My PCOS Experience

Today’s post is quite a personal one, so I’d appreciate it if people were considerate of that in the comments! I’d also like to request that nobody leaves unsolicited advice for me in the comments section, though if you are someone who also has PCOS I would be interested in hearing your own personal ways of managing it. This post is going to be broken down into three stages: my diagnosis and the process of that, my initial reactions, and then finally the changes I’ve made since going vegetarian to make sure my diet is a bit more PCOS friendly. I want to make this very clear: I am not a doctor, and I am not an expert, or qualified in any sense. This post is just me sharing the research I’ve done and the steps I have taken. I’m not perfect, and although I’ve done my best to make sure what I say is accurate, there may be some inaccuracies. Please do more research, and speak to a medical professional if you suspect you might have PCOS, or before you make any lifestyle changes. I will link some sites I have used at the bottom for reference.

But before we get into that, I’d like to provide a bit of background for anyone who isn’t aware of what PCOS is. PCOS stands for polycystic ovary syndrome. The name is slightly misleading, as people with PCOS have fluid-filled sacs (which are different from cysts!) in their ovaries, surrounding the eggs. According to the NHS website, which I will link here, up to 1 in 10 ovary-havers in the UK have PCOS, but the rate of diagnosis is a lot lower, as PCOS symptoms range from mild to severe, and people at the milder end of the spectrum may never realise! Obviously you can’t just have a quick peek at your ovaries, so I thought I’d quickly cover some of the external symptoms that might help people to move towards a diagnosis. Common symptoms you may notice include: irregular periods, heavy or painful periods, excess facial or body hair (caused by raised levels of testosterone and other ‘male’ hormones in the body), and difficulty losing weight. PCOS can also cause fertility issues, so if you suspect you may have it, it’s best to get it diagnosed as then you can not only manage your symptoms, but also receive fertility advice if you are hoping to conceive.

Hopefully that’s provided you with a bit of an overview of PCOS, and the NHS website I linked above has a lot more information as well.

My Diagnosis
I went to see my GP just after I turned 18 because I suspected I might have PCOS. My menstrual cycle was irregular in the respect that it was longer than you would expect, but I did get periods at regular intervals, and I had some other mild symptoms as well. My GP, fortunately, was really supportive, and after a conversation with him he said he was happy to send me for the required tests to get a diagnosis so we could talk about how to move forwards. I can’t remember exactly how much he explained about it at this point, but I think I was aware either from my own research or from this conversation that the combined contraceptive pill is the most common method used to manage PCOS in the UK.

A PCOS diagnosis requires two of the following: irregular periods, high levels of androgen, and the fluid-filled sacs in the ovaries. I had already noted the first symptom, but I needed to have further tests to make sure my external symptoms were caused by PCOS and not another underlying issue. Much to my disappointment, my GP told me I would have to have a blood test to check my hormone levels (I hate needles, and had hoped to go straight to having an ultrasound).

My blood test was, in the end, pretty uneventful. It was the first one I’ve ever had so I was nervous, but the phlebotomist was really nice. I refused to look at the needle during the entire procedure, but apparently she took two little vials of blood, and it was all over in maybe 30 seconds. The blood samples had to be sent off, so I had to book another appointment with my GP to discuss my results.

To my eternal frustration, my blood test results came back inconclusive. The levels they were looking at for a PCOS diagnosis were within the normal ranges, so my GP couldn’t conclusively say from my blood test that I had PCOS. At this point, I was referred to the local hospital to have an ultrasound scan.

As anyone who has a lot of experience with the NHS knows, hospital appointments aren’t the quickest thing in the world, and I think I got an appointment about a month or so after the GP referred me. Before you have an ultrasound, you have to drink a LOT of water, and you can’t have a wee, so my bladder was pretty much bursting for the whole appointment. I had a bit of a weird experience with the ultrasound gel: everyone says it’s cold and it was at first, but while the nurse was using the scanner on my belly, the gel actually started to get quite warm. Weird, right?

The nurses weren’t able to tell me anything at my scan, but they told me that the images would be sent back to my GP, and I should make a further appointment with him to discuss the scan. As you can probably guess, when I went to see my GP, he confirmed that the scan showed that I do have polycystic ovaries, and from there I was prescribed the combined contraceptive pill in order to manage and minimise symptoms. I was lucky enough to get on well with the first pill I was prescribed and, four years later, I’m still taking the same medication.

