PCOS: The Diagnosis that Explains a LOT

selfie in mirror

The past few weeks have been so busy (I’ve been decorating my room at home which was so fun), but it’s meant that I haven’t had any time to blog. However, now I’m back at Uni I’m going to be getting back into it and hopefully posting weekly again!

This week, I wanted to talk about something that is pretty new in my life, and something I’ve been tying to figure out and get my head round for the past almost two months; my journey towards being diagnosed with Polycystic Ovarian Syndrome.

Firstly, a little bit of an overview of what PCOS is. The cause is pretty much unknown, however it has something to do with abnormal hormone levels and affects how the ovaries work. It is also incredibly common – there are a lot of figures floating about (mainly because around half of those with the condition are undiagnosed), but it is thought to affect something like 7-20% of women.

PCOS can cause a variety of symptoms, but the main overarching issue related to the condition is infertility. Because one of the main symptoms of PCOS is anovulation (not ovulating), 70-80% of women with PCOS are infertile, and seeking help for fertility problems is in fact how a lot of women with PCOS find out that they have the condition. However, it is important to stress that this infertility is treatable, and most of these women are able to go on and have children if they want to, once their PCOS is managed.

The main symptoms of the condition include:

  • Irregular periods or an unusually long menstrual cycle
  • Weight gain or difficulty losing weight
  • Hirsutism, or excessive hair growth (often in places like the face and stomach)
  • Acne
  • Hair loss from the head
  • Infertility (however this can be managed/treated)
  • Depression or anxiety

Personally, I started noticing these symptoms years ago, but never really pieced them all together until recently. The first thing I noticed was irregular periods, however when you’re young you do kind of brush this off as your body ‘settling down’. But here we are 10 years later and it still hasn’t decided what’s happening! It varies for everyone, but my cycles as a rule last anything from 40-70 days (they should be around 28), but I occasionally do go up to 6 months without having a period at all.

From a young age I also started to develop really thick body hair that was super hard to manage. I can literally shave and within 24 hours it will already be really noticeable again. The worst aspect of this for me is that it is quite prominent and hard to manage on my face, and the constant shaving/plucking etc wreaks havoc on my acne, forming a vicious cycle! It’s definitely something I find embarrassing, but I wanted to mention it at least briefly as I don’t think body hair is something we should be ashamed of! It is also the thing that first made me question whether I may have PCOS, as aside from my cycle issues, it is definitely my most prominent symptom.

Of course, another huge part of my life has been my struggles with my mental health for which I have been taking medication for 6 years, and it’s strange to look back now and think that there may have been an underlying biological reason for it all along.

Weight loss is also something I struggle with, and this is probably the most frustrating aspect for me. It feels as though it is so stubborn to come off, yet I will gain weight just from sniffing fast food! This is something I really struggle with, especially as someone who is super into the gym and fitness. It’s hard to feel like my goals are such a battle (or even impossible) to reach, and I’ve kind of got into a bit of a vicious cycle where I find it very hard to try and lose weight because of my belief that ‘it’s not going to work anyway.’

In relation to this, I also have a real issue with carb cravings, and when I do eat carbs I never feel full. It’s almost as though the more carbs I eat, the more I crave them and want more and more. On researching and listening to a few podcasts since being diagnosed I have realised that this is very common and related to insulin resistance, which is often a feature of PCOS.

It wasn’t until this summer, though, that I finally started putting everything together after developing really stubborn, angry acne on my chin. I went to my GP and explained all the symptoms I was having, and he arranged for me to have tests to try and figure out what was going on. Blood tests and ultrasound tests can both highlight features of PCOS and eliminate other possible causes of the symptoms.

To be diagnosed with PCOS you have to have 2 of these 3 features:

  1. Anovulation (or lack of ovulation) which is characterised by having very long or irregular menstrual cycles.
  2. Clinical signs of hyperandrogenism (e.g. excess body hair, acne, weight issues) or blood tests indicating this.
  3. Polycystic ovaries which show up on an ultrasound.

