What is Polycystic ovary syndrome?
Polycystic Ovary syndrome (PCOS) is a very common endocrine condition that affects 1 in every 10 women and those assigned female at birth in the UK. It manifests differently in each person and can be incredibly devastating to an individuals self esteem and quality of life. There is no known cause or cure. It was first 'discovered' in 1953 by doctors Stein and Leventhal, so for many years it was known as the Stein-Leventhal syndrome.
The term polycystic ovaries describes ovaries that contain small 'cysts' (about twice as many as in normal ovaries), usually no bigger than 8 millimeters each, located just below the surface of the ovaries. The 'cysts' in polycystic ovaries are not true cysts. They are not full of liquid, they do not get bigger or burst, they do not require surgical removal and do not lead to ovarian cancer. They are actually follicles that have not matured to be ovulated which is why the name of the condition is confusing.
It was originally thought that these follicular cysts caused the condition but we now know they are one of the symptoms and not everyone will get them. Due to the confusion with the name of the condition, both with healthcare professionals and the general public, there are now discussions around the potential for changing the name.
Symptoms of PCOS
PCOS affects women and AFAB individuals in different ways so not everyone will have all these symptoms. Some may only have mild symptoms, while others may have a wider range of more severe symptoms.
- irregular periods or complete lack of periods
- irregular ovulation or no ovulation at all
- reduced fertility- difficulty becoming pregnant
- unwanted facial or body hair (hirsutism)
- oily skin, acne
- thinning hair or hair loss from the scalp (alopecia)
- weight problems- being overweight, rapid weight gain, difficulty losing weight
- depression and mood changes
Symptoms usually start in adolescence, although some do not develop them until later in life. However, many do not recognise early development of symptoms as part of the underlying condition of PCOS. The condition has long-term health implications as those with PCOS may have increased risk of developing type 2 diabetes and heart disease, as well as higher risk of endometrial cancer.
Causes of PCOS
The exact cause of PCOS is unkown however there are a variety of different hormone imbalances that impact the severity and range of symptoms.
What is currently understood is that insulin is a hormone produced by the pancreas to regulate the level of glucose in the blood. Many women with PCOS have been found to have a condition known as insulin resistance, in which the body's tissue are resistant to the effects of insulin (particularly on the ability of insulin to get glucose into muscle tissue), so the body has to produce more insulin to compensate. High levels of insulin can cause the ovaries to produce too much testosterone and can cause us to gain weight- excess body fat in turn can make us produce more insulin.
For some there are abnormalities in some of the hormones that can control the menstrual cycle. These abnormalities typically include:
- Higher than normal levels of LH (luteinising hormone) which stimulates ovulation
- Higher than a normal levels of androgens such as testosterone
- Below normal levels of FSH (follicle stimulating hormone) secreted by the pituatary gland to develop follicles for ovulation
- Below normal levels of Progesterone which regulates the thickness of endometrial lining
- Below normal levels of SHBG (sex-binding hormone globulin) a protein in the blood that regulates the levels of testosterone.
Long term health risks
Type 2 diabetes
People with PCOS who have insulin resistance have an increased risk of developing type 2 diabetes known as non-insulin-dependent diabetes. This is much more likley to occur in people who are overweight, but sometimes occur regardless of weight and it is believed people with PCOS are up to 40% more likely to develop PCOS than a person without the condition. The number can be as high as 50% in south east asian people with PCOS.
Cardiovascular disease
People with insulin resistance may also be at risk of developing heart disease in later life. However, although risk factors for heart disease may be increased with PCOS, there is as yet, no clear evidence that heart attacks are more common in women with the condition than those who do not have PCOS. These risks can be reduced to a large extent by preventative measures such as good nutrition and excercise. Preventative measures are particularly important for people who are overweight and for those who have a family history of diabetes or heart disease.
Endometrial cancer
People who have very infrequent periods- fewer than 4 a year- may have increased risk of developing endometrial cancer, if the womb lining (endometrium) becomes too thick. Fortunately this type of cancer is quite rare and the risk can be minimised and probably eliminated by appropriate treatments to regulate periods- such as the oral contraceptive pill, progesterone tablets or a progestogen releasing coil.
Diagnosing PCOS
PCOS affects people in different ways, so not everyone will have all the related PCOS symptoms. Some may have only mild symptoms, while others may have a wider range of more severe symptoms. This is part of what makes PCOS so difficult to diagnose and manage, as no two individuals are the same.
PCOS was formally described in 1935 and was originally called Stein-Leventhal syndrome after the doctors discovered and defined the group of symptoms presented. We have had a formal diagnostic criteria from the US NIH and this was expanded upon in 2003 under the Rotterdam criteria which state that 2 of the following must be presented for diagnosis:
- Irregular or no ovulation
- Excess androgens and/or physical signs of this
- Polycystic Ovaries
Based on this the NICE guidelines for the UK recommend the following tests to be carried out for diagnosis:
- Total Testosterone
- Sex hormone-binding Globulin
- Leuteinizing Hormone
- Follicle- stimulating hormone
- prolactin
- thyroid stimulating hormone
Pelvic ultrasound to look for:
- Follicular cysts- these are different to ovarian cyst
- or enlarged ovaries
Your doctor should also check your blood pressure level and blood sugar level due to the increased risk of type 2 diabetes.The NICE guidelines recommend this to be monitored on an annual basis.
Once diagnosis has been made, your doctor may refer you to a specialist depending on your symptoms- usually a gynaecologist or an endocrinologist.
Treating PCOS
Unfortunately, there is no cure for PCOS, nor is there one treatment. Treatment is therefore aimed at managing individual symptoms. The good news is that many of the symptoms and health risks can be managed successfully through a combination of medical assitance, good nutrition, exercise and adopting a generally healthy lifestyle. This will also help reduce your long term health risks.
Source- Verity- The UK PCOS charity- (verity-pcos.org.uk)