A systematic review of lived experiences of people with polycystic ovary syndrome highlights the need for holistic care and co-creation of educational resources.

Introduction: PCOS-related literature is mostly dominated by the medical perspective. However, the condition's lifelong, far reaching, and multifaceted impacts highlight the importance to gain the perspectives from those with PCOS. Therefore, we performed a systematic review to explore the current literatures and gaps around the experiences and perceptions of those living with PCOS. Method: A comprehensive search of seven electronic databases was conducted between July and October 2021. A total 34 from 1615 screened articles were included in this systematic review and subsequently coded using NVivo 12 software. The quality of individual studies was assessed by adaptation to the Critical Appraisal Skills Program (CASP) quality assessment tool. Results: Five domains were generated from the data: Signs/Symptoms, Diagnosis, Management, Perceptions, Resources and Improving Outcomes. Dissatisfaction surrounding the experience of diagnosis was common. Concerns surrounded perceived lack of knowledge from healthcare professionals and delays in diagnosis. Individual studies on adults and adolescents shared similar feelings. The consensus was found to be that current management was vague and generalised. Symptoms such as hirsutism, obesity, irregular menstruation challenge personal and societal expectations of femininity. Online PCOS resources are popular amongst those with PCOS but most of them lack evidence. A call for more culturally specific resources was found to be common ground amongst those with PCOS. Conclusion: Overall dissatisfaction amongst adults and adolescents regarding their diagnostic journey of PCOS. Tailored and culturally specific PCOS advice and management is necessary and can be achieved through co-creation of resources between healthcare professionals and those with PCOS. Systematic review registration: https://www.crd.york.ac.uk/prospero/, identifier CRD42021272371.

Menstrual disorders in adolescents and young adults with eating disorders.

Although amenorrhea is no longer a specific criterion required to make the diagnosis of anorexia nervosa (AN), the relationship between restrictive eating and menstrual status remains important in the diagnosis, treatment, and consequences for patients with eating disorders. Clinicians should understand the relationship between menstrual irregularities and malnutrition due to eating disorders, as it may be possible to intervene sooner if the diagnosis is made earlier. Treatment of AN (in those who are underweight) and atypical AN (in those who are not underweight) is aimed at cessation of restrictive thoughts and behaviors, restoration of appropriate nutrition and weight, and normal functioning of the body. While eating disorder thoughts and behaviors are helped by both therapy and nutrition, regular functioning of the body, including regular menstruation, is linked to both appropriate nutrition and weight. Patients who are not underweight based on their body mass index (BMI) may still have oligo/amenorrhea due to their caloric restriction; thus any patient who has irregular menses should have a detailed dietary evaluation as part of their workup. Timely diagnosis and treatment of patients with eating disorders and amenorrhea is important due to the impact on bone mass accrual for adolescents who have prolonged amenorrhea. Menstrual abnormalities may also be seen in patients with bulimia nervosa (BN).

Hypomenorrhea in Adolescents and Youths: Normal Variant or Menstrual Disorder? Revision of Literature and Personal Experience.

Menstrual health affects a large number of women throughout reproductive life since adolescence. Knowledge of the duration and variation of the menstrual cycle is necessary for patient education and to identify deviations from normal  to guide clinical evaluation. The average duration of menstrual flow is between 4 to 6 days, with anormal range from 2 up to 8 days ; the mean blood loss per menstrual cycle is 25- 30 mL. In general, descriptive data falling outside the normal range are considered to be indicative of menstrual disorders. Although the American Academy of Pediatrics and American College of Obstetricians and Gynecologists advocate for clinicians to consider the menstrual cycle as a vital sign in adolescents, the identification of subjects with hypomenorrhea is neither well defined nor routinely practiced. In this paper we have summarized the published prevalence of hypomenorrhea (lighter and/or shorter menstrual bleeding) in adolescents and youths in different countries and report the personal experience in four adolescents.

Hyperandrogenism and menstrual imbalance are the best predictors of metformin response in PCOS patients.