Adapting
I’ve called this the adapting section but to be honest, I did very little adapting of my diet/lifestyle when I was first diagnosed. I felt like my mum was pushing me too hard to try to cover up my PCOS symptoms, which made me feel ashamed of having PCOS in the first place and I responded to that by refusing to acknowledge any of the symptoms, or adjust my lifestyle to a more PCOS-friendly lifestyle. I continued to eat the same as I always had, and didn’t add in any exercise into my daily routine. I didn’t tell many people about my PCOS and to this day, I’ve not told my dad. Nobody is entitled to know your medical record (though of course when you’re a child your parents will have the right to know), so I chose not to tell him because I didn’t think it was something he really needed to know. Plus there’s the added awkwardness of talking about your ovaries with your dad.

At this point what I probably should have done was adjusted my diet to include less carbohydrates (refined carbs like white bread are high in sugar and are widely considered bad for PCOS) and more protein, and tried to do a bit more exercise. I didn’t eat especially unhealthily, but I had cereal every morning, and a cheese sandwich every lunchtime. While that’s a pretty normal, respectable diet for many people, because PCOS can (it’s estimated in about 70% of cases, and I do not know if I’m in that 70%) affect the way your body processes insulin, eating a carb-heavy diet can quite easily lead to weight gain. Exercising is important for people with PCOS because obviously it can help to prevent weight gain, and PCOS symptoms can actually become more severe if you are overweight or obese, and if you’re in the percentage of people with PCOS who have issues processing insulin, it will increase your risk of diabetes.

Now!
It’s been four years since I was diagnosed with PCOS, and in the last two years I have been making more positive steps towards changing my lifestyle to help with my PCOS. However, about two and a half years ago I started the process of becoming vegetarian (more on that here), and to be honest, that’s made the later changes I’ve tried to make a lot trickier because so many vegetarian forms of protein are also high in carbohydrates! I am definitely now finding it way more manageable, though, and I’ve learnt how to incorporate more protein into my diet while still eating all my favourite foods. One of the first changes I made was a super easy one: I swapped my breakfast from cereal to Greek yoghurt, which is really high in protein, low in carbs, and gives me a good start to the day. I switch up what toppings I add, but it’s usually some kind of berry or soft fruit, or maple syrup. I’ve also tried to move away from relying on sandwiches for lunch, and I started eating a lot of eggs, cheese, Quorn cocktail sausages, and normal vegetarian sausages. I also started going to AquaFit classes with some of my University housemates, and I was doing a lot of walking around Exeter while I was at University, so I was also getting a bit more exercise than I used to.

In the last year I’ve also made several more changes to my lifestyle. I spent a few months regularly swimming (obviously COVID has put a stop to that…), and I’ve learnt more and more high protein vegetarian recipes that I really enjoy making. A few months ago, I started running (find out more about THAT here!), and since then I’ve been exercising regularly. Right now, I’m not running because work really limits when I can run, and the weather is… awful. Instead, I’m following at-home, low-to-no equipment strength workout plans to keep active. I’m still eating my Greek yoghurt for breakfast, and I usually have either a salad with some veggie meat-replacement protein for lunch, or something like soup (I started adding veggie meatballs to tomato soup!) to make sure I’m getting plenty of protein in early in the day. Then I have whatever I fancy for dinner, which is where most of my carbs for the day comes from. I’ve found that this gives me enough balance of eating foods I like (and not cutting anything out entirely!) while making sure my diet is better for my body. I do still have a way to go (I’m working on my snacking habits!), but I’m really proud of how much I’ve done in the last few months, especially exercise-wise to help my body become healthier.

If anyone reading this post has PCOS and wants to reach out, you can find my Twitter here (DMs are open!), and I’d love to start a conversation in the comments if there’s anything of your experience you’d like to share.

Reference sites:
NHS UK Polycystic Ovary Syndrome
South Warwickshire NHS Trust Leaflet on PCOS
Healthline PCOS Diet Information
Nutritionist Resource PCOS

Support sites:
Verity PCOS UK
PCOS Folks Subreddit

9 thoughts on “My PCOS Experience

  1. Yessss, it’s always so good to see someone be so open about PCOS! I was diagnosed in July after a few years of unexplained issues. Thank you for posting so openly and honestly – it’s such an important issue that really doesn’t get a platform ❤

    Liked by 1 person

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