My experience with PCOS

On the 4th of June this year I was diagnosed with PCOS (Polycystic ovary syndrome) and to be honest it came as quite a surprise. I have struggled with irregular and painful periods my whole life, pain which was especially worse on the first day and more often than not led to me throwing up every month.

When I noticed my periods were irregular, I visited the GP and was put on the combined contraceptive pill which I was on for about three or four years, but stopped for a break when we went into covid lockdown in 2020. I restarted using the pill in 2022 for just over a year but then ended up stopping again a few months into 2024 as I’m not great at remembering to take it each day and wanted to consider something more long-term.

At the beginning of May 2024, I went to the GP again and asked about changing my contraception methods and explaining my monthly period symptoms. My GP was a bit concerned about my irregular periods and she said it could be down to multiple reasons, she suggested the next steps were to take a blood test and have an ultrasound to rule out anything such as PCOS. After I’d spoken to the doctors, I remember looking up PCOS as it was a term I’d heard of, but I actually didn’t know that much about it and what any of the symptoms were. When looking on the NHS site at some of the symptoms, I felt like a couple of them were true but not all of them, so I was unsure as to whether or not PCOS was the answer.

I was quite lucky to be able to have a blood test the next week and an ultrasound a couple of weeks later, I know for others, the wait can be much longer.  Once my results were in, I spoke to the GP, and he told me “your blood tests have come back negative for PCOS, but your ultrasound says the opposite”, he continued to tell me that the ultrasound showed cysts on both my left and right ovaries and when I asked how many cysts I had, he replied “too many to count”. 

I remember being extremely panicked and just replied ‘what?!’ and he explained that even though the blood tests were negative, we should “call a spade a spade and just say you have PCOS”.  I asked about what this meant for me, and he said that to combat the irregular periods, I should go onto contraception again and after suggesting the different options I decided to try the contraceptive patch. He said it was quite rare to be given the patch these days, but you only need to change it once a week and stick on like a plaster and you’re good to go.  

In terms of the PCOS he said that there isn’t a cure, but there are treatments and lifestyle choices that can help manage the symptoms and maybe reduce my cysts. He said he could recommend a weight management specialist that I could speak to if I was concerned about weight loss, but that was about it.

After the call, I just sat on the end of my bed thinking about what this really meant for me and my future. I’d consumed a lot of information about PCOS from the moment the other GP mentioned it, however it all kind of escaped my brain in that one moment when receiving my diagnosis, apart from the fact that you’re more likely to struggle with fertility. Now, I’m currently single and don’t plan on having children just yet but knowing that when the time comes that I do want to start a family, that it could be more difficult to conceive, is something that I’m still not too sure how to feel about. I know it doesn’t mean that having kids is impossible for me, but it’s a huge consideration. I remember jumping straight to Google and looking up how expensive IVF was and how much it costs to freeze your eggs…I think I was getting ahead of myself just a little bit!  

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Since my diagnosis I have researched the best ways of living with PCOS and looking at online forums of others who have been diagnosed and learning their stories. From what I have seen, I know that I’m very lucky to have been given a diagnosis so early as unfortunately for some women they have spent years trying to get an official PCOS diagnosis. I contacted my GP again to request a type 2 diabetes blood test to check if I have that as I’ve learnt that those with PCOS are more likely to develop it , and with it running in my family it was definitely something I wanted to check. Again, I was quite lucky to get a blood test fairly quickly and got told that my tests were negative.

My plan now is to make some lifestyle changes, which is easier said than done, and try and lose some weight to hopefully give myself the best chance of shrinking or erasing the cysts that I have. I’ve never really been that into fitness and exercise, especially in recent years, I tried during lockdown but quit embarrassingly soon! I’m lucky that I’m surrounded by multiple people who are opposite to me and are very much into fitness and have inspired me to be more proactive and start taking my health a bit more seriously, because at the end of the day my health and my future is down to nobody but myself. People can’t lose the weight for me!

If you’ve read the blog up to this point, thank you. If you have PCOS I hope you understand that you’re not the only person going through it, in fact it’s thought that roughly 1 in 10  women in the UK have PCOS. If you don’t have PCOS, I hope you know a bit more about it now and have learnt that not all periods are equal. If you’d like to know more about PCOS or you think you may have it, then I recommend you speak to your GP.

Love,

Emily x

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