BACKGROUND: Moving from the correlation between insulin-resistance and PCOS, metformin has been administered in some PCOS women improving ovulatory and metabolic functions and decreasing androgen levels. Inconsistency and unpredictability of response to metformin limit its extensive use. Aim of this study was to identify reliable predictors of response to metformin therapy for weight loss and reduction in plasma androgen levels using ANNs (artificial neural networks). METHODS: One hundred eight consecutive women with PCOS (ESHRE/ASRM 2003 Rotterdam criteria) treated with metformin 1500 mg/day, at inclusion and every 6 months underwent to a complete clinical, endocrine/metabolic assessment and ultrasonographic evaluation. Therapy outcomes were BMI reduction (≥1 kg/m2) in overweight/obese and free-androgen-index (FAI) decrease (≥1%) in hyperandrogenemic women. Semantic connectivity maps (SCMs) were obtained through Auto-CM, a fourth generation ANN, to compare patients' baseline clinical features to the treatment outcomes. Multivariate logistic regression analysis was used to assess the major predictor in drop-out patients and the associated risk. RESULTS: At 6 months 54 out of 103 (52,4%) obese patients showed BMI reduction and 45 out of 89 (50,6%) hyperandrogenemic women showed FAI decrease. The further response rates at 12 months were 30,6 and 47%, respectively. SCMs showed a clear polarization for both the outcomes with elevated accuracy. Treatment responsiveness resulted strictly related to oligo-amenorrhea and hyperandrogenemia at baseline. In addition, lower serum testosterone levels at baseline were found to be the major predictor of treatment discontinuation. CONCLUSIONS: In women with PCOS, menstrual pattern imbalance and ovarian androgens excess are the best predictors of metformin response. They may pave the way for a rethinking of the criteria for evaluating hyperandrogenism in order to better define the large population included in the diagnosis of PCOS. Baseline plasma testosterone level can serve as a sensitive marker to predict treatment compliance.

The Menstrual Disorder of Teenagers (MDOT) Study No. 2: Period ImPact and Pain Assessment (PIPPA) Tool Validation in a Large Population-Based Cross-Sectional Study of Australian Teenagers.

STUDY OBJECTIVE: To validate the Period ImPact and Pain Assessment (PIPPA) self-screening tool for menstrual disturbance in teenagers. DESIGN: Cross-sectional study. SETTING: Three senior high schools in the Australian Capital Territory (ACT), Australia. PARTICIPANTS: A total of 1066 girls between 15 and 19 years of age. INTERVENTIONS AND MAIN OUTCOME MEASURES: A quantitative paper survey collected self-reports of menstrual bleeding patterns, typical and atypical symptoms, morbidities, and interference with daily activities. Multiple correspondence analysis was used to examine associations between PIPPA questions. Generalized linear models compared total score and subscores by validation criteria: pain, school absence, and body mass index (BMI). Receiver operating characteristic curves were used to evaluate the predictiveness of menstrual disturbance indicators by total PIPPA score. RESULTS: Reports of pain, interference, and concern within the PIPPA items and between both the MDOT and PIPPA questionnaires were significantly correlated (P < .0001). The indicator "missing school" was highly associated (P < .0001) with pain and interference. Obesity (BMI ≥30) was associated with higher PIPPA scores, as was underweight (BMI≤18.4). Where 0 = no disturbance, 5 = high disturbance, aggregated PIPPA scores found 75% scoring 0-2 (out of 5) and 25% scoring 3-5 (257/1037). High scores of 4 or 5 (out of 5) were 7% (72/1037) and 3.7% (38/1037), respectively. CONCLUSION: PIPPA is a valid screening tool for pain-related menstrual disturbance that affects functioning in young women. PIPPA subdomains of pain/interference have good validity relative to indicators of pain and interference and are responsive to age, BMI, and school absence differences.

Menstrual Disorders Related to Eating Disorders.

