We know it’s Polycystic Ovarian Syndrome…. But what does that mean?

PCOS (polycystic ovarian syndrome) is one of the most common hormonal problems in women and affects somewhere between five to ten percent of women, depending on where and how the study is done 1. The thing about PCOS is that as the name implies, it’s a syndrome rather than a disease.

From the National Institute of Health: “a syndrome is a recognisable group of symptoms and physical findings which indicate a specific condition for which a direct cause is not necessarily understood”. This is different from a disease where there’s more likely to be a distinct cause for a particular symptom- for example shortness of breath caused by temporary narrowing of the airways. So simple! As you can imagine, this means that polycystic ovarian syndrome has a lot of different parts to understand.

It's hard to know why PCOS happens to some people and not others (like a lot of things in life), but we know that there is a strong genetic component. Looking at different populations, about a quarter of women with PCOS will have a mum with PCOS. Another study showed that daughters of women with PCOS were five times more likely to develop PCOS when compared to the daughters of women with no PCOS 2,3,4. At the moment we think that in addition to being genetically prone to PCOS, there’s an extra “thing” that needs to happen to your genetic system in order to turn the PCOS genes on. The hope is that one day we will figure out what those “things” are and influence these genes in a good way.

What kinds of symptoms go with PCOS?

The kinds of symptoms that people with PCOS might have are

1) Not having regular monthly periods

2) Having symptoms that indicate too much testosterone (a hormone usually found in higher levels in men), such as excessive body and facial hair growth, and acne.

3) Struggling to get pregnant

There are some other things associated with PCOS that we will talk about later (such as difficulty with managing body weight, higher blood sugar levels and depression), but the first things that people tend to go to their doctor with are the things listed above.

To get a diagnosis of PCOS, you need to have two out of the following three criteria which were hammered out and agreed on in Rotterdam in 2003. These are the “Rotterdam criteria”5.

1) No periods or infrequent periods

2) Physical changes or blood tests that show too much testosterone

3) An ultrasound that shows polycystic ovaries (these are lot’s of tiny cysts within the ovary-quite different from the big cysts most people think of when we talk about ovarian cysts)

There is a lot of discussion about the criteria and thoughts about revising criteria or renaming the condition to be more precise and to include people with fewer symptoms who are still struggling and need medical help. This just goes to show that as humans our hormones work differently and we’re all on a spectrum of “different-ness”. With PCOS we’re still trying to decide what’s within the realm of “normal” and what’s not.

What about PCOS changes your periods?

Your ovaries are full of “primordial follicles” that could become the chosen follicle that ovulates in any given month. Follicles are tiny sacs of fluid containing one egg, but if they happen to be “the one”, they grow bigger until you ovulate and release the egg (they can get up to 3cm before ovulation). The cyst left behind after ovulation is called the Corpus Luteum and produces progesterone. Whenever you get an ultrasound, little follicles (sometimes labelled cysts on the scan reports) can be seen. These come, grow and go throughout the month. As doctors looking after women in their fertile years, we only act if an ovarian cyst is too big, doesn’t go away, has worrying features or there are too many.

 All women make some testosterone in their ovaries but if there is too much, there’s a flow-on effect on your hormonal system and that magical thing where one follicle is chosen to grow doesn’t always happen and you get a whole lot of little follicles that get “stuck” in their development. This is why the ovaries become “polycystic”.

 This absence of the chosen follicle (confusingly called many things like- the mature follicle or ovulation cyst or graafian follicle) means you don’t ovulate each month, you don’t get a progesterone burst and your periods don’t have a nice predictable and regular pattern. (link to the first article- the cycle 101) 

About 90 % of women with PCOS have too much testosterone and might have the following period pattern 6.

1) Fewer than nine periods in a year

2) Not having periods for up to three months in a row for no other reason.

 This is a really important feature in PCOS.

Why can fertility be a problem in PCOS? 

The process described above is exactly why people with PCOS might struggle to get pregnant. If you ovulate every month, that’s usually around 12 times a year where you have a chance at pregnancy and you can usually guess when your fertile days will be and have lots of sex at those times (if you’re wanting a baby). In PCOS, you will have fewer chances a year where you might get pregnant, and it’s not as easily predictable as for other people. Luckily there are other changes that can tell you you’re ovulating:

1) Ovulation predictor kits (OPKs)

2) Cervical mucus monitoring, breast tenderness

3) Basal body temperature (BBT) tracking

 There are also really effective medications to help you ovulate and of course, other more intensive fertility treatments.

What other things can happen in PCOS?

 More about high testosterone

 Because 90% of people with PCOS have higher testosterone than usual, this is a really important part of the syndrome. We’ve talked about the effect of testosterone on ovulation, but different parts of your body respond differently to testosterone.

 In the skin it can cause acne and excessive hair growth. Both of these things can cause high distress for people. There are many options to treat these conditions.

1. Hormonal birth control pills. These pills decrease testosterone production and over 4-6 months might make a noticeable difference

2. Spironolactone. This blocks the effect of testosterone on the skin, but is not safe to use in pregnancy (you need really good contraception if you take it)

3. Cosmetic hair removal or bleaching

4. Acne treatments. Creams containing medicines like retinoids, benzoyl peroxide and antibiotics, tablets that contain retinoids or antibiotics and procedures like chemical peels or laser therapy, depending on severity.

Insulin resistance

 Insulin is the hormone that tells your cells to absorb glucose (the building block of sugar) for energy. If there is more sugar around than you need, your body will store it as fat.

