Screening, referrals needed for overlooked ‘third pillar’ of PCOS: Psychosocial symptoms
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After years of advocacy and research, clinicians increasingly recognize the physical symptoms of polycystic ovary syndrome. Yet, many women with PCOS have a range of serious psychosocial comorbidities that often go unaddressed.
Physicians have gradually become more familiar with the constellation of reproductive and metabolic symptoms and comorbidities typically attributed to PCOS: hyperandrogenism, oligo- or anovulation, subfertility, obesity and high risk for type 2 diabetes.
Image: Regina Schaffer, Healio | Endocrine Today
Less explored is the psychosocial burden attributable to PCOS. That burden can include depression and anxiety but extends to other aspects of psychological health, such as body image distress, low self-esteem, disordered eating and sexual dysfunction.
“Reproductive-aged women are already prone to increased anxiety and depressive symptoms,” Helena J. Teede, MBBS, PhD, FRACP, FAAHMS, FRANZCOG, executive director of the Monash Partners Academic Health Science Centre in Melbourne, Australia, told Healio | Endocrine Today. “PCOS has a significant overlay, because it is often not diagnosed when women are in adolescence or early adult years, and the components of the condition are often dismissed. The hirsutism; the acne; the differences in body shape; the irregular menstrual cycles; the ‘I’m not like all of my friends.’ The parts of PCOS that are quite visible and distressing to the women who are affected are often not seriously considered.”
International surveys suggest physician knowledge about the mental health associations with PCOS is poor, Anuja Dokras, MD, MHCI, PhD, professor of obstetrics and gynecology at the Hospital of the University of Pennsylvania and director of the Penn Polycystic Ovary Syndrome Center, told Healio | Endocrine Today. Patients also report dissatisfaction with counseling regarding related psychological issues.
“The prevalence of anxiety and depression in PCOS is surprisingly high,” Dokras said during an interview. “We conducted a study that informed the updated PCOS guideline. Our study showed the prevalence of depression was around 30% among women with PCOS vs. 10% among women in the general population. For anxiety, the background rate was about 10% to 15%, and it was 40% among people with PCOS — several-fold higher.”
In the updated, evidence-based international guideline for PCOS, published in September 2023, the authors wrote that symptoms of depression and anxiety are significantly increased and should be screened for in all women with PCOS, with psychological assessment and therapy as indicated. The guideline also calls for greater awareness of other psychological features seen in PCOS, including signs and symptoms of disordered eating, body image concerns and sexual dysfunction, all of which impact quality of life.
“I am glad we now include mental health as the third pillar when talking about PCOS,” Dokras said. “We talk about the reproductive outcomes and the cardiometabolic risk. The third aspect is psychological. We are now talking about all three with equal weight.”
Recognition of mental health burden ‘limited’
The annual economic burden of mental health disorders associated with PCOS is estimated to be more than $6 billion, according to a 2022 meta-analysis.
Compared with women who did not have PCOS, those with PCOS had higher odds of anxiety (pooled OR = 1.65; 95% CI, 1.15-2.38), depression (pooled OR = 2.2; 95% CI, 1.69-2.86) and eating disorders (pooled OR = 1.53; 95% CI, 1.14-2.07). The estimated direct annual health care costs associated with these disorders for women with PCOS were $3 billion for depression, $2.2 billion for anxiety and $714 million for eating disorders — equating to more than $6 billion in 2021 U.S. dollars.
Despite those high estimated costs, many women still struggle to get an accurate PCOS diagnosis from a clinician. When they do, many feel their mental health concerns are overlooked or underappreciated, Teede said.
“The reason I ended up doing so much research in this area was when I went out to practice in the field, the women who were the most distressed were the women with PCOS, particularly the young adolescents, who came in with their mom and knew something was wrong,” Teede said. “When we would finally say ‘this is what it is,’ it was always such a relief for them to know they had something — a real condition, PCOS. It is so important to spend that 10 to 15 minutes reassuring patients that this is not you and these [symptoms] are the manifestations of PCOS. And that there are treatable aspects to this and we will come up with a plan for you to carry forward.”
In addition to recommendations for lifestyle changes, PCOS management often centers on the medical management of symptoms with oral contraceptive pills, spironolactone or metformin. In a large international survey published in 2017 co-authored by Dokras and Teede, only 17% of patients reported satisfaction with information they received regarding medical therapy for PCOS.
“An understanding of the interplay between these PCOS symptom-specific treatment options and the mental health conditions experienced by women with PCOS might better help clinicians counsel patients on treatment options,” Dokras and colleagues wrote in an analysis published in Fertility & Sterility in March. “Validated psychological screening tools are readily available for use in clinical practice, yet recognition of the burden of psychological symptoms in PCOS appears limited internationally.”