Eating Disorders (ED) are associated with multiple physical complications that strongly affect the physical health of these young and fragile patients and can also cause significant mortality, the highest among psychiatric pathologies. Among the various organic complications, albeit still little known, the gynecological implications, up to infertility, are very widespread. Both among adolescent and adult patients, gynecological symptoms can be very widespread and range from menstrual irregularities to amenorrhea, from vaginitis to ovarian polycystosis, up to complications during the gestational phase and in postpartum, in addition to the possible consequences on the unborn child. Among the most frequent and significant gynecological disorders in women with ED, there are menstrual irregularities that may occur with oligomenorrhea or even amenorrhea. This symptom, although no longer part of the DSM-5 diagnostic criteria for defining Anorexia Nervosa (AN), must be considered a very relevant event in the overall evaluation of young women and adolescents with eating disorders. Functional Hypothalamic Amenorrhea in ED patients is related to psychological distress, excessive exercise, disordered eating, or a combination of these factors which results in suppression of the hypothalamic- pituitary-ovarian axis, resulting in hypoestrogenism. The objective of this paper is to summarize the causes and the mechanism underlying the menstrual disorders and to provide a better understanding of the correlation between the reproductive system and the mechanisms that regulate food intake and eating habits. In addition, early recognition of risk factors for eating disorders for gynecological implications can help put more accurate assessments of patients to prevent potentially fatal complications. The importance of the involvement of specialist gynecologists in the multidisciplinary team that has to follow patients with eating disorders is also discussed.

Menstrual irregularity as a biological limit to early pregnancy awareness.

US state legislatures have proposed laws to prohibit abortion once the earliest embryonic electrical activity is detectable (fetal "heartbeat"). On average, this occurs roughly 6 wk after the last menstrual period. To be eligible for abortion, people must recognize pregnancy very early in gestation. The earliest symptom of pregnancy is a missed period, and irregular menstrual cycles-which occur frequently-can delay pregnancy detection past the point of fetal cardiac activity. In our analysis of 1.6 million prospectively recorded menstrual cycles, cycle irregularity was more common among young women, Hispanic women, and women with common health conditions, such as diabetes and polycystic ovary syndrome. These groups face physiological limitations in detecting pregnancy before fetal cardiac activity. Restriction of abortion this early in gestation differentially affects specific population subgroups, for reasons outside of individual control.

Menstrual patterns and disorders among Chinese women of reproductive age: A cross-sectional study based on mobile application data.

ABSTRACT: Menstruation is an important indicator of women's health. Identification of abnormal menstrual patterns in adolescence may improve early diagnosis of potential health concerns in adulthood. This study aimed to evaluate menstrual patterns and disorders of Chinese women of reproductive age based on an APP.From December 2015 to January 2016, a cross-sectional study was conducted. We utilized a mobile application (APP) to collect information about participants' age at menarche, length of menstruation, duration of menstruation, amount of menstrual flow, regularity of menstrual cycle, prevalence of abnormal uterine bleeding and dysmenorrhoea.A total of 156,055 women (25,716 from the questionnaire survey and 130,000 from the mobile APP users) participated in the study. The average age of the subjects was 26.32 ±â€Š6.97 years (median age, 25 years). Mean age at menarche was 13.08 ±â€Š1.87 years; average length of menstrual cycle, 30.9 ±â€Š4.28 days (median 30 days); and average duration of menstruation, 5.01 ±â€Š1.13 days (median 5 days). Women with irregular menstrual cycles accounted for 36.41%. Women aged < 18 years and > 30 years were more likely to experience irregular menstrual cycles. The prevalence of secondary amenorrhoea was 4.07%. More than 20% of women reported abnormal menstrual flow. About 20.11% of women had abnormal uterine bleeding, and 77.65% had dysmenorrhoea. A hot compress was the most commonly used approach to ameliorate dysmenorrhoea. Women with low education and low income and those with high education and high income tended to have menstrual problems.A mobile APP as a survey tool has the advantages of large sample size, low cost, and high efficiency. The use of a mobile APP is an emerging approach for collecting big data in the field of health research. The results showed that the prevalence of menstrual disorders among Chinese reproductive women was high. Healthcare providers should educate girls and their caregivers about menstrual physiology, normal menstrual pattern, and reproductive health to prevent long-term diseases.

Imperforate hymen mimicking acute appendicitis in an adolescent woman: a rare presentation.

