Polycystic ovary syndrome (PCOS) is a common condition that affects how a woman’s ovaries work. It’s difficult to know exactly how many women have PCOS, but it’s thought to be very common, affecting about 1 in every 10 women in the UK.
This article comes to you, directly from a fellow PCOS sufferer. After a recent diagnosis I decided to do my own research to find out what PCOS really means for me, and how I can better understand my body as a result of the diagnosis.
I reached out to some of the top experts in the country with a range of backgrounds from obstetricians to nutritionists, fertility experts, and even dermatologists, to discuss the varying symptoms of PCOS and how people in all stages of life can take control of their diagnosis, and understand when to seek medical help.
What causes PCOS and what are the symptoms I should look out for?
This is the first question I asked Dr Ellie Rayner, a leading obstetrician and gynaecologist, otherwise known as @maternitymedic on Instagram.
"“The exact cause of polycystic ovary syndrome (PCOS) is unknown currently, but it is thought to be related to abnormal hormone levels. It does sometimes run in families, which suggests a genetic link, although specific genes have not yet been identified. If your mother, sister or aunt has the condition then your chance of developing it is increased.”"
This was very interesting for me. My mum had recently pointed out that my Aunt suffered with bad period pains and had symptoms very similar to mine. She was never diagnosed and has since passed away however, it did prompt a discussion with my cousins, and as a result one is taking the first steps in contacting her GP to discuss her own pains which again seem very similar to my own.
"“The most common symptoms are irregular periods, excessive hair growth, acne or oily skin and difficulty conceiving. You have to have at least two out of the following three features to be diagnosed with the condition: irregular periods, polycystic ovaries on a scan and higher levels of male hormones. Just because you have polycystic ovaries doesn't necessarily mean you have polycystic ovary syndrome.” "
says Dr Ellie Rayner.
Thankfully I have not personally experienced any excessive hair growth, which can be attributed to an increase in testosterone levels, however the irregular periods, excruciating period pains and acne/oily skin is something I have suffered with for years now.
One of the main symptoms I have found many women have ignored or presumed normal, is irregular and painful periods. What I have recently learnt is that debilitating period pain is definitely not normal. If your pain is that bad you need to take time off work, or maybe you have to sit in the bath for hours to soothe the pain, then you need to speak to your GP.
How to get a diagnosis of PCOS
According to www.london-gynaecology.com having polycystic ovaries on its own isn’t enough to diagnose PCOS. Clinicians use the Rotterdam criteria, developed in 2003, to make the diagnosis. Women must have at least two out of three of the following issues:
Appearance of polycystic ovaries on ultrasound scan - ovaries have many (more than 12) tiny cysts: Ovarian cysts are small blister-like-lumps (about 5-8 mm) that form on the surface of the ovaries. Women produce an egg every month and these eggs, if not released, may be retained as small cysts. This is usually seen on an ultrasound scan. Polycystic appearance of ovaries is seen on ultrasound scan in 22% of women but only a few of these women will have the "syndrome".
Hormonal imbalance, where the testosterone levels are high on blood tests (Hyperandrogenism): Ovaries produce the "female" hormones, such as oestrogen and progesterone and also very small amount of the "male" hormone, testosterone. When the level of testosterone in the blood goes over a certain level, it can cause some of the common symptoms of PCOS like acne and unwanted hair growth.
Irregular periods: Failure to ovulate every month (anovulation) leading to infrequent or absent periods: Oligomenorhoea means less than six periods in a year and amenorrhoea means no periods at all.
Does PCOS put you at risk for any other conditions?
"“If you have PCOS, you do have a greater chance of developing long-term health problems such as Type 2 Diabetes, high blood pressure and endometrial cancer. If you have PCOS your body may not respond to insulin, the hormone that controls the level of glucose within our blood stream, correctly and this is called insulin resistance. Insulin resistance results in higher levels of glucose. To try and correct this, your body might produce more insulin and it is this higher level of insulin that can cause weight gain, increased levels of testosterone and irregular periods, which can affect your fertility. It is this insulin resistance and being overweight that can also increase your risk of high blood pressure. Irregular periods are one of the features of PCOS and if you have fewer than 3 periods a year, you can be at greater risk of endometrial cancer in later life, so it is important that the lining of your womb is protected using the hormone progesterone."
Says Dr Ellie Rayner.
