Polycystic Ovarian Syndrome Endocrine & Metabolic Service, The Royal Women s Hospital, Melbourne

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1 Endocrine & Metabolic Service, The Royal Women s Hospital, Melbourne Endocrine and Metabolic Service, The Royal Women s Hospital, 132 Grattan Street, Carlton, 3053 Telephone: 03) or 03) Fax: 03) Design: ERC RWH, May 2005

2 What is (PCOS)? PCOS is an endocrine (hormonal) condition which occurs in 5-10% of women of reproductive age. 1 There is no universally agreed definition, but women with PCOS have one or more clinical features and hormonal changes associated with increased androgen activity, irregular ovulation and insulin resistance. The condition is so named because often there are multiple follicles seen on ultrasound. However, these are not cysts, and by themselves are not diagnostic of the condition (some women may have PCOS and not have the characteristic ultrasound appearance). Problems which may be experienced include: irregular or only occasional periods which may be very heavy when they occur difficulty in getting pregnant because of irregular ovulation or no ovulation problems with weight management and a high upper body fat distribution excessive hair growth or occasionally loss of hair acne PCOS making the diagnosis clinical features hormone changes ultrasound assessment

3 2 What causes PCOS? The causes of PCOS are still not very clear but recent studies indicate that there What are polycystic ovaries? PCOS is not the same as polycystic ovaries (PCO). PCO only relates to how the 3 can be both genetic and environmental links. ovaries look, not the entire syndrome. PCO refers to lots of tiny follicles on the There are some genes which may be associated with a predisposition to PCOS, and often but not always (in about 60-70% of cases), the condition is associated with weight gain. PCOS causes the body to be relatively resistant to the hormone insulin, which acts to bring glucose from the bloodstream into cells. The body thus makes more insulin to do the job properly. This elevated insulin then seems to have ovary (2-8 millimetres in diameter), sometimes with thickening of the core tissue (the stroma). These follicles in themselves are not dangerous and do not need surgical treatment to be removed. It does not mean the ovaries have big cysts. This characteristic appearance of the ovaries is seen in women who have PCOS, but also in women who do not ovulate regularly for other reasons, as well as many women who do ovulate regularly and do not have PCOS. effects on the reproductive and androgenic (testosterone) hormones to interrupt the normal reproductive cycle. This then leads to the irregular periods and Fallopian tube symptoms of excess hair and acne which are so commonly found in women with PCOS. How PCOS happens Uterus Endometrium weight gain PCOS Normal ovary Ovary Cervix Vagina Insulin resistance more insulin secreted genes Polycystic ovary Vulva increased activity of testosterone (hair/acne) ovarian cycle disrupted (irregular cycles/anovulation) Polycystic appearing ovary (image supplied by Dr Mandy Sampson of Women s Imaging Center, East Melbourne)

4 4 How common is PCOS? The development of ultrasound techniques, particularly internal (transvaginal) scanning, has helped our understanding of the true frequency of PCOS and What sort of hormone disturbances can be associated with PCOS? Androgens 5 PCO. The ultrasound appearance (PCO) is detected in about 20% of all women of reproductive age. The fact that PCO can be found in women who have regular menstrual cycles, do ovulate, and may not have any features of elevated testosterone, highlights the importance of making a careful diagnosis of the condition of PCOS. Androgens are the male-type hormones which are present in low levels in all women. They include testosterone, produced mainly in the ovary, and other hormones mainly produced in the adrenal gland. These hormones in excess cause increased body hair and acne. It seems likely that the ovaries are the major source of the excess androgens in PCOS, sometimes with a secondary PCOS is found in : 8-10% of women of reproductive age contribution from the adrenal gland. In some cases there may be excessive production of testosterone, but often it is just that there is an increased availability of the free hormone in the bloodstream. Sometimes the total and free 70-80% of women who do not have regular ovulations levels of testosterone are normal, but the hair follicle cells are particularly over 80% of women who suffer from excessive hair growth sensitive to even low levels, thus stimulating increased hair production. Pituitary hormones Another commonly reported endocrine abnormality detected in PCOS is a raised luteinising hormone (LH for short). This is a hormone produced by the pituitary gland and is responsible for sending signals to the ovaries to make other hormones such as progesterone (which makes the lining of the uterus suitable to nourish an early pregnancy) and testosterone. The other pituitary hormone which has an important role in reproduction is follicle stimulating hormone (FSH for short). FSH is responsible for stimulating follicle development in the ovary, and in the normal menstrual cycle, FSH levels go up and down at various times to allow this to happen. In PCOS, FSH levels are relatively constant, thus there is early development of follicles from the microscopic stage to the just visible (by ultrasound) stage, but the follicles do not grow to be mature and thus capable of releasing eggs at ovulation.

