When I was 16, I started noticing changes in my body. I was slowly but steadily gaining weight, my acne flared up, the hairs on my body grew thicker and longer and my never-ending periods turned to barely-there bloodstains that only appeared every 2 months.

I think that, at the time, I blamed it on puberty. Even though that began when I was 11, I guess I assumed it was normal for your body to still be changing 5 years later. Maybe it is. But this wasn’t puberty.

It’s still a sore subject and one I’m trying to find confidence to share unabashedly. The road to awareness began after a holiday, when my sister pulled my mum aside and asked her to have a chat with me. She had noticed things about me and my body that she felt our mother was more equipped to mention than she was. I don’t reckon it would have mattered much, who had told me. I was embarrassed all the same. Horrified that people either had, or could have, noticed things that I wouldn’t. Embarrassment quickly turned to worry, though.

Mum hadn’t just pulled me aside and told me of my sisters concerns. She had googled these abnormalities in the hopes of finding solutions that she could share with me. I guess to soften the conversation? But while she did find solutions, she also found a lot of articles mentioning a thing called Polycystic Ovaries Syndrome. PCOS.

As she read the symptoms, she could check off almost every single thing listed, as something she had observed about me. One of them made her stop when reading it and made me stop when hearing it. Ovarian cysts are a symptom of PCOS and even though the cysts aren’t cancerous, we both wanted to get it checked out at my doctor’s office. She transferred us to a major hospital and that’s when diagnosis-hell started.

It took a long time for them to diagnose me with PCOS, months that included missed high school classes, countless of blood tests and, finally, a hospital gynaecologist who did what everybody else either couldn’t or wouldn’t. She diagnosed me with PCOS. After a few more blood tests and a visit to a dietitian, I was off on my own, with nothing more that the hospital could do for me.

When I hear other people talk about PCOS and how they were diagnosed, the stories are almost identical. Patients who go through a longwinded ordeal before getting the diagnosis. Patients who are told to go on birth control and lose weight to lessen symptoms, and then instructed to come back when they want children. Patients who are left to fend for themselves, to try and make sense of their bodies and their health, all by themselves, because nobody in the healthcare system, regardless of country, knows very much about this syndrome.

Polycystic Ovaries Syndrome, or PCOS, is a condition in which the ovaries produce “an abnormal amount of androgens, male sex hormones that are usually present in women in small amounts.” There are 3 main features of PCOS and women need to meet 2 of those criteria in order to be diagnosed. The 3 features are irregular periods, where the ovaries fail to regularly release eggs; excessive androgen, which may cause physical signs such as obesity, acne or excess facial or body hair; and polycystic ovaries, fluid-filled cysts that surrounds the eggs. As you only need 2 of these symptoms, this means that you do not need to have ovarian cysts in order to be diagnosed with PCOS. The exact cause of the condition is still unclear, although PCOS is linked to insulin resistance, with many who suffer from the condition having reportedly high levels of insulin, which often cause higher levels of androgen. PCOS is not a rare condition; it is said to be affecting 1 in every 10 women in the UK, and more than half of the women affected do not have any symptoms and therefore often suffer from late diagnosis, usually after failed attempts at getting pregnant.

When I was diagnosed in September of 2013, I didn’t know anybody who had PCOS. Slowly, over the years, I noticed more and more instances of wondering to myself if a certain friend had it too, only to find out later that they had gotten diagnosed. Now, I have several friends who have talked about it, and more and more celebrities are opening up about suffering from PCOS. I’ve found many Instagram accounts dedicated to teaching women about the condition, helping them with weight loss, fitness routines, diets and ways in which to get pregnant. You can get personal trainers and coaches who are specialised in PCOS, women who have devoted their lives to bettering other peoples, because they realised that information is limited. Not a whole lot of people know a whole lot about this condition, what causes it and exactly what can make it better. Since there’s no cure, it’s hard to feel like things will ever really get normal. Which is why it’s still a sore subject.

It's taken me nearly 10 years to figure out what works for me. Fast-paced cardio raises my cortisol levels, which makes me gain weight, so instead I’ve resorted to slow and weighted workouts and loads of walks. Inositol and daily vitamins are vital for me to take in order to function, both in regards to my periods and my energy levels throughout the day. And I’ve only just realised this year that my stomach has a ridiculously hard time processing gluten, which is why I’m mostly gluten-free now. It also has a less-but-still-hard time processing carbs, so I try to eat less of that as well.

I try not to think about getting pregnant. I’m still single, so it’s not something I have to think of, but the doctors at the hospital told me, back when I was 18, that I needed to start trying early, because it could take me years. I don’t know if it’s possible for me to have kids or if it’ll take me a decade. But again – I’m trying not to think of it.

A lot of people don’t know a lot about PCOS. And I’m not even talking about healthcare workers or the people who suffer from it. Normal people don’t know a lot about it, not before they’re confronted by a diagnosis and forced to seek out whatever information they can find on the internet. We don’t talk about it because we don’t know what it is. Women are being forced to deal with a condition that they will get the rest of their lives to figure out what is and how to deal with it, because each case seems to respond differently to every lifestyle. It’s hard to maintain and it’s hard to rejoice the victories, because sometimes they don’t last very long.

It's scientifically proven that women with PCOS have a harder time losing weight, because of the insulin resistance. When your cells become resistant to insulin signals, your pancreas starts to overproduce it, which means your body goes into fat-storing mode and the insulin begin to act as an appetite-stimulating hormone that promotes the feeling of hunger.

To put it in plain English, your body thinks you’re a cavewoman that needs to store consumed fat, because food supplies are unreliable, and your hormones gives you cravings and makes you feel hungry, even when you’ve just eaten. It makes it difficult to lose weight, to say the least. It also makes it difficult to feel like you’re making any progress, even if you are running several miles every day and eating like a rabbit. In the last 10 years, I’ve had countless of comments made about my lack of trying, even from friends and family members. It hurts immensely, knowing how much I have tried and how many times I’ve fallen back into horrible eating habits, simply because I gave up after no significant progress.

It's taken me 10 years to get to a point where I feel like I now know the path. It’s taken me 10 years to find a map and now the next step is to properly decode it. That’s where I’m at now. Figuring out what works and what doesn’t. I’ve spoken a lot to friends and the women in my family about it, but I can still only recount what I’m figuring out for myself. Every time I get advice about what’s working for one of my PCOS-suffering friends, I know that there’s a chance that won’t work for me. It’s not so much a horrible thing, once you realise that treatments work differently, as it just is annoying. But it does mean that you are a little bit on your own, in your road to progress. It means that even though I’m getting more and more advice, from more and more people, it’s still an awfully personal journey. PCOS might be getting more visible, but I’m still finding it incredibly lonely.

References

nhs.uk. “Polycystic Ovary Syndrome,” n.d.
Johns Hopkins Medicine. “Polycystic Ovary Syndrome (PCOS),” February 28, 2022.
Verywell Health. “Why It’s So Hard to Lose Weight With PCOS,” October 20, 2022.