Polycystic Ovary Syndrome (PCOS) is an endocrine disorder amongst women, which affects fertility and sexual activity negatively and leads to possible pregnancy complications, hence challenging health-related quality of life and overall quality of life. This is a fairly common diagnosis and probably the most frequently encountered endocrinopathy in women of reproductive age. In this article, we’ll be exploring the psychological consequences of infertility caused by PCOS.
What is PCOS?
The majority of women with PCOS have anovulation and dysfunctional bleeding. But some authors divide PCOS into three phenotypes: classic, ovulatory, and non-hyperandrogenic.
Classic PCOS is classified based on the presence of chronic ovulatory dysfunction, hyperandrogenism, hirsutism, abdominal obesity, increased levels of luteinizing hormone and luteinizing hormone / follicle-stimulating hormone ratio increased level of androgens, and elevated insulin and insulin resistance.
Ovulatory PCOS is classified based on average values – when compared with classic PCOS – of serum androgens, insulin, testosterone, atherogenic lipids, hirsutism scores, the prevalence of metabolic syndrome, body mass index, and waist circumference, but normal levels of LH.
Non-hyperandrogenic PCOS is classified based on – when compared with classic PCOS – lower luteinizing hormone to follicle-stimulating hormone ratios, total and free testosterone levels, acne symptoms, and higher sex hormone-binding globulin levels.
Although PCOS is mainly associated with females, a male equivalent of PCOS seems to exist. Male PCOS can be found in patients with PCOS-like hormonal patterns, metabolic abnormalities, clinical signs of hyperandrogenism, high body mass index, and with a family history of PCOS diagnosis. Nevertheless, further studies are needed to explore this condition, particularly the testicular function and sperm quality of such patients.
How is PCOS diagnosed?
PCOS diagnosis relies on criteria that differ according to the scientific association that released them:
The National Institutes of Health and the National Institute of Child Health and Human Development consider clinical and/or biochemical signs of hyperandrogenism and menstrual dysfunction to make the diagnosis.
The European Society for Human Reproduction and Embryology and the American Society for Reproductive Medicine consider clinical and/or biochemical signs of hyperandrogenism, oligo-ovulation or anovulation, and polycystic ovaries to make the diagnosis.
And the Androgen Excess Society considers clinical and/or biochemical signs of hyperandrogenism and ovarian dysfunction and/or polycystic ovaries to make the diagnosis.
What does PCOS have to do with Quality of Life?
Quality of Life is a construct that represents the perceived quality of living someone has. To do so, Quality of Life has six domains: physical health, psychological health, level of independence, social relationships, and environment and spirituality/religion/personal beliefs. Health-Related Quality of Life represents a very similar construct but solely focused on how health-related aspects of life, mainly physical, impair a person’s life.
Health-Related Quality of Life is more impaired in classic PCOS, because it is the more pronounced expression of this disease. However, similar psychological profiles are found in all types of PCOS, so even in milder presentations of PCOS, well-being may be impaired. Apart from the physically painful and/or uncomfortable symptoms PCOS brings, sociocultural pressures also play a role in decreased well-being and quality of life in these patients. This means that Quality of Life may not be so homogeneous as Health-Related Quality of Life.
For example, being overweight, having male-like hair distribution, acne, and hair loss contribute to a different appearance that the patient does not like and others might judge, leading to diminished self-esteem, recurrent shame, sadness, and disrupted social interactions. The way this disease impacts women varies across the world.
For Turkish women with PCOS, an irregular menstrual cycle and hirsutism had the biggest impact on their Quality of Life.
For Iranian women, menstrual irregularities and infertility had the biggest impact on their Quality of Life, followed by hirsutism, weight, emotional concerns, and acne.
For Brazilian women, body weight and infertility had the biggest impact on their Quality of Life.
A study attempted to develop a questionnaire to screen Quality of Life in regards to PCOS, called PCOSQOL. A sample of UK women was used. The PCOSQOL scale represents aspects of quality of life important to British women with PCOS. The PCOSQ includes five subscales: emotions, body hair, infertility, weight, and menstrual problems.
Other psychological symptoms, such as anxiety and depression, also often appear associated with treatment (PCOS treatment and fertility treatment), due to uncertainty of outcomes, waiting periods, trying different therapies, and a sense of inability to cope.
Are there interventions to improve Health-Related and Overall Quality of Life?
Lifestyle choices and behaviours have a significant impact on PCOS. Thus, lifestyle interventions are always advised, including dietary and exercise interventions.
Adherence rates to dietary interventions tend to be high. People try to make better choices, make health-conscious dietary decisions, and attend required diet clinic meetings. However, maintaining these changes over time can be very difficult for some people, and for those who have struggled with their weight for a long and have already tried various diets, this can be frustrating. This improves Health-Related Quality of Life, but not necessarily Quality of Life in all its subscales because lifestyle changes can be hard to implement and keep up with, causing mental distress. That’s why accompanying these interventions with professional psychological help matters.
Adherence to physical activity depends on the type of intervention: supervised training works better than independent home-based exercise. Patients who participate in cognitive behavioral therapy in addition to lifestyle counseling meet exercise goals more often and efficiently compared to patients who do lifestyle counseling alone. This improves Health-Related Quality of Life and, for some people, overall Quality of Life, improving symptoms and/or prevalence of depression and anxiety in women with PCOS. It is the intensity of exercise that seems to matter the most, but the daily practice, adjusted to the person’s ability to perform the activity.