What You — And Your Teenage Daughter — Need To Know About PCOS
When you’re talking teen girls, and talking hormones, it’s hard to know what’s normal and what’s worthy of further investigation.
And that’s why getting diagnosis and treatment for a condition called PCOS — Poly Cystic Ovarian Syndrome — can be so tricky, even though it’s something that an estimated 1 in 10 women in the UK suffer from.
‘It’s something that is diagnosed really badly and often not picked up as not enough is understood about the condition, and the fact that it can present in many different ways — not everyone will have all the same symptoms, and some people may only have one of them,’ says Dr Amalia Annaradnam of the London Hormone Clinic.
‘PCOS is a condition that’s related to an imbalance in your hormone levels which stems from a genetic predisposition in women to be insulin resistant,’ she explains.
(In case you missed the biology lesson on what insulin is and what it does….Insulin is a hormone that’s produced by the pancreas, usually in response to you eating something that raises your blood sugar levels. Insulin’s role is to lower the level of sugar in the bloodstream, help the body store that sugar in your liver, fat and muscles, and also regulate your body's metabolism of carbohydrates, fats, and proteins. So in the great scheme of things, it’s quite important.)
‘When you have PCOS, it’s not because of something you eat or do, it’s down to the fact that genetically your body does not respond to the insulin that is being produced in your pancreas, and so your body produces more insulin.’
As all of the hormones in the body are interconnected, high levels of insulin have a knock-on effect on the other hormones.
‘Excess insulin drives up testosterone and DHEA (often known as male hormones or androgens) and that’s what causes some of the symptoms that are associated with the condition,’ explains Dr Annaradnam.
‘Symptoms of PCOS include irregular or absent periods, acne, excess hair on the face, arms or nipples, thinning of the hair on the head, weight gain, and difficulty losing weight, as well as multiple small cysts on the ovaries [which give the syndrome its name], which can be seen via an ultrasound,’ says London-based GP, Dr Zoe Watson. ‘But as irregular periods can be quite normal in teenagers who have just started having periods, as can acne, one of the key things is actually noticing and questioning the symptoms, which I think can be harder for teens as they might be embarrassed to talk about it.’
Dr Claire Ashley, a GP from Bristol who has PCOS herself agrees that it can take ‘several months, if not longer, to ovulate regularly and develop a regular cycle’ but if, a year after starting her periods, your daughter still doesn’t have a regular cycle, and has any of the other symptoms, it might be worth getting things checked out.
Dr Watson says that if you do suspect PCOS, it’s not actually that hard to diagnose.
‘The diagnostic criteria for PCOS that we use in medicine is called the Rotterdam Criteria, which essentially states if you have two out of the three diagnostic criteria then you have PCOS - those three things are: absent or irregular periods; evidence of raised androgen levels (excess body hair, acne etc - or indeed a blood test which shows raised androgen levels): polycystic ovaries seen on ultrasound scan.’
But, in order to get a diagnosis in the first place, you’d have to go to a doctor, and with teens, not only might you confuse the symptoms with ‘just being a teenager’, but actually making that diagnosis isn’t always as straightforward as it might be in older women.
‘PCOS is often not diagnosed until a woman is in her 20s or 30s and trying to conceive, as the condition can mean that it’s harder to get pregnant,’ says Dr Ashley. ‘It would be normal to do a blood test, in the first five days of her cycle, that looks at levels of three hormones — Luteinising Hormone and Follicle Stimulating Hormone, as an imbalance in the ratio of those two hormones can indicate PCOS, and testosterone which is often raised with PCOS — as well as an internal ultrasound that would show any cysts on the ovaries.’
However, she points out that one of the issues with diagnosing teens is that these approaches can seem very daunting.
‘If you have a teen who’s never had a blood test before and is scared of needles, that can be very intimidating. And if a girl is not yet sexually active, it wouldn’t be appropriate to do an internal scan.’
PCOS isn’t something that goes away — so once you’ve been diagnosed, it’s a question of managing the condition, and in some cases, treating the symptoms.
