 and Sp for 6-months was feasible and significantly improved HRQoL in a non-medicine-seeking community women cohort with androgenic PCOS. Though the small sample size limited generalizability, findings are promising. A larger randomized trial comparing CyclicP4 vs. CHC is warranted.

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Cycle Disorders · Dysmenorrhea

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Mann G et al., 2024 J Pain Res Free full text on PubMed Central

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Ovarian Hormones · Androgens

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Gibson-Helm M et al., 2016 J Clin Endocrinol Metab Free full text on PubMed Central

Polycystic ovary syndrome (PCOS) is a complex, chronic, and under-recognized disorder. Diagnosis experience may have lasting effects on well-being and self-management. To investigate PCOS diagnosis experiences, information provided, and concerns about PCOS. Cross-sectional study using an online questionnaire. Recruitment via support group web sites in 2015 to 2016. There were 1385 women with a reported diagnosis of PCOS who were living in North America (53.0%), Europe (42.2%), or other world regions (4.9%); of these, 64.8% were 18 to 35 years of age. Satisfaction with PCOS diagnosis experience, satisfaction with PCOS information received at the time of diagnosis, and current concerns about PCOS. One-third or more of women reported >2 years (33.6%) and ≥3 health professionals (47.1%) before a diagnosis was established. Few were satisfied with their diagnosis experience (35.2%) or with the information they received (15.6%). Satisfaction with information received was positively associated with diagnosis satisfaction [odds ratio (OR), 7.0; 95% confidence interval (CI), 4.9 to 9.9]; seeing ≥5 health professionals (OR, 0.5; 95% CI, 0.3 to 0.8) and longer time to diagnosis (>2 years; OR, 0.4; 95% CI, 0.3 to 0.6) were negatively associated with diagnosis satisfaction (independent of time since diagnosis, age, and world region). Women's most common concerns were difficulty losing weight (53.6%), irregular menstrual cycles (50.8%), and infertility (44.5%). In the largest study of PCOS diagnosis experiences, many women reported delayed diagnosis and inadequate information. These gaps in early diagnosis, education, and support are clear opportunities for improving patient experience.

MON-LB042 Health-Related Quality of Life in Women with Polycystic Ovary Syndrome/Anovulatory Androgen Excess versus Local Population-Based Control Women (from the British Columbia Canadian Multicentre Osteoporosis Study [BC CaMos])

Liang B et al., 2019 J Endocr Soc Free full text on PubMed Central

Polycystic Ovary Syndrome (PCOS) affects 5-20% of reproductive-aged women and is associated with lower Health-Related Quality of Life (HRQoL)1,2,3. HRQoL in PCOS, however, is often determined in small or clinical samples with no or convenience sample controls. Our aim was to cross-sectionally compare generic SF-36 HRQoL results in community dwelling, physician-diagnosed women with PCOS to randomly selected age-similar local women. Women with PCOS/AAE had enrolled in two local studies (n = 93)4, and were eligible if they were non-menopausal and had PCOS based on Androgen Excess/PCOS Society criteria. Eligibility in both groups required age ≤53 years and, for controls, menstruation in the last year. Control women were from both Adult and Youth BC CaMos cohorts (n = 56). All completed the interviewer-administered CaMos questionnaire5. Statistical analysis used descriptive, T-test and multiple regression to explore relationships among HRQoL domains/component scores versus demographic, anthropomorphic and comorbid condition variables, particularly body mass index (BMI), physical activity patterns and combined hormonal contraceptive (CHC) usage. We compared SF-36 data in pre/perimenopausal women mean aged 34.5±10.0 (SD) years, BMI 27.5±7.5. After controlling for BMI, education, comorbidities and past use of CHC, all HRQoL domain and component scores were significantly lower in women with PCOS then in controls. Domain score differences of 5 are clinically important; PCOS women scored -5.8 to -19.9 points lower (mean -11.6) with the greatest difference for Emotional Role. The Physical Component summary score was -2.2 and the Mental Component summary -7.2 lower in women with PCOS compared with population-based controls; score differences of 2-3 are considered clinically important. In both groups, participation in regular exercise was the strongest predictor of higher overall HRQoL. In both cohorts, comorbidity negatively predicted the physical component score (PCS) of HRQoL; PCOS status negatively predicted the mental component score of HRQoL. PCS group differences became less significant as BMI increased, but MCS remained significantly different. This first comparison of the validated, generic SF-36 in pre/perimenopausal population-based versus women with PCOS documented highly significantly lower scores in women with PCOS on all domains and both components. These data confirm evidence that participation in regular exercise is related to better overall HRQoL in PCOS. Also, obesity in women with PCOS, in contrast to controls, was not associated with the overall HRQoL. We also found that CHC was associated with general health, mental health and mental component scores in women with PCOS. Ref.1Prior JCEM 2014; 2Alvarez-Blasco Clin Endo 2010; 3Azziz Fertil Steril 2009; 4Kalyan Sci Reports 2017; 5Kreiger Can J. Aging 1999. Unless otherwise noted, all abstracts presented at ENDO are embargoed until the date and time of presentation. For oral presentations, the abstracts are embargoed until the session begins. Abstracts presented at a news conference are embargoed until the date and time of the news conference. The Endocrine Society reserves the right to lift the embargo on specific abstracts that are selected for promotion prior to or during ENDO.

