PCOS beyond fertility: What do patients truly care about?
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Key takeaways:
- Polycystic ovary syndrome impacts physical and emotional well-being, with symptoms extending far beyond reproductive concerns.
- Women with PCOS are seeking holistic, patient-centered care.
Historically, much of the medical conversation around polycystic ovary syndrome, which affects 5% to 20% of women worldwide, has centered on fertility, but the condition extends far beyond reproductive health.
Women with PCOS contend with a range of symptoms that impact their physical, emotional and social well-being. These include weight gain, fatigue, irregular menstrual cycles, insulin resistance and excessive hair growth. Additionally, women face long-term challenges, from managing the side effects of medications to the risk for developing comorbidities. PCOS affects women throughout their lives, influencing their mental health, careers, social relationships and even the health of future generations.
In this editorial, we address what patients with PCOS care about beyond fertility. We explore the challenges of polypharmacy, the long-term effects of medications and the physical and emotional toll of living with a chronic, often invisible condition. We also discuss the unmet needs of patients, including the desire for multidisciplinary care, improved communication with providers, and more nonpharmaceutical treatment options.
Polypharmacy, medication burden
A significant concern for women with PCOS is managing multiple medications. Given the wide-ranging symptoms of PCOS, patients often require several medications: hormonal contraceptives to regulate menstrual cycles, metformin for insulin resistance and antiandrogens for hirsutism. Additionally, medications for anxiety or depression, which frequently accompany PCOS, further complicate treatment regimens.
While these medications are essential for symptom management, they come with significant burdens. PCOS is a lifelong condition, meaning that many patients are on medication for years, if not decades. Managing multiple prescriptions and adhering to dosing schedules can be overwhelming. Additionally, concerns about drug interactions, adverse effects and the long-term health risks of prolonged medication use are prevalent. For example, hormonal contraceptives increase the risk for blood clots and cardiovascular issues, whereas metformin is associated with gastrointestinal issues and vitamin B12 deficiency. These risks, although relatively low, are a source of anxiety for many women as they age. Patients often face the difficult decision of weighing the benefits of symptom relief against the potential long-term health consequences of polypharmacy.
Many patients with PCOS seek more transparency and support from health care providers regarding the long-term risks of their medications. They are also eager for alternative therapies or integrative approaches that could reduce their reliance on pharmaceuticals.
Fatigue, low energy
Fatigue and low energy are among the most common yet least discussed symptoms of PCOS. Many women experience chronic tiredness, which affects their ability to function at work, maintain relationships or engage in physical activities. This fatigue is often linked to insulin resistance and hormonal imbalances — hallmark features of PCOS.
Irregular menstrual cycles, another key symptom, can exacerbate these issues by causing unpredictable fluctuations in energy levels and mood. Women with PCOS often experience intense fatigue during menstruation, which can be worsened by heavy or painful periods. These physical challenges disrupt daily routines, making it difficult to maintain a stable work-life balance or fully participate in social activities.
Challenges of weight gain, insulin resistance
Weight gain and the difficulty of losing weight are persistent concerns for women with PCOS. Insulin resistance, common in PCOS, is associated with increased abdominal adiposity. This contributes not only to weight gain but also to difficulty losing weight through traditional diet and exercise methods. Many women feel stigmatized by health care providers who focus solely on weight loss, often without addressing the underlying causes.
The emphasis on weight loss can also take a toll on mental health. Many women with PCOS report frustration and defeat due to the constant pressure to lose weight, despite the metabolic challenges of the condition. This focus on weight can lead to disordered eating habits and unhealthy relationships with food.
Hirsutism and emotional distress
Hirsutism, or excessive facial and body hair growth, is a symptom that causes significant emotional distress for many women with PCOS. This visible sign of hormonal imbalance negatively affects self-esteem, relationships and overall mental health. Women with hirsutism often feel self-conscious in social settings and struggle with body image issues.
Managing hirsutism often requires a combination of medications, hair removal treatments and lifestyle changes. Some women turn to expensive and time-consuming procedures such as laser hair removal, while others rely on medications such as spironolactone, which can have adverse effects.
Depression, anxiety and mental health struggles
Mental health issues, including depression and anxiety, are highly prevalent among women with PCOS. The physical symptoms, combined with the challenges of managing a chronic illness, often lead to emotional distress. Women with PCOS frequently report feelings of frustration, sadness and hopelessness, especially when faced with the long-term nature of the condition and the limited treatment options available. There is a clear desire for care that addresses the whole person, including physical and psychological symptoms.
Long-term concerns
PCOS is associated with various comorbidities, including type 2 diabetes, CVD, sleep apnea and metabolic syndrome. The risk for developing these conditions increases with age, making long-term health a significant concern. Women with PCOS want more proactive care, including better access to screenings, lifestyle interventions and education on reducing their risk for developing these comorbidities.
Another major concern is intergenerational health. Many women worry about the genetic component of PCOS and its potential impact on their daughters and future generations.
Impact on occupational life, social interactions
PCOS can significantly impact a woman’s occupational life and social interactions. Fatigue, mood swings and physical symptoms can reduce productivity, leading to missed days of work and career setbacks. The emotional distress caused by symptoms like hirsutism and weight gain can undermine confidence, making it harder to engage socially.
Women with PCOS also report that managing the condition requires substantial time and energy, from attending medical appointments to adhering to complex treatment regimens. This can lead to social isolation and feelings of being overwhelmed.
Lack of multidisciplinary care, treatment options
A major frustration for women with PCOS is the lack of multidisciplinary care. Given the complexity of PCOS, managing the condition often requires input from multiple specialists, including endocrinologists, gynecologists, dermatologists and mental health professionals. However, many women report that their health care providers focus on isolated symptoms rather than offering cohesive treatment plans.
Patients frequently feel unheard by health care providers, especially regarding mental health concerns or the long-term effects of medications. There is also frustration with the persistent focus on fertility, which can feel irrelevant for patients who are not trying to conceive.
Women with PCOS are increasingly calling for more research into alternative therapies, nondrug treatments, and integrative approaches that address the full spectrum of symptoms.
Moving toward comprehensive PCOS care
Women with PCOS truly care about , patient-centered care that extends beyond fertility. This includes addressing the burden of polypharmacy, understanding the physical and emotional toll of living with the condition, and receiving integrated care from a variety of health care professionals. By focusing on the whole patient, we can help women with PCOS lead healthier, more fulfilling lives.
References:
- Deswal R, et al. J Hum Reprod Sci. 2020;doi:10.4103/jhrs.JHRS_95_18.
- Karjula S, et al. J Clin Endocrinol Metab. 2017;doi:10.1210/jc.2016-3863.
- Rudnicka E, et al. Int J Molec Sci. 2021;doi:10.3390.ijms22073789.
- Salari N, et al. Arch Gynecol Obstet. 2024;doi:10.1007/s00404-024-07607-x.
- Song M, et al. Front Endocrinol. 2022;doi:10.3389/fendo.2022.1053709.
- Teede HJ, et al. Eur J Endocrinol. 2023;doi:10.1093/ejendo/lvad096.
For more information:
Dawnkimberly Hopkins, PhD, WHNP-BC, is founder of PCOS Paragon Health Services in Baltimore. She can be reached at khopkins@pcosparagonhs.com.
Sasha Ottey, MHA, MLS, is the executive director of PCOS Challenge: The National Polycystic Ovary Syndrome Association. She can be reached at info@pcoschallenge.org; X (Twitter): @PCOSChallenge.
Hejiang Wu, MSc, is an analytics project manager at PCOS Challenge. He can be reached at hwu@pcoschallenge.com.