The interesting thing with this is that you actually don’t have to have polycystic ovaries to have this condition, and in fact only about 20% of people who do have PCOS have this.

So having these tests was kind of where the confusion all started. I first had blood tests, which came back as pretty ‘normal’, and then my ultrasound also didn’t show anything massively out of the ordinary. However, when I went back to my Doctor, he said that because these tests eliminated other causes, that my symptoms were probably caused by PCOS and suggested I went to a specialist to investigate a bit more. At this point I was just about to move back to Uni, so he advised me to go to my Doctor there and get them to refer me to a gynaecologist or an endocrinologist.

This is where I had a little bump in the road. I went to my GP when I moved back, thinking it would be a pretty straight-forward appointment, and oh boy was I wrong! I don’t want to go into it too much, but the doctor was completely dismissive and patronising of me, and I basically left the appointment in floods of tears feeling very stupid. I knew completely that she was using the wrong diagnostic guidelines but it’s very difficult to say that to a Doctor, never mind when you’re upset.

So at this point, I was really in a bit of a dilemma, and it was pretty stressful having one person saying “you have this” and one person saying “you definitely don’t have this”. However, I had got this far and didn’t want to give up, so ended up registering back with my Doctor’s at home and getting referred that way. I wasn’t sure what the outcome was going to be at this point – I just wanted a definite answer.

So, almost two months ago I had my hospital appointment, and everything I already knew in my heart was confirmed. I was lucky enough to see a really lovely gynaecologist (which I needed after my last experience), and she explained within 10 minutes that because I have very irregular periods and multiple signs of hyperandrogenism, she could diagnose me with PCOS. She also spotted something in my blood tests related to the hormones that control ovulation, so that kind of confirmed things a bit more.

Although it isn’t great that I do have PCOS, it feels like a huge weight off my shoulders to actually have the diagnosis I knew in my heart was right all along, because knowing what it is means I can look into addressing it. Although there isn’t a cure for PCOS, it can be managed really effectively through lifestyle choices or certain medications (although I’m not going down that route for the moment).

The first thing I need to get my head around is weight loss, as this is the number one recommended treatment for PCOS. It’s just very unfortunate that the condition itself actually makes it very difficult to lose weight!

On doing a bit of research, I have learnt that a low GI diet and cutting down on gluten and dairy can be really beneficial to manage the insulin resistance associated with PCOS. With my diagnosis, I feel more empowered to educate myself, try things out and figure out the best way forward to improve my health and symptoms.

My plan of action is to start by swapping out things like pasta for gluten free versions, reduce my dairy consumption and stick to a mainly low-GI diet. The dairy aspect shouldn’t be too difficult as I already don’t eat too much of that and use plant-based milks. In my first month or so of trying to give this a go, I’ve already realised how hugely less hungry I am feeling. It feels weird to actually feel full, as I got so used to being ravenously hungry 24/7!

Another thing that is recommended for PCOS is weight training, which is really great for me as this is something I already do and love! Weight training is more effective for PCOS as cardio can cause spikes in the stress hormones which contribute to insulin resistance. This is great news for me as it is no secret that I hate cardio!

Overall, I’m feeling pretty positive about the whole thing right now, and a lot better for having some answers that allow me to make sense of it all a bit more. Weirdly, there’s a sense of relief in finding out I DO have PCOS, because it allows me to form a targeted plan of action rather than having no idea what to do to help my symptoms.

Will definitely be dedicating more blog/social posts to this in the future, as documenting my journey with things really helps me to keep focused on my goals! Also, if anyone out there reads this and thinks ‘wait, I have those symptoms’, make sure to go to your GP (and make sure they listen!) PCOS is a very common condition and with the right treatment or education it can be significantly improved.

For more information, you can read the NHS website’s page on PCOS here.

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