‘Insulin resistance is what drives the problem, and so for me, the key is to try to improve that,’ says Dr Annaradnam. ‘We know that being overweight compounds insulin resistance, and so if a patient is overweight, I will often talk to them about combining exercise with a low-carb diet — and/or intermittent fasting to try to get their weight down, which can improve things.’
However, Dr Ashley flags that while when you’re trying to lose weight, it can be tempting to go hard on the exercise, that’s not always the best idea.
‘A lot of high intensity exercise can lead to high levels of another hormone, cortisol, and that can have a knock-on effect on the other hormones in your body as well, further complicating things, so you need to make time to do exercises such as yoga that will lower cortisol levels.’
But, while in theory losing weight can be part of the solution, with PCOS it can be a bit of a vicious cycle, as one of the symptoms is an inability to lose weight. That’s the point at which Dr Annaradnam might prescribe a drug called metformin, a drug that is often prescribed for diabetes.
‘Metformin lowers your blood sugar levels by improving the way your body handles insulin, it also drives down testosterone levels, and can help to regulate your menstrual cycle, and help with fertility issues,’ she explains. When prescribed to treat diabetes, metformin is usually a long-term solution that patients have to take for life, and it’s possible that the same is true if you take metformin to treat PCOS, but this is something you would need to discuss with your doctor.
While metformin treats the root of the problem, it isn’t the only solution and other drugs may be used alongside it, or instead of it, depending on the patient.
’Spironalactone can be a useful treatment for PCOS patients who are suffering from acne, hair loss or excessive hair as it’s an androgen blocker so if you have these symptoms because you’re sensitive to testosterone, or have high levels of testosterone, they can improve with the treatment. However it’s not appropriate for women who are trying to conceive or who are pregnant,’ says Dr Annaradnam.
Other hormonal solutions that might be offered include the contraceptive pill.
‘The combined pill can be really helpful for young women who aren’t trying to conceive,’ says Dr Ashley. ‘It can regulate your cycle so it becomes predictable — although technically the withdrawal bleed that you have is not a period, and you can take the pill without a break and not have a bleed — and it can also be helpful in the management of acne.’
She points out that another reason that women may not be diagnosed until they are in their 20s and 30s is because the pill can mask the symptoms.
‘If a girl goes on the pill at the age of 16, it may be that the symptoms of PCOS have not yet had time to become apparent, so it might not be until they take a break from the pill, or try to conceive, that it becomes evident.’
Aside from drugs, excess hair growth can be treated with waxing or, more long-term, with laser treatment, although this is unlikely to be available on the NHS. And Dr Annaradnam also recommends a supplement called myo-inositol to patients. It’s available over the counter and has been shown in trials to improve some of the symptoms associated with PCOS.
So, once you’ve been diagnosed with PCOS, and you’ve treated some of the more immediate issues that are having an impact on your day-to-day life, what do you need to know about how it’s going to affect your future health?
Well for a start, while the cysts — technically small egg follicles that do not grow to ovulation stage — that give the condition its name sound worrying, the good news is that they’re not actually dangerous, and they’re not a risk factor for cancers. But beyond that it varies from person to person.
‘In terms of health implications, we know that people with a PCOS diagnosis are at an increased risk of developing type 2 diabetes, as well as having an increased risk of developing heart disease,’ says Dr Watson.
This is why trying to maintain a healthy diet and a healthy weight, while important for everyone as we age, is even more important if you’ve had a PCOS diagnosis. As is considering your fertility sooner rather than later.
‘Having PCOS doesn’t necessarily mean that you will automatically struggle with fertility,’ she says. ‘However we do know that it is a common cause of infertility - primarily due to the fact that women with PCOS don’t ovulate as often as women without the condition. That said, treatments for women with PCOS who are struggling to conceive are usually quite effective, and focus on triggering ovulation.’
One of those treatments might be metformin, mentioned above, but patients may also be referred to a specialist for a drug called Clomid which stimulates ovulation.
While you might have PCOS for life, it’s very definitely not a life sentence. While it’s still not brilliantly understood, there are more treatments than ever available to treat it, and its symptoms.
It just starts with getting a diagnosis.