This post stems from an interview experience I had recently where I offended someone in true “Piers Morgan interviewing Caitlin Jenner” style of ignorance, by assuming the woman I was speaking to had “weight issues” when referring to her PCOS (Polycystic Ovary Syndrome). Her reply left me mortified, and rightly so, as she explained how sensitive an issue this was for her and – in politer language – described me as a right bell end for jumping to conclusions on a topic that I knew very little about, given I don’t have PCOS. She was right.
So I apologised, and set off to do my own research. I’d always thought that you if you had PCOS this meant you were fat with a sparse beard, given what my friends had told me at school. Was this true? Does PCOS cause weight gain? Or is this just a myth? Wait…what even IS PCOS? I turned to the best woman for the job to teach me the science behind PCOS, and answer all of my naive, burning questions: Dr Anita Mitra, who is an NHS doctor based in London working in Obstetrics & Gynaecology, with experience in both clinical medicine and research.
Firstly, what is PCOS?
“PCOS is a metabolic and hormonal disorder syndrome that affects up to 1 in 10 women. Diagnosis is based on presence of at least out of the following 1) irregular periods or infrequent periods (ie. a cycle, that is the time one the start of one period to the next, that falls outside the average 25-35 day pattern) 2) excess androgens characterised by excess face and body hair, acne or male-pattern baldness 3) presence of multiple cysts on the ovaries on an ultrasound scan. It’s important to note that simply the presence of these cysts in the absence of the other two symptoms does not denote PCOS.”
What are the symptoms?
“As above. Importantly, women with PCOS have a higher change of getting type 2 diabetes and heart disease later in life as a result of the associated metabolic changes. It is also associated with fertility problems due to the lack of ovulation, and this is probably the biggest concern for patients that I see in clinic. Having PCOS does not automatically equal infertility, as many patients have PCOS without even realising it and get pregnant with no problems whatsoever, but it can be a very big factor for some women.”
Who gets PCOS?
“Anyone can have PCOS. Family history is the biggest risk factor. It’s estimated that 50-80% of people with PCOS are obese. It tends to be diagnosed in the 20’s and 30’s. It’s not particularly associated with a particular race, but it’s been suggested that the symptoms tend to vary slightly according to race, probably due to variations in the genetic predispositions between different races.”
Does PCOS make you gain weight?
“It’s difficult to tell whether PCOS causes weight gain, or weight gain causes PCOS. It’s probably a combination of the two, combined with the genetic factors mentioned above. Between 50-70% of women with PCOS have insulin resistance, again this is probably a combination of cause and effect although having excess fat tissue with worsen insulin resistance. Insulin resistance can cause carbohydrate cravings, putting weight on around your stomach, and also difficulty in loosing weight, so it’s all a vicious circle.
PCOS has also been associated with abnormal levels of grehlin; the ‘hunger hormone’, which can cause loss of satiety cues and overeating resulting in weight gain.”
Is there any treatment for PCOS?
“Many people are put on the pill as a way of ensuring a regular monthly bleed to protect the endometrium (lining of the womb), but it definitely doesn’t ‘balance your hormones’ like many people believe. Whilst I don’t have a problem with the pill for women with PCOS, it’s not going to get to the root of the problem.
The same goes for other medications such as metformin which can be used the increase weight loss and increase the chance of ovulation, and spironolactone for excess hair and acne. Whilst they can be very effective in treating the symptoms, the symptoms generally reoccur when the medication is stopped, unless you’ve undertaken some serious lifestyle changes during the time you’ve been taking the medication. Myoinositol is another medication that is emerging as an effective treatment of PCOS improving chances of ovulation, decreasing androgen levels and improving insulin sensitivity with fewer side effects.
Lifestyle modification is the first-line treatment for PCOS in the guidelines from the Royal College of Obstetricians and Gynaecologists. These include:
– decreasing stress
– improving sleep hygiene and quality (I personally did this by following the sleep schedule on my iPhone and using a meditation app before bed, because I’m usually too wired to sleep most evenings)
– looking at your exercise regime (if you’re not exercising, it’s time to start – initially I recommend anything that you enjoy and are going to stick to. If you are exercising are you overdoing it? I frequently see women doing 5-6 HIIT sessions per week which is just too much stress for the body, so I would advise mixing it up, and even consider decreasing the frequency and going for fewer, better quality sessions, and mixing it in with some relaxing activities, such as a good walk, yoga, pilates etc)\
– changing your diet.
It’s difficult to determine whether you can truly get rid of PCOS once and for all, but with lifestyle modification you can certainly have a good go and improving the hormonal and metabolic abnormalities which will have a long-term, positive impact on health outcomes beyond that of reproductive health.”
How will adjusting your diet help with PCOS?
“Making sure you diet is up to scratch can help with the symptoms that result from excess oestrogen, decrease excess androgens, improve insulin resistance, and also decrease your risk of having diabetes and heart disease later in life.