 About one half of people with polycystic ovarian syndrome have insulin resistance- meaning some parts of their body don’t respond very strongly to insulin. Their body then responds by making higher levels of insulin which helps in some ways, but it also promotes the creation of fatty tissue, which in turn makes insulin resistance worse and contributes to one of the common PCOS problems- difficulty managing weight.

 Other areas of your body (such as your ovary) remain very sensitive to insulin. In the ovary, the high insulin level aggravates high testosterone and drives the development of polycystic ovaries and reduced ovulation, as described above.

 Metabolic syndrome

 This is a cluster of findings that are more common in women with PCOS and their family members 6.

1) Increased blood pressure

2) High blood sugar

3) Excess body fat around the waist

4) High cholesterol

 It is important that you have good monitoring with your general practitioner and most importantly, do your best to exercise and eat healthily.

Endometrial hyperplasia and cancer

Don’t panic!! This is one of the much longer-term risks of PCOS that can be very easily managed.

Progesterone is the hormone that suppresses the growth of endometrium (lining of the uterus). If you don’t ovulate frequently, over decades you have less progesterone in your system and there’s a higher risk of getting endometrial cell changes (hyperplasia) that can over time turn into cancer. While this sounds scary, in real terms if you took 10,000 women under the age of 50 and watched them for a year, only 1.3 extra women would get endometrial cancer because of PCOS 7. Even so, your doctor will likely suggest that you consider hormone pills ( often birth control pills) or the Mirena to decrease this risk back down.

Mental Health

Depression and anxiety are common across the board at the moment, but studies show that people with PCOS may be more likely to have depression and anxiety than those without PCOS 8.

I think it makes sense given the kind of struggles you may be facing, but also the underlying hormonal imbalance may have a role to play in mood, as well as the need to take long term medications and other treatments.

 Keep in mind this is not a fixed problem- the things you do have a big impact on your feelings, for example it has been shown that exercise and weight loss improve mood for people with PCOS9.

 Make sure you take time to consider how you’re feeling and if you are feeling low, have decreased interest in fun things in your life or you're not sleeping well, reach out to your family doctor, friends and family and ask for help.

 Weight

When it comes to weight management, it's not easy for a lot people- and it can be more difficult for people with PCOS. There’s no question that keeping a healthy weight is one of the most effective things everyone can do to improve our health, but it has also been shown that in PCOS, losing 5-10% of your body weight can restore normal ovulation cycles 10,11.

 The mainstay of weight loss is still healthy diet and exercise, but weight loss drugs are becoming more available, as is bariatric surgery. These might be suitable for you depending on the severity of your weight problem but are not without risk and should be discussed fully with your doctor.

 Metformin

 Right now, international guidelines “conditionally recommend” that we should consider Metformin to help with weight, blood sugar and cholesterol management but the research around how much it actually helps is not clear. It’s unlikely to be a magic wand, but it could possibly help to varying degrees, especially if your weight or blood sugar levels are above normal.

 Finally

 So there you have it. PCOS in a nutshell…. Or maybe more in a handbag! It’s not the easiest thing to break down.

 If I could give just a few points of advice to people who have this diagnosis it would be

 1) Don’t feel alone. Many, many people are quietly dealing with PCOS- it just hasn’t had the same level of publicity that other gynae conditions have had.

2) Try your best to regulate your periods with hormones for your quality of life and so you control your risk of endometrial problems in the future.

3) If you want children (especially if you want more than one) try to give yourself plenty of time to achieve this

4) See your GP regularly in your adult years so that your blood pressure, blood sugar, weight and cholesterol are optimised

5) Try your best to be healthy with your eating and activity to keep your weight in check- easier said than done I know!! If you’re struggling, explore getting professional help (gym, personal trainer, GP, dieticians or weight loss specialists).

6) Look after your mental health. This isn’t something that we’re always taught how to do as we grow up, but it’s a skill you can learn. Eating, drinking, sleeping and exercising well are the first steps, plus learning about any unhelpful thinking patterns so you can work on improving them. As Shakespeare wrote “There is nothing either good or bad but thinking makes it so”. After meeting so many amazing patients who learn to live with extraordinarily difficult things (even cancer) I know this to be true.

For more trustworthy information and excellent resources to help you, try this app. It was made by the people who developed the International Evidence-based Guideline for the Assessment and Management of Polycystic Ovary Syndrome 2003 at Monash University and is based on solid research.

https://mchri.org.au/guidelines-resources/community/askpcos-app/

1) Human Reproduction February, issue 31, volume 12, pages 280-295.

2) Leibel  et al. Fertil Steril. 2001;75(1):53. 

3) Sam et al. Proc Natl Acad Sci U S A. 2006;103(18):7030. Epub 2006 Apr 21. 

4) Risal etal. Nat Med. 2019;25(12):1894. Epub 2019 Dec 2. 

5) Revised 2003 consensus on diagnostic criteria and long-term health risks related to polycystic ovary syndrome (PCOS). Hum Reprod 2004; 19:41.

6) Rosenfield et al. Endocr Rev. 2016;37(5):467. Epub 2016 Jul 26. 

7) Gottschau et al. Gynecol Oncol. 2015 Jan;136(1):99-103. 

8) Barry et al. Hum Reprod. 2011 Sep;26(9):2442-51. Epub 2011 Jul 1. 

9) Thomson et al. Fertil Steril. 2010;94(5):1812. 

10) Pasquali et al. J Clin Endocrinol Metab. 1989;68(1):173. 

11) Kiddy et al. Clin Endocrinol (Oxf). 1992;36(1):105.