Treating the symptoms
The updated PCOS guideline states that health care professionals should be aware of the high prevalence of moderate to severe depressive symptoms and depression in adults and adolescents with PCOS and should screen for depression in all adults and adolescents with PCOS, using regionally validated screening tools. Similarly, the guideline states that all adults — but not adolescents, in whom data are less clear — should be screened for anxiety.
If moderate or severe depressive or anxiety symptoms are detected, practitioners should further assess, refer appropriately or offer treatment. The severity of symptoms and clinical diagnosis of depression or anxiety should guide management, according to the guideline.
“There are two ways of looking at it,” Dokras said. “One is treatment for PCOS, which can improve the anxiety and depressive symptoms. The other is treatment for anxiety and depression, per se.”
Dokras said lifestyle modification — the first-line treatment for PCOS — has been shown to improve depression and anxiety scores. Birth control pills have similarly been shown to improve depression and anxiety scores for some, in addition to improving the symptoms of acne and excessive hair growth that some women find distressing, Dokras said.
However, for some women, oral contraceptive pills do not improve and could even worsen depressive symptoms, according to Bulent Yildiz, MD, professor of endocrinology and metabolism at Hacettepe University School of Medicine in Ankara, Turkey.
“What we found was when you give oral contraceptives to women with PCOS, menstrual cycles become more regular, hirsutism improves and then the prevalence of depression after 6 months of oral contraceptive pill use was similar,” Yildiz told Healio | Endocrine Today. “Meaning, some women improved with oral contraceptive pill use and some women had increased scores of depression. This means the PCOS medications we are using, including hormonal contraceptives and ovulation induction agents, are important and could carry some risk for depression.”
There are not much data on the impact of metformin therapy, another first-line PCOS treatment option, on anxiety and depression scores.
If moderate to severe depressive symptoms persist after prescribing recommended first-line PCOS therapies, referral to a licensed therapist or psychiatrist is important, Dokras said.
“A primary care physician may also help manage these symptoms,” Dokras said. “And we do not always start with medications. There are good data that suggest cognitive behavioral therapy (CBT) works for treating mental health in PCOS and patients engaged in CBT feel better. If someone needs to be on medications, we should have a multidisciplinary approach and manage PCOS symptoms and mood issues simultaneously. Then, over time, once symptoms are managed, you could back off [medications] or reevaluate.”
Other nonmedical interventions should also be considered, according to John Barry, PhD, MSc, FBPsS, DHyp, CPsychol, an honorary lecturer in psychology at University College London and the author of the book Psychological Aspects of Polycystic Ovary Syndrome.“Women with PCOS may respond to the usual treatments for depression and anxiety. However, psychological interventions that have a more immediate impact on reducing physiological stress, such as yoga or deep relaxation training, might be better suited to PCOS,” Barry told Healio | Endocrine Today. “These types of interventions may have greater potential to reduce anxiety, which occurs at higher rates in PCOS.”
Teede said the mental health benefit of empathy should not be underestimated when dealing with PCOS, noting that additional referrals to a dermatologist to treat issues like acne and hirsutism can be equally important for body image concerns.
“Diagnosis is important. Information is important. Empathy is important,” Teede said. “When someone tells you that they are challenged by the hirsutism — they don’t want to go to the gym because they feel self-conscious and it affects their self-image and self-esteem — we need to empathize and understand that. Treating those features, with laser and the pill, they are quite effective and we know that improves quality of life and mood.“You may or may not, on top of that, need to treat anxiety and depression itself,” Teede said. “But one of the critical things about this is not necessarily jumping in to treat those symptoms [with antidepressants]. Many times, treating the features of PCOS makes a big difference.”
Burdens beyond the reproductive years
Mental health concerns are likely worse for midlife women with PCOS, according to Pamela J. Wright, PhD, MS, MEd, RN, CEN, assistant professor in the department of biobehavioral health and nursing science at University of South Carolina College of Nursing.
In a recent cross-sectional survey of 72 midlife women with PCOS, Wright and colleagues found respondents reported concern over the lack of information on managing the dual burden of PCOS and menopausal symptoms, as well as a high incidence of anxiety and depressive symptom burden.
“Psychosocial symptoms persist for women at midlife,” Wright told Healio | Endocrine Today. “Many women with PCOS are concerned about excess weight and obesity. There is much to be learned about dysregulation of fat cells in women with PCOS. It is probably more complex than hyperandrogenism. Hirsutism is mentioned in almost every interview and survey I have conducted. That does not improve with menopause. Their self-image continues to suffer because there is a lack of effective treatments.”
Wright noted that one study revealed that midlife women reported better psychosocial adaptation, suggesting that midlife women may develop improved coping skills with time.
“There becomes a mindset of almost resignation — this is what I have to deal with,” Wright said. There may be better acceptance that comes with age, but that does not mean they are happy dealing with these symptoms.”
