You probably know someone who suffers PCOS. Here are the facts.

Image: Jessica Rowe is an outspoken PCOS sufferer.

Polycystic Ovarian Syndrome (PCOS) is anything but glamorous. Ovarian cysts, insulin resistance, facial hair, potential infertility …they’re not exactly words women everywhere are dying to hear.

Despite celebrities like Jessica Rowe, Victoria Beckham, and Emma Thompson going public with how the syndrome has affected their lives, PCOS is still not widely understood. It’s not sexy to think about, and the long-term consequences are hard to comprehend. But 1 in 10 women have this condition, often unknowingly.

So why the hell aren’t we all talking about it more?

We turned to Holistic Nutritionist, Dietician, Personal Trainer and Lifestyle Coach Kate Callaghan, and Sydney Endocrinologist Dr Katherine Benson for some answers. (Watch: Five things about PCOS with Mamamia TV. Post continues after video.)

What is PCOS?

“Polycystic Ovarian Syndrome is one of the most common hormonal problems faced by women, and is a key player in many cases of infertility,” Callaghan says.

Dr Benson explains the syndrome is characterised by hormone imbalances: “Androgen (male hormone) and insulin levels are typically elevated in women with PCOS. This hormonal imbalance can cause women to have irregular or absent periods, problems with fertility, acne, excessive facial hair and hair thinning. “

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What are the symptoms?

While only a doctor can give a confirmed diagnosis, there are a few common symptoms both Callaghan and Dr Benson agree you should look out for. “These usually begin around the time of adolescence, although some women do not develop symptoms until late adolescence or early adulthood,” Dr Benson says. They are:

• Absent or irregular periods
• Increased body hair growth (often in less-than-desirable places, including the upper lip, chin, breasts and back).
• Alopecia- Hair loss from the scalp
• Acne
• Difficulty falling pregnant
• Difficulty losing weight

How do I get it diagnosed?

Unfortunately, there is no one test to determine whether you have PCOS. In Callaghan’s experience: “PCOS is often a diagnosis of exclusion, which means all other causes of menstrual irregularities must be first ruled out, such as pregnancy or thyroid conditions”.

Dr Benson explains that PCOS is generally diagnosed when two of the following three features are present : 1) evidence of elevated androgen levels, 2) menstrual irregularities, and/or 3) the appearance of polycystic ovaries on a pelvic ultrasound. She agrees with Callaghan that a number of other conditions need to be excluded first.

What causes PCOS?

“The cause of PCOS is not completely understood, though both genetic and lifestyle factors contribute. It is thought that abnormal levels of the pituitary hormone luteinizing hormone (LH) lead to high levels of androgens and interfere with the normal function of the ovaries. Insulin resistance also plays an important role in PCOS, with high insulin levels leading to increased androgen production, ” Dr Benson says.

So, what do the cysts on my ovaries have to do with it?

Well, not as much as you’d expect from the name. Some women with PCOS have multiple cysts, while, confusingly, others with the condition have none at all. Dr Benson explains why this is the case. “The condition was first described in 1935 by American gynaecologists Stein and Leventhal. They observed cysts on the ovaries in women with menstrual difficulties, acne, facial hair and weight gain. It is now understood that these ovarian ‘cysts’ are actually follicles (eggs) arrested in mid stage development, and they are not the cause of the disorder. For this reason, the name ‘PCOS’ is a little confusing and is now being reconsidered by international experts and women’s health groups,” she says.

How will PCOS affect me long term?

Women with PCOS should be wary of their increased risk or developing insulin resistance and/or Type 2 diabetes. “Insulin is a hormone produced by the pancreas to lower blood glucose levels by promoting the uptake of glucose from the bloodstream into the cells. In up to 80% of women with PCOS, the cells are resistant to the action of insulin. The pancreas then tries to compensate for this insulin resistance by producing more insulin. Over time even high levels of insulin are ineffective, and diabetes can develop,” Dr Benson says.

It can also be challenging to conceive a child naturally due to infrequent ovulation. To those wishing to fall pregnant, Dr Benson warns of an increased risk of gestational diabetes developing during pregnancy. For this reason, she advises pregnant women with PCOS to have a 2hr Oral Glucose Tolerance Test performed early in pregnancy .

Conditions including sleep apnoea, a fatty liver, depression, anxiety and cardiovascular disease are also more likely to develop in those with PCOS. Dr Benson adds, “Though very rare in women with PCOS, women who do not menstruate at least four times a year are at a slightly higher risk of endometrial cancer due to a buildup of the endometrial lining of the uterus.”

Is there a cure?

Though there is no ‘cure’, Callaghan has seen the degree of insulin resistance and severe PCOS symptoms reduce in her clients who have made positive lifestyle changes and lost weight if overweight. Dr Benson agrees: “Whilst not all women with PCOS are overweight, excessive weight gain will worsen the degree of insulin resistance and the symptoms of PCOS. In women who are overweight, just modest weight loss (5-10% of body weight) can significantly reduce PCOS symptoms and long-term complications.” She points her patients towards current exercise recommendations advising 150 minutes of moderate to high intensity exercise per week.

To those trying for a baby, Dr Benson advises, “a healthy diet, exercise, and losing a few kilograms if overweight will improve the chances of conceiving naturally. Planning to begin a family before the age of 35, if at all possible, will also increase the chances of pregnancy. A range of fertility treatments including the use of drugs such as Clomiphene Citrate, Metformin and Letrazole may otherwise be prescribed.”

OK I’ve been diagnosed. Now what?

Callaghan believes the first step is to calm down: “High stress levels are associated with increased testosterone and increased cortisol levels, which can cause problems with insulin resistance. First focus on all the wonderful changes you can make to your diet and lifestyle that will help improve your health. Try starting your day, lying in bed, with 10 slow, deep belly breaths, feeling your tummy rise and fall as you breathe”.

The next step is to get on top of insulin resistance. “Insulin resistance can be improved through moderate exercise and minimising refined carbohydrates,” Callaghan says. She advises her clients to load up on fresh veggies to boost their metabolisms, include protein with every meal for satiety, and to get lots of omega-3 fatty acids to lower inflammation in the body. Cutting down on the sugar is also a must: “I have seen huge improvements in PCOS when people remove sugar from their diet,” Callaghan says.

Doctors may also prescribe medications such as oral contraceptives to regulate menstrual cycles, reduce excess hair growth and improve acne, or Metformin to reduce insulin resistance and aid in weight loss efforts.

Further resources:

The bottom line? There is hope. But you need to get on top of your health fast, take care of yourself, and listen to your doctors. There are a wide variety of support services and helpful online resources out there ready to help you tackle PCOS head on. You’re definitely not alone. Check them out below:

-Polycystic Ovary Syndrome Association of Australia
-Jean Hailes for Women’s Health 
-Diabetes Australia

Do you know anyone who has PCOS?

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