PCOS / PMOS
PCOS and quality of life
The symptoms, the fear of the future and daily life
Studies consistently show that women with polycystic ovary syndrome (PCOS/PMOS) have a clearly lower quality of life than women without the syndrome. The reasons often lie in symptoms that others see as “cosmetic”: extra hair growth, acne, hair loss, irregular bleeding and weight. For the woman herself, however, they are a daily burden that affects self-esteem, relationships, work and social life.
The 2023 international guideline therefore sees quality of life as one of the most important goals of treatment. There are special questionnaires developed for women with PCOS to measure it. Treatment starts with the question of which symptom affects a woman the most.
How is quality of life measured?
Quality of life is not a vague feeling. It can be measured with questionnaires developed especially for the syndrome. The best known, the PCOSQ, looks at five areas: emotions, hair growth, weight, fertility and the cycle. Its modified form, the MPCOSQ, also includes acne. The 2023 guideline recommends using such tools. In this way the doctor sees which area affects each woman most and how it changes with treatment.
What concerns women with the syndrome?
The most common concerns
The experience of diagnosis
How do signs of raised androgens affect quality of life?
Extra hair growth, acne and hair loss are caused by raised androgens. For many women they are the most distressing symptoms of the syndrome, because they are visible and a woman sees them in the mirror every day. Quality-of-life studies show that hair growth and weight affect women even more than cycle problems and infertility. Acne also lowers quality of life. These symptoms affect self-esteem, body image and sexual life, and they are linked to anxiety and depression, which are much more common in the syndrome.
Because these symptoms are part of the syndrome itself, the aim of treatment is often to improve them and to help the woman live better with them, not to make them disappear completely. The treatment options, with the data and limits of each treatment, are described in the article “Polycystic ovary syndrome”. The emotional strain is described in the article “PCOS and mental health”.
How does fear of the future affect quality of life?
Quality of life does not depend only on today’s symptoms. Many women live with the fear of what the syndrome may bring in the future: whether they will be able to have a child, and whether they will develop diabetes, heart disease or cancer of the womb lining. In an international study of 1,385 women with the syndrome, only about 16% were satisfied with the information they had received. A lack of good information makes the fear greater.
Infertility. The syndrome is the most common cause of missing ovulation. With good family planning, however, women with the syndrome have the family they wish for in the end. More in the articles “PCOS and infertility” and “PCOS and reproduction”.
Diabetes. A large analysis (Human Reproduction Update, 2020) showed that the risk of type 2 diabetes is about 3 times higher and the risk of high blood pressure about 1.75 times higher. With regular checks, the doctor detects blood sugar problems early. More in the article “PCOS, diabetes and metabolic syndrome”.
Heart. Cardiovascular risk factors are more common in the syndrome. For coronary heart disease, however, the difference is not statistically significant in the studies so far. More in the article “PCOS and the heart”.
Cancer of the womb lining. Before the menopause, the risk is 2 to 6 times higher. The absolute risk, however, remains low, and protecting the lining reduces it. More in the article “Polycystic ovary syndrome”.
Good information does not make the risks disappear, but it makes them understandable and manageable. With regular checks, most of these problems can be prevented or detected early. This reduces fear and improves quality of life.
Fear and the data
What the data show, compared with women without the syndrome
How does the syndrome affect sleep and energy?
Women with PCOS more often suffer from sleep apnea, pauses in breathing during sleep, even regardless of weight. Loud snoring, pauses in breathing at night, morning headaches and severe daytime tiredness are signs. The guideline recommends an assessment when these symptoms are present. Poor sleep increases tiredness, low mood and cravings, and makes weight control harder. Restful sleep improves energy, mood and also metabolism.
How does the syndrome affect eating?
Eating disorders and disordered eating are more common in women with PCOS, especially binge eating and bulimia. This applies to women of every weight. Frequent strict diets, the constant feeling of having to lose weight and pressure from others can trigger or worsen disordered eating. This is why every weight-loss plan and every diet a woman chooses needs special care. More in the article “Eating disorders”.
The guideline therefore recommends considering a possible eating disorder before the doctor advises weight loss, and paying attention to it during any change in diet. Weight loss at any price can do more harm than good. When there are signs of an eating disorder, a specializt assessment is needed.
How does the syndrome affect sexuality and relationships?
The syndrome can also affect sexuality. A negative body image, low mood, the pressure of trying for a child with “sex on schedule” and some medicines reduce desire and satisfaction. The guideline recommends raising this topic respectfully as well, because many women do not bring it up themselves.