One of the most frustrating cycles women with PCOS face, is the difficulty in losing weight. PCOS can be managed with lifestyle changes and a healthy BMI but getting to a healthy BMI can be very difficult for women with PCOS as due to the insulin resistance. Women can find it near impossible to lose weight even when exercising and reducing calorie intake.
I am no stranger to this vicious circle. I have been so frustrated that despite an intense exercise regime and a daily calorie intake of 1,200 I had barely lost a single pound after 6 weeks. I knew that something wasn’t right and granted this was before I had even heard of PCOS, but it did answer a lot of questions I had!
What are the treatments for PCOS?
Dr Rekha Tailor one of the UK’s leading non-surgical cosmetic specialists, is keen to emphasise the importance of getting a PCOS diagnosis early so that treatment can be given.
“For years women have suffered in silence with embarrassing symptoms such as acne and excessive hair growth, both of which can have extremely negative effects on their self-confidence and mental health. Consequently, the aesthetic symptoms of PCOS can’t be underestimated. We are fortunate to live in an age in which medical advances mean that there are now more possible treatments for the aesthetics symptoms than ever, it is our job to break the taboos around them in order to help and support women who need to get help.”
According to Dr Ellie Rayner, there is no cure for PCOS however there are medicine and treatments available to help your symptoms and reduce the risk of long-term health problems.
Medicine is available for symptoms such as irregular periods and fertility problems or excessive hair growth. If you are diagnosed with diabetes or high blood pressure, then you will be recommended to make lifestyle changes such as weight loss and exercise and may be recommended medical treatment to reduce your risk of the long-term complications of these conditions.
If you have irregular periods you will be offered the hormone progesterone, either as tablets or as an intrauterine system (IUS) to reduce the chance of developing endometrial cancer in later life.
There are certain over the counter supplements you can buy to help make your PCOS journey a little easier.
Supplementing with myo-inositol has proven to help improve insulin sensitivity, improving glucose metabolism and balancing hormones. In studies, taking 4 grams a day of myo-inositol powder reduces testosterone levels. Testosterone prevents ovulation and increases growth of unwanted hair and acne. It also normalizes luteinizing hormone, enabling ovulation to occur. Overall, it improves not only the symptoms of PCOS but optimizes your chances of conception.
Recent research suggests that folic acid is not only vital for embryonic neural development, but if taken alongside inositol in women with PCOS, it can greatly increase the frequency of ovulation.
Can I make any lifestyle changes to help the symptoms of PCOS?
The question to this is YES absolutely! There are even a few natural remedies you can try.
“Vinegar may help with PCOS. One study demonstrated that a daily tablespoon of apple cider vinegar restored ovarian function in four out of seven women within a few months. Though the reasons for this are unknown.
Marjoram tea may also be beneficial. In a randomised controlled trial, women with PCOS were instructed to drink two cups of marjoram tea on an empty stomach every day for a month. Beneficial effects on hormone levels were observed, which the researchers concluded, may justify the claims of marjoram’s reputation as a natural hormone-balance restoration drug.” Thomas Owens, a representative of GBS Clinic, a health centre advises.
I have recently started taking Our Remedy Moon Swings CBD Oil. Created using a blend of peppermint and clary sage, Moon Swings has been created specifically to soothe menstrual symptoms such as period pain, mood swings, hormone imbalance, anxiety and sleep disruptions.
Dr Michael Mosley, originator of the Fast800 programme advises switching to a healthy, Mediterranean-style diet to help combat the effects of insulin resistance. “Most of us have spent a lifetime relying on sugar and processed carbs to supply comfort and reward, and to enjoy with friends. These are basic psychological needs, and unless they are met in a different way, the decision to cut out sugar will last only until the next moment of stress. For this reason, it is essential to learn to enjoy a healthy, Mediterranean-style diet. This means a diet that features plenty of healthy fats as well as fresh fruits and vegetables, and good levels of protein.”
Driven by twin cycles of testosterone excess and insulin resistance, PCOS can be misery on wheels. Its effects include:
Type 2 diabetes
Loss of fertility
It does not have to be that way, however. With these five steps, you can put the cycle into reverse:
Cut out sugar and refined carbohydrates
Switch to a Mediterranean-style diet
Keep an adequate intake of omega-3 rich foods
How can I combat the effects of hormonal acne?
