Understanding PCOS

By Jazz

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Polycystic ovarian syndrome (PCOS) affects, on average, 1 in 10 people.

That’s an insanely high number when you think about it and yet, there isn’t a lot of awareness or support for people that have the illness. It’s extremely difficult to get a diagnosis (on average, about a year) and once you have the diagnosis, getting treatment is a whole other battle in itself. PCOS throws all kinds of challenges at everyday life; constant pain, excess body hair, problems with weight and infertility. That’s only the physical side of things too - studies have found that people who suffer from it are also more likely to be diagnosed with obsessive compulsive disorder, bipolar disorder, anxiety and depression. Having a brief understanding of it is quite literally the tip of the iceberg and as someone who was diagnosed with it a little under three years ago, I’m still learning about it everyday through my own research, but especially my own experiences.

Understanding the symptoms was the first step for me. Some of them seem very random, and completely unrelated to each other, but it’s important to be aware of them. Of course, these differ from person to person - some might show all of these, and some people might show none at all - but on a general level, these are the most common ones:

1. Painful periods. This can be intense cramps, headaches and extreme discomfort in other parts of the body. It’s hard to decipher exactly what doctors mean by “painful” but mine defined it as pain that affects everyday life and prevents you from partaking in usual activities like education, work and socialising. 
2. Irregular periods. Again, this is a vague term but generally, someone with a period would have it roughly every 27-35 days. Anything shorter or longer than that is considered irregular. For example, my own cycle can range from two periods within a 28 day window and then none at all for three or four months,
3. Excess body hair. This can be on the face, feet, hands, chest and back but again, this varies and can be anywhere. 
4. Struggles with weight. This can mean struggling to lose weight or easily gaining it. People with PCOS also tend to carry a lot of their weight in the abdomen/lower tummy area. 
5. Increased male hormones. 
6. Struggles with fertility. It might be that they struggle to get pregnant due to irregular cycles/hormones or struggle to stay pregnant. 

I first went to the doctors for irregular periods. I’d always had painful ones - missing a lot of school, uni and work because of them, and struggling to even move from bed some days - but I wrote this off as normal. That’s the one thing I suggest not doing. I cannot stress that it is literally not normal to have periods so painful that they incapacitate you. That’s something people don’t talk about enough! I learnt that the hard way, and the doctor was surprised that I’d waited so long to get help. My periods became more irregular when I was around 18, although they hadn’t been very reliable before that. I was a little confused about some of the questions they were asking me - especially regarding excess weight in my lower stomach and extra body hair. I just remember thinking how do they know?

Retrospectively, if I had just Googled all these things then I probably could have been diagnosed a few years earlier but maybe I can blame that on the lack of awareness. This was in early 2021, still at the height of the pandemic, so a lot of my appointments were video calls and over the phone. It was a strange process but I went through almost all the usual stages that someone would have done in “normal” times:

1. Blood tests. This is to check for certain types of hormones - people with PCOS will generally present higher levels of testosterone and androgens. These are generally considered biological male hormones and are what cause the excess body hair.
2. Other hormone tests. This is further insight into what your body is or isn’t producing and helps to narrow down potential causes for your symptoms. 
3. An ultrasound. This is to check for cysts in the ovaries and eliminate other possible causes of similar things such as endometriosis. 

I didn’t have an ultrasound in my case, because my blood/hormone tests and presence of physical symptoms were enough criteria for a diagnosis. On the whole, it took about 14 months for all this, though the estimate for diagnosis will have gone down since the pandemic is over. Because I’m so young, no major courses of treatment were recommended. In fact, they could not have given me more general advice: eat healthy, do exercise and drink less. Basically the three things that are recommended by every health magazine, doctor and lifestyle influencer ever. 

I learnt my own ways of coping over the last three years. I’m lucky that in my case, my symptoms are usually only really bad when I’m on my period but there is stuff I do 24/7 to alleviate them too. One of the best things I’ve done is go on the mini pill (A.K.A the progesterone only pill); this doesn’t necessarily change my periods, but it does regulate them. This means I can plan ahead for when I know my period is due and can at least be prepared for the pain. I also got prescription painkillers that are a little stronger than over the counter medicine; my doctor specifically gave me mefenamic acid and it’s been the only thing that’s done a little more than just taking the edge off my pains. 

I do try to exercise and eat well, but I’m only human. I get lazy and I like takeaways and annoyingly, these especially apply when I’m on my period, but I would rather give into my cravings than force myself to the gym or to eat greens when I don’t want to. I’m still learning how to manage the symptoms and I’m seeking treatment that’s a little longer term, like having my cysts taken out via medical procedure and hopefully getting new medication.

Long story short, you can live a normal life with PCOS. It is occasionally a little painful and annoying, but the main thing is to speak to someone about it. Suffering in silence because you think your horribly painful periods are normal will only make them worse in the long run. ​