You've heard the term PCOS being thrown around in conversation before; it's got something to do with ovaries and it can affect fertility, but your knowledge, if you or a loved one doesn't have it, probably stops there.
For a condition that is comparable in prevalence to asthma in kids, Polycystic Ovary Syndrome is seldom talked about.
And while we've seen more and more women speak up around reproductive conditions in the past year, particularly those living with endometriosis (Lena Dunham, Jackie O and Hasley to name a few) PCOS doesn't get nearly as much air time.
"The problem with Polycystic Ovary Syndrome is that a lot of it goes undiagnosed," Dr Roisin Worsley, an endocrinologist at Jean Hailes For Women's Health told The Huffington Post Australia.
As with most underdiagnosed conditions, it comes with a lack of awareness. What makes things even more difficult is the variability and vagueness of symptoms in those living with the condition.
So, what is Polycystic Ovary Syndrome? It's a hormonal disorder characterised by several symptoms that are caused by high levels of androgens, or 'male' hormones, the main one being testosterone. Basically, for many women with PCOS, their hormones are out of balance.
Insulin resistance can also play a role, too. "Because the insulin is not working effectively, the body produces more insulin. These high levels can increase the production of androgens such as testosterone, in the ovaries," Dr Worsley said.
The name also suggests you might have multiple cysts on your ovaries but that's not always true. Which is where it gets complicated.
"Not all women who have PCOS have multiple 'cysts' and not all women who have multiple 'cysts' have PCOS," Dr Worsley said.
More on that shortly, but let's get to what these 'cysts' actually are.
"Usually, with a normal menstrual cycle you'll get multiple follicles developing and then one follicle will become the dominant follicle (it will grow the biggest and have an egg that matures and gets released) while the other follicles just tend to die away. But in PCOS you don't have one follicle becoming the dominant one, and there aren't any follicles that mature enough to release an egg, so you just end up with multiple little ones, that can eventually form into multiple cysts," Worsley said.
No two women have the same set of symptoms and it can be quite hard to make a call in the end because each patient's symptoms are so varied.
Experts agree the condition affects between 12 to 18 percent of women of a reproductive age in Australia.
Though getting a diagnosis is far from straightforward and often the woman has placed a lot of guilt on herself due to the misconception that PCOS is a lifestyle disease. It's not.
"No two women have the same set of symptoms and it can be quite hard to make a call in the end because each patient's symptoms are so varied," Worsley said.
Some symptoms are mild, while others are extreme. Sometimes testosterone levels are normal, sometimes they're not. And sometimes the ultrasound will be negative.
"The other potential issue we face is that perhaps people think that if you're not trying to have a baby then maybe it's not that important to diagnose, which obviously isn't true," Worsley explains.
Here's what you need to know about the condition.
A PCOS diagnosis does not equal infertility
"The major misconception around polycystic ovary syndrome is that they won't be able to get pregnant, and that they're definitely going to need IVF," Worsley said.
This simply is not true. Sixty percent of women living with PCOS get pregnant naturally, while the rest won't necessarily need IVF, though may require some lower level fertility treatment.
In fact, Worsley explains an Australian study found women with PCOS ended up with the same number of children without PCOS.
Not all women with PCOS have cysts on their ovaries
When the condition was first discovered in the 1930s women had quite severe symptoms and they all had cysts on their ovaries. "However, since there's been more research we've found that you can actually have all of the symptoms such as the irregular periods, excess testosterone and hair growth and have completely normal looking ovaries on ultrasounds," Worsley said.
Sadly though, whether you have polycystic ovaries or not doesn't determine your symptoms.
Speaking of, there are quite a few symptoms
Each of them fall roughly into four categories; periods and fertility; hair and skin; mental and emotional health; and sleep.
- No periods, or periods that are irregular, infrequent or heavy.
- Multiple cysts on the ovaries
- Difficulty becoming pregnant
- Excess facial and/or body hair
- Acne on your face and/or body
- Scalp hair loss (alopecia)
- Darkened skin patches (acanthosis nigricans)
- Mood changes
- Sleep apnoea (a sleep disorder where there are abnormal pauses of breathing during sleep)
Source: Jean Hailes For Women's Health
"Often we're looking for someone who has an extreme level of symptoms but actually you can have quite mild symptoms," Worsley said.
For example, just because somebody has clear skin with no signs of acne doesn't mean they're immune to the condition.
So how is PCOS diagnosed?
A correct diagnosis of polycystic ovary syndrome is made when at least two out of three of the following criteria are met:
The ovaries are "polycystic" because:
- 12 or more follicles are visible on one ovary or
- the size of one or both ovaries is increased
- high levels of 'male' hormones (androgens) in the blood (hyperandrogenism)
- symptoms suggesting an excess of androgens such as:
- excess hair growth
There is menstrual dysfunction such as:
- lack of periods or menses (menstrual flow)
- menstrual irregularity
- lack of ovulation (where an egg is released)
While the cause of PCOS is unknown, Worlsey explains there are connections with family history, insulin resistance and lifestyle or environment.
Immediate female relatives (i.e. daughters or sisters) of women with PCOS have up to a 50 percent chance of having PCOS.
Many women feel as if their symptoms are their own fault, i.e. their acne is due to the wrong skincare regimen or their period pain is due to poor diet. A diagnosis helps to take that blame away.
"Often there is a sense of relief after a diagnosis because there is a lot self-inflicted blame," Worsley said.
What are the treatment options?
Currently there are three main medical treatment options that do not cure the condition, but help manage it.
The first port of call is ensuring the patient is as fit and healthy as possible, so looking at diet, exercise and general wellbeing, Worsley explains.
"That's really the start and then the rest of the treatments focus on what the symptoms are."
Sometimes if there's really quite profound psychological symptoms they might also need to see a psychologist.
The most commonly used treatment option is the Pill.
"What the Pill mainly does is control cycles and ensures the woman is having at least four cycles a year," Worsley said.
It also helps clear skin as it reduces testosterone levels by about 50 percent.
The next treatment option is the diabetes medication Metformin.
"It works in a few different ways but one of the things it does is reduce insulin levels which can be higher in women with PCOS," Worsley said.
"It also helps with weight loss -- on average women lose about three kilograms -- and it also dampens down appetite."
The third arm of treatment is one that blocks testosterone as well as specific medications that can help with both skin and hair.
"I often tell my patients that we can try all three, in whichever order that suits them."
Often though, many women wish to try alternative avenues such as herbal medicine despite there being little evidence to say such treatments work.
Moving forward, awareness is key
Worsley explains one of the issues is the lack of treatment options available to women.
"While the symptoms are variable, they are chronic and ongoing," Worsley said.
The emotional and mental trauma women experience, as well as the physical symptoms should not be discounted.
"There's a lot of women who have low level depressive or anxiety symptoms that go on all the time," Worsley said.
It might be due to anxiety about the condition itself, about fertility, their appearance or something not necessarily directly related."
Worsley spends a lot of time explaining to her patients that everybody is different and that the process of finding treatment isn't so straightforward.
"While some treatment options may work well for some people, it doesn't always mean they will for others."
Being aware of that, and rejecting the notion that any symptoms are "normal" (they're far from it) is the first step to ensuring a better approach to a condition that so many women currently live with.
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