We asked Aesthetic Nurse Practitioner Khatra Paterson, Director of KP Aesthetics.
“One of the more common symptoms of PCOS is acne with almost 30% of women struggling with this. The high level of hormones called androgens increases inflammation in the skin, leading to cystic acne and breakouts. The onset of cystic acne can also be painful, and it can sometimes lead to scarring. Unlike normal acne, this is much more severe with a longer healing time.
Therefore, it is crucially important that a good skin care routine is maintained, to prevent, treat and control acne. Many of my patients use the ZO Skin Health Acne Prevention & Treatment Program. This includes an exfoliating cleanser, exfoliating polish, oil control pads, sulphur masque and acne control which is benzoyl peroxide. From a professional point of view, I recommend that everybody washes their face twice daily both morning and night, and practises a good skincare routine, suitable to their skin type.
When acne breakouts penetrate deep into the skin, this causes damage to both the skin and tissue below. Acne scarring can be problematic and of course discomforting for the patient, but with our advanced technology of radiofrequency needling treatments such as Morpheus8 – we can significantly improve acne scarring with just a short course of treatments. Morpheus8 functions by causing controlled trauma to the skin, thus triggering the body to generate new cells, to heal the damage caused by acne, to the skin. Those that suffer with severe acne or persisted outbreaks can also be prescribed medication such as lymecycline.”
Why does PCOS affect fertility and what steps can I take if I am trying to conceive?
One of the most upsetting side effects of PCOS is the difficulty of being able to conceive. Although conception may take longer for a lot of women with PCOS, it is not impossible.
“Fertility issues in women with PCOS are related to the irregular or absent release of eggs from the ovary. The key to supporting conception is to stimulate ovulation and one of the most successful ways to do this is to focus on lifestyle changes to restore hormonal cycles. GPs should focus on supporting weight loss as a primary focus for enhancing fertility, as even losing as little as 5% in body weight can result in the return of regular ovulatory cycles and improved conception rates.” Advises Dr Alka Patel a Lifestyle Medicine Physician, GP, Coach, Speaker and Podcaster.
PCOS can make cycle tracking very difficult however, Andy Mahoney, the creator of the new smart wearable thermometer Celsium created this new technology to help women like us, to better understand their menstrual cycles and in turn, have a better chance of conceiving.
When a woman ovulates, her core temperature increases slightly – only by up to 0.5 degrees. If you can spot this slight increase in temperature, you can spot the ovulation window. Your BBT (basel body temperature) is the lowest point your body temperature reaches in a day. It’s a stick in the ground to track temperature increases from, so it’s important to establish it.
However, your BBT typically occurs around 4am when you’re asleep. From there it rises as you pass through different sleep cycles. If you want to track it, historically it would involve waking up at 4am – even the action of waking and moving can raise your core body temperature and so alter the measurement.
Celsium is designed to be accurate and passive. You can wear it overnight and then look at your app in the morning and it will have captured your lowest temperature or your BBT. So you can track when you’re sleeping. It also measures body temperature, not skin temperature, which is the most accurate measurement, and it does it to an accuracy of 0.2 – 0.4 degrees.
If you can track every month you can start to see the patterns.
“Sometimes the temperature tracking method is frowned upon – not because it’s not a good indicator but because people don’t always have good tools. That’s one of the reasons we designed Celsium.
My wife has endometriosis so we went through a fertility journey. She wishes she’d been able to track her BBT in her 20s and she might have been able to spot the signs earlier. Being proactive ahead of time – month after month – is a good indicator of the regularity of your cycle and ovulation.” says Andy.
My PCOS has prompted a lot of grown up conversations between myself and my partner. Whilst we had spoken about the possibility of children in the future, it was always a long way down the line. As a result of my diagnosis and the harsh reality that it may take years for us to conceive naturally, we have together, had to make a decision on exactly when to start trying.
Overall, the important thing to note is that you are not alone in your PCOS struggles. PCOS is a condition that affects a lot of women, including myself!
Many celebrities have also spoken out about their PCOS struggles which include the likes of Victoria Beckham, Emma Thompson, Jools Oliver, Lea Michelle and Maci Bookout – who in fact went on to become an advocate and helped to make September PCOS awareness month.
If you’d like to know more about PCOS or feel as though you may be suffering yourself. Be sure to visit the NHS website and speak directly to your GP.