Imperforate hymen is a rare congenital malformation of the female genital tract. The condition poses several diagnostic challenges owing to its low incidence and often atypical presentation. Classical symptoms include amenorrhoea and cyclical abdominal pain. Delayed diagnosis leads to potentially irreversible and lifechanging sequelae including infertility, endometriosis and renal failure. A premenarchal 13-year-old girl with a background of chronic constipation presented with symptoms mimicking acute appendicitis. The underlying cause was imperforate hymen and retrograde menstruation. The diagnosis was made during diagnostic laparoscopy. As with this patient, pre-existing symptoms are often troublesome long before the true diagnosis is made. This case report highlights the importance of recognising imperforate hymen as a potential cause of acute abdominal pain in premenarchal adolescent girls. The clinical picture may present as right or left iliac fossa pain. Early identification reduces the risk of adverse complications and avoids unnecessary and potentially harmful interventions.

Menstrual dysfunction in polycystic ovary syndrome: association with dynamic state insulin resistance rather than hyperandrogenism.

OBJECTIVE: To examine the relation of menstrual cyclicity abnormalities to hyperandrogenism (HA) and dynamic state insulin resistance (IR) in oligo-ovulatory women with polycystic ovary syndrome (PCOS). DESIGN: Prospective cross-sectional study. SETTING: Tertiary-care academic center. PATIENT(S): Fifty-seven women with PCOS (1990 National Institutes of Health criteria) and 57 healthy control women matched by body mass index (BMI). INTERVENTION(S): Short insulin tolerance test (ITT). MAIN OUTCOME MEASURE(S): Menstrual cyclicity, sex hormone-binding globulin (SHBG), measures of HA (i.e., modified Ferriman-Gallwey score, total and free testosterone, dehydroepiandrosterone sulfate), and the rate constant for plasma glucose disappearance (kITT) derived from the short ITT. RESULT(S): Adjusting for age, BMI, and ethnicity, the mean androgen measures were higher and SHBG trended lower, kITT was lower, and the prevalence of IR was higher in PCOS than in controls, independent of menstrual cyclicity. The optimal cutoff point for IR was set at kITT value of 3.57%/minute or lower. Overall, 79% of the women with PCOS had IR. To control further for the effect of ethnicity, a subgroup of 46 non-Hispanic white PCOS participants were studied; those who exhibited amenorrhea (n = 15) or oligomenorrhea (n = 19) had or tended toward having a lower kITT and a higher prevalence of IR than the women with PCOS and oligo-ovulatory eumenorrhea (n = 12). The kITT trended lower and the prevalence of IR trended higher in women with PCOS and amenorrhea than those with oligomenorrhea. The measures of SHBG and HA were similar across the three menstrual groups. CONCLUSION(S): Oligo-ovulatory women with PCOS and overt oligo/amenorrhea have greater degrees of IR but not HA when compared with oligo-ovulatory eumenorrheic women with PCOS, suggesting that IR and hyperinsulinemia but not HA play a role in determining the degree of menstrual dysfunction, which can be used as a clinical marker for the degree of IR in oligo-ovulatory PCOS.

The Influence of Prepubertal Onset of Type 1 Diabetes and Age of Menarche on Polycystic Ovary Syndrome Diagnosis.