5 6 Insulin Insulin, a hormone from the pancreas, is also affected. It is the hormone that is responsible for transferring glucose or sugar from the blood stream into body cells. In PCOS insulin may not work as well as it normally would, which is called insulin resistance. The body then produces more of it to do the same work so women with PCOS often have higher levels of insulin than normal. This then affects the ovaries and the other hormones leading to PCOS symptoms. The presence of elevated insulin levels does not mean that someone has diabetes since blood sugar levels are usually still normal. Diabetes is diagnosed when blood sugar levels are too high. Insulin is a growth hormone and high levels can lead to too much fat in the upper body which then increases the insulin resistance. This leads to even higher insulin levels so a difficult cycle of weight gain and worsening PCOS symptoms can occur. Long term problems Women who have untreated PCOS during the reproductive years have a slightly increased risk of developing high blood pressure, diabetes and heart disease in later life. These risks are also closely associated with being overweight. Slim women who have PCOS have only a slightly increased risk of developing diabetes later in life. Therapy Because the exact cause is unknown, there is no single effective curative treatment for PCOS. Most treatment options are therefore directed at improving symptoms. The first recommendation is usually for a healthy lifestyle. Studies show that making changes to food, eating patterns and exercise, plus losing some weight if necessary, can reduce insulin resistance, improve PCOS symptoms, help prevent long-term problems and reduce the use of medications. The following is a brief summary of diet and exercise recommendations. For further information consult a health care professional with an understanding of PCOS. Physical Activity and PCOS Exercise has been found to have independent beneficial effects on reproductive hormone profiles, insulin levels, and the metabolic rate of the body. It also improves mood and energy levels and with dietary changes helps with weight loss. Research has shown that people who exercise regularly, even if they are overweight or have a family history of diabetes, have less risk of developing diabetes or cardiovascular disease later if life. This means physical activity is an important first line therapy for PCOS. 7 How much and what type? Be active every day and then at least 3 to 4 times a week aim for 30 to 45 minutes of more vigorous exercise. A balanced mix of activities that include aerobic, resistance and flexibility/stretching exercises is recommended. Variety is also important - if you are getting bored, it is time to try something new! Women who have PCOS and do not ovulate regularly may also be at a slightly increased risk of developing overgrowth of the lining of the uterus, which extremely rarely, progresses to malignancy of the uterine lining.

6 8 Healthy Eating Healthy eating is an essential part of PCOS management. The main aims, apart from good nutrition are to improve insulin levels and avoid excessive energy intake where weight is a concern. Four key points achieve this: 1.Eat Regular Meals Spreading food more evenly over the day helps to prevent large swings in insulin and hunger levels which can lead to overeating later in the day. Eat meals and snacks when you need them but be careful not to overeat. 2.Have a Healthy Variety of Foods Each Day. This includes: A moderate protein intake Foods like meat, chicken, fish, eggs, dairy, nuts, legumes or soy foods are an important part of the day's nutrition as they contain protein and minerals like iron, zinc and calcium. Protein can add to the feeling of fullness when eating which may help with weight loss. 'Healthy' fats in small amounts The type of fat eaten is important so choose monounsaturated fats and omega 3 essential fatty acids in moderation and avoid saturated fats. To do this use small amounts of olive oil or canola oil in cooking and monounsaturated spreads instead of butter. Use low fat dairy foods and include fish regularly. Check the labels on food for saturated fat levels. 9 Plenty of Fruits, Salads and Vegetables These are high in fibre and vitamins and not too high in kilojoules. They should make up about half your plate at a main meal and be one of the first choices for snacks. Be careful with juices as they can be too high in sugar and kilojoules. 3.Limit High Fat, High Sugar Foods Foods containing a lot of fat and sugar produce excess kilojoules (calories), contribute to weight gain and higher insulin levels and often don't contain much nutrition. However, low fat, low sugar does not mean no fat, no sugar! The best approach is commonsense moderation and avoiding extremes in Wholegrain Cereals intake of any foods. Choose wholegrain breads and breakfast cereals and keep serving sizes of rice and pasta to about one cup cooked at a time. Avoid too many extra biscuits, muffins and cakes so your intake of energy from starch and sugars (carbohydrate) is not too high. 4.Pay attention to eating habits, not just food People eat for many reasons such as pleasure, boredom, loneliness, stress or simply out of habit. This eating can be a concern if it leads to a less healthy food intake or a higher kilojoule intake than needed and weight gain. Reducing The glycaemic index (G.I.) is a ranking of carbohydrate (sugar and starch) foods based on their effect on blood sugar (glucose) levels. Lower G.I. foods have a number of benefits for PCOS. To find out more consult a dietitian. this 'non hungry' eating is the best way to maintain a healthy weight. Serving sizes of food have also increased in recent years leading to many people becoming used to eating too much at a time. Experiment with smaller serving sizes and be careful not to overeat when eating out socially.