Ovarian Hormones · Progesterone

Cyclic Progesterone Therapy in Androgenic Polycystic Ovary Syndrome (PCOS)-A 6-Month Pilot Study of a Single Woman's Experience Changes

Shirin S et al., 2021 Medicina (Kaunas) Free full text on PubMed Central

Women with androgenic Polycystic Ovary Syndrome (PCOS) have increased endometrial cancer risk that cyclic progesterone will prevent; it may also reverse PCOS's neuroendocrine origins. This pilot study's purpose was to document 6-month experience changes in a woman with PCOS taking cyclic progesterone therapy because she was intolerant of combined hormonal contraceptive therapy, the current PCOS standard of care. A 31-year-old normal-weight woman with PCOS had heavy flow, irregular cycles, and was combined hormonal contraceptives-intolerant. She was prescribed cyclic oral micronized progesterone (OMP) (300 mg/h.s. cycle days 14-27). She kept Menstrual Cycle Diary© (Diary) records, starting with the 1st treatment cycle for six cycles; she was on no other therapy. Statistical analysis a priori hypothesized progesterone decreases high estradiol (E2) experiences (flow, cervical mucus, fluid retention, front-of-the-breast tenderness and anxiety); analysis focused on these. Our (1) changes from cycles 1 to 6 in E2-related experiences; and (2) follicular phase E2-related changes from cycle 1 (no therapy) to cycles 3 and 6. Data from consecutive Diaries were entered into an SPSS database and analyzed by Wilcoxon Signed Rank Test (Objective #1) within-person whole cycle ordinal data, and (Objective #2 follicular phase) repeated measures ANOVA. Cyclic OMP was associated with regular, shorter cycles (±SD) (28.2 ± 0.8 days). Comparison of cycles 1-6 showed decreased fluid retention (p = 0.001), breast tenderness (p = 0.002), and cervical mucus (p = 0.048); there were no changes in flow or anxiety. Fluid retention in the follicular phase also significantly decreased over time (F (1.2, 14.7) = 6.7, p = 0.017). Pilot daily Diary data suggest women with PCOS have improved everyday experiences on cyclic progesterone therapy. Larger prospective studies with more objective outcomes and randomized controlled trials of this innovative PCOS therapy are needed.

Menstrual Cycle › Cycle Disorders › Ovulatory Disturbances · Reproductive Endocrinology › Luteal Phase › Luteal Phase Deficiency · Mental Health and Psychosocial Care › Mood and the Cycle › Cyclical Mood Symptoms

Kaitlin Nelson, Sonia Shirin, Dharani Kalidasan, Jerilynn C Prior

K Nelson, S Shirin, D Kalidasan, J Prior

PMID 38157371 38157371 DOI 10.1371/journal.pone.0296377 10.1371/journal.pone.0296377 Nelson et al. 2024, Nelson 2024

Cite this article

Nelson, K., Shirin, S., Kalidasan, D., & Prior, J. C. (2023). Experiences of women living with Polycystic Ovary Syndrome: A pilot case-control, single-cycle, daily Menstrual Cycle Diary study during the SARS-CoV-2 pandemic. PloS one, 18(12), e0296377. https://doi.org/10.1371/journal.pone.0296377

Keywords

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