CONTEXT: Higher prevalence of polycystic ovary syndrome (PCOS) in women with type 1 diabetes (T1DM) is linked to exogenous insulin, especially when diabetes is diagnosed before puberty. OBJECTIVE: The study evaluates the impact of prepubertal onset of T1DM and insulin therapy on PCOS diagnosis and phenotypic characteristics in women with T1DM. DESIGN, SETTING, AND PATIENTS: We studied 83 women with T1DM (age 26 ± 5 years, BMI 24 ± 3 kg/m2) 36 with premenarchal (PM) onset of T1DM [17 with PCOS diagnosed (PCOS+PM) and 19 without PCOS (noPCOS+PM)] and 47 women with postmenarchal onset of T1DM [24 with PCOS (PCOS-noPM) and 23 without PCOS (noPCOS-noPM)]. OUTCOME MEASUREMENTS: Clinical examination, assessment of serum sex hormones, glycated hemoglobin (HbA1c) and ultrasonographic evaluation of the ovaries were performed in all women. RESULTS: Applying Rotterdam criteria, 49% of women with T1DM were diagnosed with PCOS. There were no differences in hormonal profile and ovarian parameters between PCOS+PM and PCOS-noPM. Women with T1DM+PM had higher insulin dose/24 h and U/kg bw/24 h than T1DM-noPM (P-values = 0.014 and 0.001, respectively). Both PCOS+PM and noPCOS+PM groups had higher insulin dose U/kg bw/24 h in comparison to PCOS-noPM (P-values = 0.004 and = 0.006, respectively). In multivariable logistic regression analysis, age of menarche [odds ratio (OR): 0.672; 95% confidence interval (CI): 0.465-0.971] and HbA1c (OR: 0.569; 95% CI: 0.383-0.846) were associated with the diagnosis of PCOS. CONCLUSIONS: There were no differences in the prevalence of PCOS between T1DM+PM and T1DM-noPM; however, earlier menarche might have an influence on PCOS diagnosis in women with T1DM.

Clinical Presentation and Diagnosis of Polycystic Ovarian Syndrome.

Polycystic ovarian syndrome (PCOS) is a common endocrinopathy with many clinical manifestations. The effects on women's lives start at puberty and can last throughout her lifetime. Women frequently experience anovulatory menstrual cycles, infertility, hirsutism, obesity and increased risk of diabetes mellitus, hypertension, lipid abnormalities, and metabolic syndrome. PCOS is a heterogenous disorder, and a diagnosis of exclusion. In general, women afflicted will have menstrual irregularities, ultrasound findings of abnormal ovarian size and morphology, and clinical or laboratory evidence of hyperandrogenism. This chapter reviews the current understanding of PCOS, associated metabolic abnormalities, and diagnosis in reproductive-aged women, as well as adolescents.

Anti-Müllerian Hormone Levels in Adolescence in Relation to Long-term Follow-up for Presence of Polycystic Ovary Syndrome.

CONTEXT: Anti-Müllerian hormone (AMH) measured in adolescence as biomarker for prediction of adult polycystic ovary syndrome (PCOS) is doubtful but not substantiated. OBJECTIVE: To investigate whether serum AMH levels and other PCOS-associated features in adolescence can predict the presence of PCOS in adulthood. DESIGN AND SETTING: A long-term follow-up study based on a unique adolescent study on menstrual irregularities performed between 1990 and 1997. PARTICIPANTS AND INTERVENTIONS: AMH was assayed in 271 adolescent girls. Data on PCOS features were combined with AMH levels. In 160 of the 271 (59%) participants, we collected information in adulthood about their menstrual cycle pattern and presence of PCOS (features) by questionnaire 2 decades after the initial study. RESULTS: AMH was higher in adolescent girls with oligomenorrhea compared with girls with regular cycles, median (interquartile range): 4.6 (3.1-7.5) versus 2.6 (1.7-3.8) µg/L (P < 0.001). Women with PCOS in adulthood had a higher median adolescent AMH of 6.0 compared with 2.5 µg/L in the non-PCOS group (P < 0.001). AMH at adolescence showed an area under the receiver operating characteristic curve for PCOS in adulthood of 0.78. In adolescent girls with oligomenorrhea the proportion developing PCOS in adulthood was 22.5% (95% CI, 12.4-37.4) against 5.1% (95% CI, 2.1-12.0) in girls with a regular cycle (P = 0.005). Given adolescent oligomenorrhea, adding high AMH as factor to predict adult PCOS or adult oligomenorrhea was of no value. CONCLUSIONS: Adolescent AMH either alone or adjuvant to adolescent oligomenorrhea does not contribute as prognostic marker for PCOS in adulthood. Therefore, we do not recommend routine its use in clinical practice.

Characteristics of Adolescents with Differing Polycystic Ovary Syndrome Phenotypes.

