Trigger warning: This article contains themes of bulimia and binge-eating.
As someone who was diagnosed with “inconclusive PCOS (polycystic ovarian syndrome)” as a teenager, insulin and type 2 diabetes were never mentioned. PCOS is a condition that affects how the ovaries function, and type 2 diabetes causes too much sugar in the blood, usually affecting people over 45 years old. Michelle Swer, consultant gynaecologist at London Gynaecology, says that as PCOS is usually diagnosed in younger people, “the risk of type 2 diabetes at that age feels unlikely”. This might be why I was simply put on the contraceptive pill to regulate my periods and told to come back if I wanted to get pregnant, without any advice on how to help prevent type 2 diabetes. I wish I had been empowered with information, as I now know over 50% of women with PCOS develop diabetes before the age of 40 in the US.
This is the story Dr Jan Toledano, a women’s hormone specialist and founder of London Hormone Clinic, has seen with patients time and time again when they’ve gone through free healthcare on the NHS. “I think lots of doctors do not understand PCOS very well, which then means that women who have it don’t understand it very well either,” says Dr Toledano. It’s a damning statement, but one that’s informed by her experience. “I’m not sure I’ve ever had a patient who has been properly told how to prevent getting type 2 diabetes at the point of being diagnosed with PCOS,” she adds. The sad thing is, in many cases, with the right information, the risk of becoming diabetic can be significantly reduced for women and people with uteruses.
Fast forward 11 years since my diagnosis, and it doesn’t seem like women’s health in this area has improved across the years when we look at patient care and support. One study suggests that while not all people with PCOS have issues with insulin (though around 65-70% do), all patients “should be treated” for it as standard. Let’s also keep in mind that in the UK, one in eight women have PCOS, making it very common, with three million women in the UK estimated to be affected. Like many health issues, the statistics are even bleaker for women of colour. Black women are disproportionately affected by PCOS, and Black adults are twice as likely in the US to develop type 2 diabetes than white people.
Dr Toledano believes that PCOS is the wrong term for this condition. She explains: “It’s very badly named. It’s called PCOS, which suggests it’s to do with the ovaries, but it is not. PCOS is caused by a predisposition to diabetes. It is one and the same thing. The underlying condition is an increased risk to insulin resistance, which in simple terms means a person doesn’t manage carbohydrates and sugars very well.”
Dr Toledano says a helpful analogy is to think of a petrol car that’s been filled with diesel – it can’t run on that fuel. The same happens in the body. “It doesn’t matter whether you’re eating fruit or a bagel, sugar and carbs of any kind for someone with insulin resistance put pressure on the pancreas,” she explains. “This causes insulin to rise, and then the body makes lots of oestrogen, which means you often have things like PMS, heavy periods, or sometimes you have zero periods. If you don’t ovulate “normally”, cysts form on the ovaries.”
Though young people don’t make up the usual profile for type 2 diabetes, they’re out there facing the consequences of limited medical support. Lizzie, 33, from Huddersfield – who doesn’t want to share her surname – “never expected” to find herself with type 2 diabetes in her early 30s. Lizzie was initially diagnosed with PCOS aged 17 after having heavy, painful periods and hirsutism (excessive hair growth). “I was put on a combined contraceptive pill and my GP told me to look at Verity, [a volunteer-run charity supporting those with PCOS], then sort of sent me on my way”, she says. Lizzie was left to research herself, not to mention needing to navigate the “devastation” she felt at being told aged 17 she may struggle to conceive in the future. “I’ve had to be my own advocate so that my health is looked after,” she adds. In September 2023, she was told she has diabetes. As there’s a history of it in her family – and genetics do play a role here, Dr Toledano says – Lizzie thought she might need to worry about the condition in her 40s or 50s, but certainly not as young as she is now.
“I feel there’s a disconnect between what happens at a GP level and what happens when you have diabetes – the NHS is set up to be reactive rather than proactive. If I’d been told 16 years ago at diagnosis, what difference could that have made, and how much would that have cost the NHS?” she asks, and it’s a good question. Now on Metformin, a medication used to treat people with pre-diabetes and type 2, and assigned a diabetic nurse, Lizzie has also changed her diet (which hasn’t been easy as she has coeliac disease).
Nutrition is another beast within the issue. A new study in the academic journal Reproductive Sciences found that disordered eating happens more frequently in women with PCOS, particularly bulimia and binge-eating. On TikTok, a London-based PCOS nutritionist called Alex Okell shared this study and her video has been watched by thousands. Okell puts this problem down in part to the lack of information PCOS patients get around their diet. If they’re living in a larger body – one of the symptoms that comes with PCOS is weight gain – she claims “when they go to their doctor, they just get told to lose weight”. This statement is problematic in itself, and is only worsened by the lack of awareness and education around insulin resistance.
This is something which June-Ann, 34, from London, who doesn’t want to share her surname, can relate to. Having felt dismissed by doctors as a woman in a larger body, any health issue she had was “put down to weight” while her PCOS was ignored. Despite having been diagnosed with PCOS at 17, and having a family history of diabetes, she wasn’t educated on insulin resistance either. After being handed a leaflet by her GP, she too was told to come back if she later wanted to get pregnant. Then, at 32, she got the news she had type 2 diabetes. “I wasn’t taken seriously by doctors – it was always about being bigger and PCOS didn’t even come into the conversation. I think it’s a thing of them not knowing the details properly.”
All the knowledge she has of the condition has come from doing her own research and now she even has a podcast about it. “I was scrolling on Instagram in 2020 and saw some posts about PCOS that said it creates all these issues that aren’t just about your ovaries, like affecting mental health and your skin, etc. It gave me a sense of peace, because I knew that I haven’t been losing my mind. There’s a reason why I feel the way I feel,” June-Ann says. A year or so later, she began getting pins and needles in her fingers – a sign of being prediabetic. Now, she’s on a strict nutritional plan to manage it, along with Metformin. A nutritionist calls her every fortnight on the NHS.
Shane, 33, Derbyshire, a trans man with PCOS, who doesn’t want to share his surname, is concerned about developing diabetes so makes considerable effort with his diet and exercise routine. When diagnosed with PCOS, he was lucky enough to have the “risk of diabetes” mentioned by his doctor, but “they didn’t really go into it”. “It was more, you have bad periods and we can see you’ve got a bit of facial hair, so that’s another indicator that you’ve got it. They focused on the physical stuff that you see rather than medically, this is what it can do to you,” he says. “I’ve got PCOS tailored cookbooks that have taught me more than a doctor ever has.” On top of this, it’s triggering to be “treated by doctors like a woman, when men have this issue too”.
There are tests that can be done to determine whether a person is insulin resistant, or at risk. Swer says these can often be “forgotten” about. “People with PCOS should get a reassessment every three years of their glycaemic status (a glucose tolerance test or blood test of fasting glucose can do this), so they can keep on top of any changes,” she advises. Dr Toledano says you can also use a blood test to measure LH/FSH flip, as well as SHGB (sex hormone binding globulin), as abnormal levels here can indicate insulin resistance.
The important thing to remember, is that Dr Toledano stresses this is all “completely reversible”, with the right medical course of action. No one should be in the dark about their own health, simply because things weren’t explained properly to them. Next time I go for a routine blood test, I’m going to ask for the recommended tests above so I can get a clearer sense of my own health.
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