I really believe the dietary advice we should give women is based on what they can add to try and improve their diet and their symptoms, rather than just the unhelpful blanket advice that they need to loose weight. There have been some recent suggestions that PCOS is associated with binge-eating and bulimia. Whilst 5-10% weight loss is associated with a greater chance of re-establishing a regular menstrual cycle, ovulation and a successful pregnancy, I don’t think it’s necessarily that helpful for that to be the focus. By making some of the dietary changes described below many people will loose weight as a consequence, but for a lot of people it’s probably quite unhelpful to make this the focus. It’s also important to note that not everyone with PCOS is actually overweight, but being of a normal weight doesn’t mean your diet is perfect. So I think pretty much everyone, could make some positive changes to try and enhance their diet, to try and improve the hormonal and metabolic abnormalities which underlie the disease and cause long-term health problems such as heart disease.
These are my top tips:
1. Good quality lean protein and complex carbohydrates to maintain a stable blood glucose
2. Ensure you’re having plenty of fibre which is a way of helping the body get rid of excess oestrogens in your stool, and maintaining a healthy gut microbiome, which is essential for hormone production and homeostasis.
3. Healthy fats e.g. oily fish, nuts, seeds, avocados – because your female hormones are made of cholesterol, and if you aren’t feeding your body the building blocks, it won’t be able to make the goods.
4. Eat a rainbow diet – naturally colourful foods contain phytonutrients, antioxidants and other vitamins and minerals that are required for the complicated process of hormone production and ovulation. In my opinion it’s one of the most fun, non-diet suggestions to improve the quality of your diet (and something that Rupy and I talked about in his new podcast that came out last week).
5. Lots of green veg – for fibre, but also because some of the phytonutrients they contain such as indole-3-carbinol have been shown to help the liver metabolise excess oestrogen.”
The emphasis on weight gain, the suggestion that PCOS is associated with binge-eating and bulimia, and diet changes got me thinking, how do you cope with managing your PCOS when you have an eating disorder? Tori Thurnher tells me that since being diagnosed not long after her thirteenth birthday, her doctor did not give her any real advice for managing her PCOS. “Not a single person (Doctor or otherwise) told me that weight gain was a symptom of PCOS. I actually did not know that until years later while watching a medical TV show! I never gained what would be considered “excessive” weight, but I did gain. No matter how active I was I couldn’t manage to take weight off. I began suffering from bulimia a year before I was diagnosed with PCOS, because my doctor did not tell me that weight gain was a symptom of PCOS I did not correlate the two. I thought the weight gain was my fault completely and while I can’t say for sure, I think if I’d been told the full list of symptoms from the start that I may have been more likely to reach out for help with ED and how to live a healthy life not blaming myself for the weight gain.”
Lindsey Hall says that the first doctor that ever told her she had PCOS was callous about relaying the information to her. “I was told I’d be infertile without help, and that most women who suffer with PCOS are overweight and have insulin resistance and can have thyroid issues and diabetes and ovarian cancer, along with a few other things she lazily mentioned on the phone call. It was overwhelming.
“Once I sat down with a specialist, I was told to maintain a diet that cut out refined carbohydrates, such as starchy and sugary foods like white bread, muffins, pastries, desserts, white potatoes, anything with white flour. I was advised that high-fiber foods can help combat insulin resistance and that lean protein like tofu, chicken and fish were better options. And obviously greens, fruits etc. In turn, I cut out everything I considered “bad” and fed into the belief that I couldn’t eat anything.
“I absolutely allowed it to affect my eating disorder in a negative direction, yes. Frankly, I had already been struggling with ED for years. This was sort of the ‘final blow’ so to speak. I chose to manifest the fear of gaining weight with PCOS into a more obsessive regime, which included excessive running and diet changes. (I was one of those #vegans. I just didn’t want to eat so I claimed to be raw vegan, when really I just looked for excuses not to eat.)”
I ask Anita, is there any help out there for women who have both PCOS and an eating disorder?
“A very good question and unfortunately I don’t actually know of anything specific. I think it would require a specialist multidisciplinary team including gynaecologists, psychiatrist/psychologist specialising in ED and dieticians.
There seems to be quite a lot of people advocating intermittent fasting as a treatment for improving insulin sensitivity, which in turn may help PCOS symptoms. There are so many ways in which you can intermittently fast (e.g. 5:2 diets, 16 hour fasting etc), and there isn’t one clear way that has been shown to be best, and in fact, the evidence base is still largely anecdotal. I personally am a bit reluctant to advise IF (intermittent fasting) for my patients, based on this lack of evidence and my personal experience. I personally have had, and at times still have, a poor relationship with food and have a tendency to get quite obsessed if I’m partaking in a very strict form of diet. I’ve tried intermittent fasting (although not for any kind of PCOS/insulin sensitivity reason) and found that it took away my love and enjoyment of food, caused me to binge, and whilst I ultimately ate fewer calories, I don’t think my diet was as nutrient-rich as when I just eat normally seven days a week. It can also be socially isolating and isn’t really sustainable, particularly if you’re exercising or have a busy job (I once nearly fainted whilst doing CPR on a patient in A&E because I was on a 500-calorie day of the 5:2 diet) I also think that there are a lot more people with disordered eating/poor relationships with food and I think intermittent fasting has the potential to worsen this.
For me, the best type of lifestyle change is the one that is sustainable, and doesn’t cause you to have to overthink. It should be something that fits alongside your every day life in a harmonious manner, isn’t a chore, and is enjoyable.”