7 10 Weight and PCOS If overweight, weight loss will help with symptoms and will also decrease the risk of long term complications. Several studies in overweight women with infertility due to ovulation difficulties have shown the return of normal ovarian function with even small amounts of weight loss. For women who are not overweight, healthy eating and regular exercise are also important in maintaining the best health and reproductive health but weight loss is not desirable. Average weight loss by week in a dedicated program for overweight women with PCOS who do not ovulate spontaneously. week number kgs resumption of ovulation 5.9kgs Weight loss can be best achieved by a program of healthy eating and exercise as outlined in this booklet. Usually there is no need for a rigid diet however women often find guidelines and nutritional advice from a health care professional helpful. Remember also women can be fit, well and healthy at a wide range of shapes and sizes, so weight alone is not the only guide to success. Other changes to look for include reducing waist measurements, clothes fitting better, symptoms improving or better changes on blood tests. Big Girls Group Weight loss and lifestyle programs such as the BGG provide education and support for women wishing to optimise their reproductive and gynaecological health Medication for insulin resistance Healthy lifestyle changes and weight reduction are the first recommended treatments for PCOS but there have also been some trials using anti-diabetic medications, such as metformin, in women with PCOS. The aim of these medications is to help reduce the insulin resistance, which then flows on to reduce the high levels of androgens and often results in resumption of normal ovulatory menstrual cycles. metformin has temporary side effects which include diarrhoea and nausea, but these tend to improve after eight to twelve weeks of treatment. You will also need an occasional blood test to check your vitamin B12 levels if taking metformin. Even if normal cycles do not return with metformin therapy, its use may improve the success of ovulation induction for pregnancy with clomiphene or gonadotrophin injections. 11

8 12 Ovulation problems In women of normal weight, and in association with weight loss in overweight Irregular, heavy periods To avoid overgrowth of the lining of the uterus, and to regulate periods, hormonal 13 women, medications may be required to stimulate ovulation. These include preparations may be useful. The oral contraceptive pill (OCP) is the most widely clomiphene tablets and injections of gonadotrophin hormones. These used therapy for cycle control. Sometimes progesterone-like hormones given in a medications are quite successful, but have side effects which include the risk cyclical program may be an alternative. of multiple pregnancy and overstimulation of the ovaries. For this reason, careful monitoring is required when using these medications to induce ovulation in Options for management of menstrual cycle problems women with PCOS. In some cases where medications are not successful, key hole surgery is utilised to reduce the number of follicles in the ovary. This is called 'golf-balling' or 'ovarian drilling' and may have a temporary effect (about six months in most cases) of stimulating ovulation. weight loss/exercise if overweight metformin Options for management of ovulation problems hormonal cycle control eg OCP ultrasound surveillance weight loss/exercise if overweight metformin hysteroscopy (if abnormal bleeding) clomiphene (monitoring ideally) risk of multiple pregnancy gonadotrophins (monitoring essential) laparoscopic ovarian drilling IVF (if can t safely induce ovulation)

9 14 Excessive hair growth Cosmetic measures, such as depilatory, waxing or electrolysis, are commonly Body Image and PCOS Our body image is our internal picture of our outer self and includes how we 15 used to remove excessive body hair. Hormonal medications may also be utilised see, think and feel about our body. Having PCOS can add to negative body to dampen down the effects of the male-type hormones in order to reduce image experiences and put some women at more risk of self esteem and unwanted hair. It is important to understand that the benefits take about six emotional issues or eating disorders. Discuss your concerns about hair, months to start working, however. femininity or your body with your doctor and look carefully at all the options for treatment. Options for management of excess hair Try to be aware of judging yourself by negative media or community stereotypes, focus on how your whole body helps you to enjoy life, rather than the 'parts' that weight loss and exercise cosmetic measures you don't like as much and notice the wide variety of different body shapes and sizes there are at any age. 6/12 to see effects oral contraceptive pill/ cyproterone acetate hormone medicines to reduce hair (eg cyproterone acetate and OCP/spironolactone)

10 16 Summary Polycystic ovarian syndrome is not a disease, but a collection of clinical problems which can affect ovulation, periods and other body systems. It is extremely common and 5-10% of women may experience some of these problems at some stage during their reproductive life. It can be improved by a healthy lifestyle, especially good nutrition and exercise, and particular symptoms may also require medical and occasionally surgical treatment. Help is available, and it is important to understand as much as possible about the condition, so ask your doctor. How to get help and advice Clinics Endocrine and Metabolic Clinic The Royal Women s Hospital, 132 Grattan Street, Carlton 3053 Telephone or Facsimile This clinic specialises in the management of PCOS and offers access to gynaecologists, endocrinologists, nurse coordinators, dieticians, exercise therapists, counselors and a creative therapist, all with specialist training and experience in reproductive endocrinology and PCOS. The Big Girls Group The Royal Women s Hospital, 132 Grattan Street, Carlton 3053 Telephone or Facsimile The Big Girls Group, Dandenong c/o 4/118 David Street, Dandenong 3175 Telephone Facsimile Web sites Good source of information relating to PCOS Royal Women's Hospital Melbourne. Women's Health Information. PCOS Australia Support Group Dietitians Association of Australia Dr. Rick Kausman. Healthy weight management. Diabetes Australia - Victoria University of Sydney information about glycemic index Books If not dieting, then what: by Dr Rick Kausman (Allen and Unwin) Calm eating: by Dr Rick Kausman (Allen and Unwin) A patient s guide to the polycystic ovary: by Dr Gabor Kovacs and Jane Smith PCOS A woman s guide to dealing with PCOS: by Collette Harris and Dr Adam Carey