Living with PCOS 

PCOS is generally characterised by three key symptoms: androgen excess, anovulation and polycystic ovaries. There are multiple ways of diagnosing PCOS but all of them focus in some way or another on these three symptoms. In addition to the three core symptoms, there are many other ways that PCOS presents itself and can affect the life of those suffering from it. PCOS also carries several long term health risks that are more serious than its immediate symptoms, such as cancer and diabetes. Lastly, life with PCOS is difficult in many ways that aren’t always recognised or discussed from a medical perspective. Here we explain what the challenges of living with PCOS are and why they arise.

On This Page

• PCOS and Androgen

• PCOS, Ovulation and Fertility

• PCOS and Polycystic Ovaries

• Diagnosing PCOS

• PCOS and Diabetes

• PCOS and Cardiovascular Disease

• PCOS and Cancer

• PCOS and Mental Health

Androgens are a group of steroid hormones produced by the body. The most important androgen is testosterone but there are several others too. Although androgens are mostly associated with males, they are also present in every woman, albeit at a lower level, and are essential to proper female development and function. Androgen excess and PCOS are very closely linked, but neither are essential to each other. Between 50 - 75 % of all PCOS sufferers have excess androgens. On the other hand, about 80 - 85 % of women with excess androgen have PCOS. So it is possible to have excess androgen without PCOS, or PCOS without excess androgen. It is thought that excess androgen in PCOS women develops mostly due to insulin resistance and excess insulin production, but it is likely that there are other factors involved.

Excess androgen in females causes a number of symptoms which are often how women first recognise PCOS:

• Hirsutism is the term for increased growth of thick, dark hair in areas associated with male hair growth, such as the face, the chest, the back, or the buttocks. Elevated levels of circulating testosterone are converted into dihydrotestosterone in the hair follicles. Dihydrotestosterone is responsible for stimulating hair follicles and cause the hair to grow thicker and darker. It also causes hair follicles that would normally produce small, soft, colourless hair to convert into follicles that produce hair like on your head. Hair growth is one of the easiest and most reliable ways for doctors to diagnose excess androgen. The hair growth can be measured using a scale called a Ferriman-Gallway score. Although not dangerous, hirsutism can be a significant source of anxiety, stress and unhappiness for many women. Hirsutism treatments work by reducing testosterone levels.

• Acne is one of the most common skin disorders and is another indicator of excess androgen. Acne is caused by excess activity of glands in your skin called sebaceous glands. Sebaceous glands produce important oils that help your skin to function properly, however excess production of these oils can lead to acne. Normally, androgens circulating in your blood interact with the sebaceous glands to control how much oil is produced. For PCOS sufferers, the increased levels of androgen in their blood leads to over-activity of the sebaceous glands, often resulting in oily skin and acne. Like hirsutism, Acne can also be a source of anxiety and stress. Acne treatments usually reduce testosterone or use antibiotics.

• Ovulation is interrupted by excess androgen, causing reduced fertility and menstrual dysfunction. The excess androgens prevent a chemical called aromatase that is released by the ovary during the early stages of ovulation from functioning properly. Reduced aromatase activity prevents ovulation from progressing further. This results in no egg being released and an interrupted menstrual cycle. Menstrual dysfunction and fertility can both be treated.

Excess androgen drives many of the symptoms of PCOS that can be most distressing for sufferers. For that reason, treatment and management of PCOS often focuses on reducing androgen production, either with drugs or by reducing excess insulin through lifestyle changes.

Interrupted ovulation, known as anovulation is when something causes the normal cycle of releasing an egg from the ovaries to be stopped. Anovulation is the primary cause of reduced fertility in PCOS.

During normal ovulation, small bumps on the outside of the ovaries form, called follicles. Once the follicle is fully formed, the ovary will release an egg from the follicle and then it will fade. This is a very complex system that requires lots of communication from the ovaries with the rest of the body.

For women with PCOS, the development of the follicle is disrupted due to a combination of excess insulin, excess androgen and altered signalling from the ovary. This results in a small pre-follicle being left on the outside of the ovary and causes reduced fertility and defective menstruation. Irregular periods are often what people first notice about PCOS, leading to a diagnosis when they see a doctor about it.

Interruption of ovulation appears to be caused primarily by excess androgen in the body, but is made worse by excess insulin.

It is very rare for women with PCOS to be completely infertile and luckily there are multiple methods available for doctors to stimulate correct ovulation, after which pregnancy can proceed as normal.

Polycystic ovaries are the third key symptom of PCOS. Polycystic ovaries are where the term PCOS stems from however it is actually named incorrectly! Ultrasound scans of ovaries of women with PCOS show the ovaries to be covered in small bumps, often in chains of about 10 bumps. Although these bumps were first likened to cysts, hence the name, they are actually the unformed follicles that arise during anovulation.

Polycystic ovaries are often, but not always found in women with PCOS. Additionally, about 15 - 30 % of the general female population will also display polycystic ovaries, despite being healthy!

One of the key themes of PCOS, as you can tell from the sections above, is that it presents itself slightly differently in every case, and not everyone will display every symptom of PCOS. This has been an important factor in the development of an effective diagnosis for PCOS and is partly why the exact number of PCOS sufferers in the world is unknown.

