(This piece was first published on my blog in September 2014)
September is Polycystic Ovary Syndrome (PCOS) awareness month. PCOS is a condition in which a woman’s levels of the sex hormones oestrogen and progesterone are out of balance – this leads to the growth of ovarian cysts (benign masses on the ovaries). Some of the more obvious symptoms of PCOS include irregular periods, weight gain, excess hair growth, acne and infertility. 10 to 20 precent of women within child baring age have PCOS, and many don’t even know.
Although I was not diagnosed until 2009, I first displayed symptoms of PCOS in 2001. I thought I’d write this post about what it’s actually like to have PCOS: the day to day stuff, and some of the more serious issues I’ve had with it. I will warn you, some of this stuff is pretty gross – but I believe putting it all down is the only way to foster true awareness. Not every woman with PCOS has had the same journey as I have – some have a worse time with it, some have such mild symptoms they don’t even know they have it. This is the story of my life with PCOS. When I was in Year 12 (2002) I realised that I’d had my period for a few months straight. In fact, when I actually sat down and counted, I realised I’d had my period for 18 months straight. Not only had I had my period for 18 months, I’d had a non-stop heavy flow for the entire time and I had become anaemic due to the amount of blood I’d lost. I’d put on a lot of weight over the 18 months as well, and I’d started to grow dark man hair under my chin and my acne became worse. Because I was who I was at the time (an introvert pretending to be an extravert), I never really mentioned this stuff to anyone and I didn’t go to see a Doctor. I was 17, and for all I knew the weight/acne/hair was normal and a result of me quitting competitive swimming the year before. The period stuff did worry me, but I didn’t want to be a bother to anyone, so I kept quiet. I had days were I couldn’t go to school or work because my period was so heavy. Sometimes I’d get up in the morning and my body would decide I needed to pass a blood clot, and I would have to call in sick because I couldn’t get off the toilet until it passed – it was like giving birth to a small somewhat squishy baby three times a week (if I was lucky). I used to get so dizzy and nauseas that there were many days where I couldn’t stand. Women with PCOS find it easier to put on weight, and harder to lose it. One of the reasons it’s so hard for women with PCOS to lose weight is the insulin resistance that occurs, this makes the weight shift slower and it also makes you crave bad foods. Think about when you get your period – do you crave junk food? During my worst years of PCOS I ate a lot of junk food, some days I was sure I just had to have potato chips, I felt shaky and I thought I needed them or I might actually faint. The worst years of my PCOS were also in tandem with my depression: I was depressed so I ate for comfort and I ate for my cravings because of the PCOS à the weight I gained from all the eating made my PCOS worse à the worse the PCOS got, the worse the cravings became and my depression got worse too. One day, after I passed a blood clot the size of my fist (and that’s not an exaggeration), I decided that I really had to go and see someone about what was going on with my body. I was subjected to numerous tests, including some VERY invasive ones, and went to see hormone specialists. They found benign polyps on my ovaries, but said because they were benign they were just going to leave them there. No one along this journey – not a single doctor or specialist – had even mentioned the words ‘Polycystic Ovary Syndrome’ to me, and no one offered me any relief from the symptoms. After a particularly bad hormonal spell meant that I had to take a month off work, I decided that I wanted to changed GPs – I was sick of my old doctor telling me the reason I was tired was because I was overweight and that I should take Vitamin C! I changed doctors in early 2009, and had been suffering pretty badly from PCOS for the past eight years. Yep. Eight years where there was only a few times (a day here, a week there) where I didn’t have my period. If anyone ever bitches about having their period to you, tell them I had it for eight years – that should make them feel better. My new Doctor took one look at me, and my chart, and diagnosed me with PCOS on my first visit to her. She switched my current contraceptive pill to one that was designed for people with PCOS (Brenda, Estelle and Juliet being the main versions), and started me on a drug called Metformin. Within a few months I started to see results: my periods actually had breaks between them, the blood clots stopped, my skin cleared up and the hair under my chin grew back lighter. Eventually the Metformin started to make me feel dizzy and nauseas, so I stopped taking it. I am lucky enough to not want children, so the most devastating symptom of PCOS – not being able to conceive – has not impacted my life. I know many women who have had trouble getting pregnant due to their PCOS and I feel for them, it sounds heartbreaking. But, I also know a few women with PCOS who have managed to get pregnant, thanks to prescribed medication, and now have beautiful healthy children. There is hope – just makes sure you have a good doctor, who will recognise the symptoms of PCOS. It has been five years since I was diagnosed with Polycystic Ovarian Syndrome. I still have the syndrome and some of the symptoms haven’t disappeared – the insulin resistance is still causing me trouble, annoyingly – but overall I have improved my quality of life, and my outlook towards it. For more information about PCOS, visit the Polycystic Ovarian Syndrome Association of Australia website.