STUDY OBJECTIVE: To analyze clinical, metabolic, hormonal, and ultrasound characteristics of adolescents with polycystic ovary syndrome phenotypes. DESIGN: We performed a retrospective analysis of quality improvement data. We divided patients according to phenotype on the basis of clinical or biochemical diagnosis of hyperandrogenism (HA), irregular menstruation (IM), and presence or absence of polycystic ovarian morphology (PCOM) on pelvic ultrasound (PUS) images, if obtained. The 5 resulting groups were: (1) HA/IM/normal PUS, n = 28; (2) HA/PCOM, n = 10; (3) IM/PCOM, n = 18; (4) HA/IM/PCOM, n = 40; and (5) HA/IM/no PUS obtained, n = 80. We compared parameters between groups using the nonparametric Wilcoxon rank sum test. SETTING: Boston Children's Hospital, 2012-2016. PARTICIPANTS: One hundred seventy-six girls and young women aged 11-25 years. INTERVENTIONS: None. MAIN OUTCOME MEASURES: (1) Clinical, metabolic, and hormonal characteristics; and (2) PUS measurements. RESULTS: Groups with HA had significantly higher acne scores, Ferriman-Gallwey scores, and total and free testosterone concentrations than groups without HA. Significant differences in hemoglobin A1c were found between the IM/PCOM and HA/IM/PCOM groups (5.1% vs 5.3%; P = .01) and the IM/PCOM and HA/IM/no PUS groups (5.1% vs 5.3%; P < .01). In patients who had ultrasound performed, 49/94 (52.1%) met PCOM criteria on the basis of ovarian size, 37/94 (39.4%) on the basis of follicle number, and 27/94 (28.7%) on both; 10/94 (10.5)% had incidental findings on ultrasound, with 2 patients requiring further management. CONCLUSION: Limited differences in clinical, metabolic, and hormonal characteristics exist between adolescents with different phenotypes of polycystic ovary syndrome, and are mostly related to the presence or absence of HA. Of patients with ultrasound examinations, only 2 had clinically actionable incidental findings.

[A 14-year-old girl with cyclical abdominal pain]. / Een 14-jarig meisje met cyclische buikpijn.

In thisarticle, we present the case of a 14-year-old girl withcyclicalabdominalpainand a palpablemass in thelower abdomen duetoanimperforate hymen.

Screening for Androgen Excess in Women: Accuracy of Self-Reported Excess Body Hair Growth and Menstrual Dysfunction.

CONTEXT: Epidemiologic studies of polycystic ovary syndrome (PCOS) are limited, especially in populations where diagnostic resources are less available. In these settings, an accurate, low-cost screening tool would be invaluable. OBJECTIVE: To test the use of a simple questionnaire to identify women at increased risk for PCOS and androgen excess (AE) disorders. STUDY DESIGN: Prospective cohort study from 2006-2010. SETTING: Community-based. PARTICIPANTS: Women aged 14 to 45 years. INTERVENTION: A screening telephone questionnaire consisting of 3 questions was tested, where participants were asked to self-assess the presence/absence of male-like hair and menstrual irregularity. Participants were then invited to undergo a direct examination, including completing a medical history and undergoing a modified Ferriman-Gallwey (mFG) hirsutism score, ovarian ultrasound, and measurement of circulating total and free testosterone, DHEAS, TSH, prolactin and 17-hydroxyprogesterone levels. MAIN OUTCOME MEASURE: Accuracy of questionnaire in predicting PCOS, AE, and irregular menses. RESULTS: Participants with self-assessed irregular menses and/or excess hair were labeled "Possible Androgen Excess (Poss-AE)" and those self-assessed with regular menses and no excess hair were labeled "Probable Non-Androgen Excess (Non-AE)." The study was completed in 206/298 (69%) of the Poss-AE and in 139/192 (73%) of the Non-AE. Of Poss-AE and Non-AE subjects, 82.5% and 15.8%, respextively, presented with PCOS. The calculated sensitivity, specificity, positive predictive value, and negative predictive value of the 3-question telephone survey to predict PCOS was 89%, 78%, 85%, and 83%, respectively. CONCLUSIONS: A simple telephone questionnaire, based on self-assessment of body hair and menstrual status, can be used with a high predictive value to identify women at risk for AE disorders, including PCOS, and to detect healthy controls. This approach could be an important tool for needed epidemiologic studies.