There are currently three commonly used methods for diagnosing PCOS, all of which rely in some way on the three key symptoms mentioned above: excess androgen, anovulation and polycystic ovaries.

• The National Institutes of Health (NIH): in 1990 the NIH decided that PCOS was diagnosed by the presence of excess androgen and anovulation, providing that any other diseases that could cause these symptoms were excluded.

• The Rotterdam Consensus: in 2003 at a conference in Rotterdam it was decided that PCOS was diagnoses by two out of three of the following symptoms: Polycystic ovaries, anovulation and androgen excess. This meant that patients without androgen excess could not be diagnosed with PCOS.

• Androgen Excess Society (AES): in 2006 the AES decided that PCOS was diagnosed if the patient had excess androgen and 1 of other anovulation or polycystic ovaries.

There are benefits to all three systems of diagnosis. As excess androgen is so closely related to excess insulin, the NIH and AES methods are very useful for understanding the problems associated with metabolism in PCOS. On the other hand, the Rotterdam diagnosis is very useful in certain ethnic groups that do no have excess androgen, such as eastern Asian populations.

Insulin resistance is central to the development of PCOS, so it is not surprising that one of the major long term complications of PCOS is Type II Diabetes.

Reduced tolerance to glucose, or blood sugar, is a key predicter of Type II Diabetes. In the general population, insulin resistance and reduced glucose tolerance are very associated with obesity. For women with PCOS, insulin resistance is independent of obesity, but it is greatly exacerbated by it. Insulin resistance occurs in 50 - 70 % of women with PCOS, but it occurs in 95 % of women with PCOS who are obese!

Age is another factor that can negatively affect the body’s ability to deal with blood sugar. Around 40 % of all women with PCOS develop Type II Diabetes by the time they are 40. In fact, PCOS increases the likelihood of developing Type II Diabetes by 4 times. However, only 12% of women with PCOS who are not obese develop Type II Diabetes. This is one of the many reasons that managing your body weight is one of the most important things you can do for your short and long term health if you have PCOS. PCOS women with well managed body weight can approach the same insulin resistance as healthy, non-PCOS women.

More about treating PCOS and Insulin Resistance

Cardiovascular Disease is a blanket term for diseases that affect the heart or blood vessels. It is strongly associated with the build up of fatty deposits, called atherosclerosis, inside your blood vessels.

High levels of some fats, such as Low Density Cholesterol (LDL) increase the risk of developing cardiovascular disease. On the other hand, high levels of good fats, such as High Density Cholesterol (HDL) reduces your risk of cardiovascular disease. In women with PCOS, these dangerous fats tend to be much higher and the good fats tend to be much lower. This drastically increases the risk of developing cardiovascular disease.

Surprisingly, these changes in cholesterol levels are mostly seen in women under the age of 45. On the other hand, cardiovascular diseases don’t often develop until after 45. This suggests that the damage done in early life translates to disease later in life. This is another reason why consistently managing your weight is so crucial to your long term health with PCOS.

More about treating PCOS and Obesity

Cancer is the uncontrolled growth of cells in the body, leading to tumours and other malignancies. The link between PCOS and cancer is not very well documented but it is possible that there is a connection between the two and sufferers of PCOS may be more likely to develop cancerous growths.

It is thought that women with PCOS may be more at risk of developing endometrial, ovarian and breast cancer. A 2018 study of around 40,000 women found that there was a significantly increased risk of women with PCOS developing endometrial cancer, however they observed no increased risk of developing ovarian and breast cancer. Other studies have found links to ovarian and breast cancer, but there is still no firm conclusion on the topic.

The reason women with PCOS are thought to be more at risk of certain cancers is strongly related to their hormone levels, in particular their levels of estrogen and progesterone. Estrogen is produced when the ovaries convert testosterone to estrogen. Progesterone is released by the reproductive system after ovulation has occurred. One of the functions of estrogen is to tell the lining of the uterus to start to grow in order to receive a fertilised egg soon. Progesterone does the opposite and tells the lining of the uterus to stop growing after ovulation. Because ovulation often does not occur in PCOS, there is very little progesterone produced. This means that the lining of the uterus can keep growing without being told to stop, which might increase the risk of developing cancer.

The links between PCOS and mental health issues have only been recognised relatively recently and are still being explored. People with PCOS seem to have higher rates of certain neurological issues than normal. The rate of depression among people with PCOS is between 26 - 40 %, the rate of anxiety is around 11.6 % and the rate of binge eating is around 23%.

Mental health may be affected by many things related to PCOS. Firstly, many women experienced a marked decrease in quality of life caused by their symptoms, such as hirsutism and acne as well as obesity.

On the other hand, it is known that there is a link between the amount of circulating free testosterone in women and depression. Higher levels of testosterone in women with PCOS have been shown to correlate with a higher depression score compared to non-PCOS women.

Another study has found a link between PCOS and higher rates of bipolar disorder, although the study was a very small one and much more research is needed to establish a link.

The symptoms of your PCOS do not define or change your worth and beauty as a human being. If you feel that you’ve been experiencing depression, anxiety or any other issues, reach out to organisations such as supportline.org in the UK and see a doctor as soon as possible.

More about treating PCOS and Mental Health