A meta-analysis from 2018 showed slightly lower sexual function and satisfaction in women with the syndrome. The difference is linked more to body image and mood than to the hormones themselves. For this reason, treating the visible symptoms and the emotional strain often improves sexual life as well.
Some studies found the syndrome more often in lesbian and bisexual women. In a 2004 study at a fertility center, 38% of lesbian women had the syndrome, compared with 14% heterosexual women. Later studies, however, found no difference, and a 2017 meta-analysis found no statistically significant difference. The question remains open.
These conversations matter, because women of different sexual orientations have different needs: for contraception, for the wish for a child, for example with donor sperm, and for involving their partner in care. They also have different risk factors. Lesbian and bisexual women smoke more often, more often have a higher weight and emotional strain, and often have fewer cervical cancer screenings. Gynecological care must take this into account. The practice does not assume any sexual orientation and adapts its approach to each woman.
How does the syndrome affect daily life and work?
The symptoms of the syndrome affect every area of life. A woman’s daily life often revolves around them: the time spent removing hair, clothes that cover the skin, social events she avoids, and not knowing when the next period will come. On top of this come tiredness, mood swings and, for many couples, difficulty having a child. These effects are part of the syndrome and deserve the same attention as the lab values. More in the article PCOS and mental health.
What improves quality of life?
The most effective help is a treatment that targets the symptom that affects a woman the most. For one woman the hair growth comes first, for another the cycle, weight or the wish for a child. The doctor and the woman set the priorities together and adjust them over the course of life.
Realistic expectations are just as important. Treatment of skin and hair takes time, and clear information about the expected course prevents disappointment and stopping too early. Regular exercise, enough sleep and a diet without bans improve well-being further. A woman who understands her syndrome can make better decisions for her health.
The practice's approach
At the practice, quality of life is a goal of treatment in its own right and not a side effect. Care starts with the question of what affects a woman most in daily life. The plan follows from this, according to the phenotype, metabolism, the wish for a child and the phase of life.
The doctor explains every treatment with its expected benefit, its duration and its limits. The goal of the practice is that the woman can live well with the syndrome, with fewer symptoms, with security for the future and with the feeling of being taken seriously.
At every appointment, the woman fills in a short quality-of-life questionnaire that the practice developed for this purpose. In this way, the doctor sees how the woman’s daily life changes with the treatment, and not only the lab values.
Many years of experience with all clinical forms of the syndrome and the certification of the International Society of Gynecological Endocrinology (ISGE) for polycystic ovary syndrome allow highly specialized and individual care.
Sources: International Evidence-based Guideline for the Assessment and Management of Polycystic Ovary Syndrome (Monash University, ESHRE, ASRM, 2023); Teede HJ et al., Human Reproduction 2023. European Society of Endocrinology – The polycystic ovary syndrome: a position statement, European Journal of Endocrinology 2014. Cronin L et al., Development of a health-related quality-of-life questionnaire (PCOSQ) for women with polycystic ovary syndrome, Journal of Clinical Endocrinology and Metabolism 1998. Coffey S, Mason H, The effect of polycystic ovary syndrome on health-related quality of life, Gynecological Endocrinology 2003. Gibson-Helm M et al., Delayed diagnosis and a lack of information associated with dissatisfaction in women with polycystic ovary syndrome, Journal of Clinical Endocrinology and Metabolism 2017. Wekker V et al., Long-term cardiometabolic disease risk in women with PCOS: a systematic review and meta-analysis, Human Reproduction Update 2020. Barry JA et al., Risk of endometrial, ovarian and breast cancer in women with polycystic ovary syndrome, Human Reproduction Update 2014. Lee I et al., Eating and Weight Disorders 2019 (disordered eating in PCOS). Lee I et al., Increased risk of disordered eating in polycystic ovary syndrome, Fertility and Sterility 2017. Pastoor H et al., Sexual function in women with polycystic ovary syndrome: a systematic review and meta-analysis, Reproductive BioMedicine Online 2018. Agrawal R et al., Prevalence of polycystic ovaries and polycystic ovary syndrome in lesbian women compared with heterosexual women, Fertility and Sterility 2004. Robinson K et al., Lesbian and bisexual women’s gynaecological conditions: a systematic review and exploratory meta-analysis, BJOG 2017. American College of Obstetricians and Gynecologists, Committee Opinion No. 525: Health care for lesbians and bisexual women, 2012.