Wright, who is working to design a health-related quality of life questionnaire for older women with PCOS, said older women with PCOS need more resources and support to better manage psychosocial symptoms.
More to learn
In the most recent updated PCOS guideline, the authors wrote that funding bodies should recognize that PCOS is highly prevalent and a high psychological burden that should be prioritized and funded accordingly. The guideline also calls for tailored information, education and resources that are high quality, culturally appropriate and inclusive for people with PCOS.
However, a major issue in studies of PCOS comorbidities is the lack of input from qualified specialists in the topic area, according to Andrea Dunaif, MD, the Lillian and Henry M. Stratton Professor of Molecular Medicine at the Icahn School of Medicine at Mount Sinai and chief of the Hilda and J. Lester Gabrilove Division of Endocrinology, Diabetes and Bone Disease for the Mount Sinai Health System in New York, and a Healio | Endocrine Today co-editor. It is controversial, Dunaif said, whether there is an increase in depression and anxiety in PCOS, independent of obesity.
“We do not know if there is some special mechanism for depression in PCOS, or if depression is just due to the symptoms, which reduce quality of life,” Dunaif said in an interview.
In a large genome-wide genetic correlation analysis and bidirectional Mendelian randomization analysis published in Human Reproduction in 2021, researchers found there is no shared genetic basis or causal relationship of PCOS with psychiatric disorders, including depression and anxiety. Any effect may be too modest to be detected, according to Elisabet Stener-Victorin, PhD, associate professor of reproductive physiology at the Karolinska Institute in Stockholm, Sweden, and a co-author of the study.
“We need to do more basic research to understand what actually happens in the brain,” Stener-Victorin told Healio | Endocrine Today. “We have just scratched the surface. We focus on the metabolic and reproductive features of PCOS, but not so much on the mental health. This is not as simple as, we treat and women feel better. We need to know whether [anxiety and depression] is a cause or a consequence of all of their other symptoms. We are not there yet.”
Some genetic studies show that genes for depression and PCOS align and there is some sharing with the genetic architecture, Dokras said. “We would like more studies to understand [whether] the mental health concerns are only a body image phenomenon or endocrine-related to testosterone levels?” Dokras said. “Is there a certain antidepressant that will work better in this population? There are no studies comparing the standard antidepressants. One size does not fit all.”
Teede is currently working on the international Polycystic Ovary Syndrome research road map, generated with input from 3,500 women and health professionals to better focus on the causes of mental health challenges in PCOS, among other diagnostic questions.
“Is it hormonal? Is it genetic? And second, how can we most effectively ameliorate it?” Teede said. “Most studies on treating PCOS do not evaluate the impact on mental health. It is a big gap that we need to address.”
- References:
- AskPCOS. https://www.askpcos.org/. Accessed: Sept. 20, 2024.
- Barry JA. Psychological Aspects of PCOS. Palgrave Macmillan, 2019.
- Bonner A, et al. Direct costs of mental health disorders in PCOS: Systematic review and meta-analysis. Presented at: The Endocrine Society Annual Meeting; June 11-14, 2022; Atlanta.
- Dokras A, et al. Fertil Steril. 2018;doi:10.1016/j.fertstert.2018.01.038.
- Gibson-Helm M, et al. J Clin Endocrinol Metab. 2017;doi:10.1210/jc.2016-2963.
- Jiang X, et al. Hum Reprod. 2021;doi:10.1093/humrep/deab119.
- Teede HJ, et al. Fertil Steril. 2023;doi:10.1016/j.fertstert.2023.07.025.
- Wright PJ, et al. Int J Womens Health. 2024;doi:10.10.2147/IJWH.S467737.
- For more information:
- John Barry, PhD, MSc, FBPsS, DHyp, CPsychol, can be reached at johnbarry@johnbarrypsychologist.com; X (Twitter): @PCOSResearcher.
- Anuja Dokras, MD, MHCI, PhD, can be reached at adokras@pennmedicine.upenn.edu; X (Twitter): @AnujaDokras.
- Andrea Dunaif, MD, can be reached at andrea.dunaif@mssm.edu.
- Elisabet Stener-Victorin, PhD, can be reached at elisabet.stener-victorin@ki.se; X (Twitter): @ElisabetStener.
- Helena J. Teede, MBBS, PhD, FRACP, FAAHMS, FRANZCOG, can be reached at helena.teede@monash.edu; X (Twitter): @HelenaTeede.
- Pamela J. Wright, PhD, MS, MEd, RN, CEN, can be reached at wrightpamelaj@sc.edu; X (Twitter): @PamelaJWright2.
- Bulent Yildiz, MD, can be reached at byildiz@hacettepe.edu.tr; X (Twitter): @obulentyildiz.
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