On deciding to write about PCOS (polycystic ovary syndrome), I’ve discovered it’s Polycystic Awareness Month! And as it comes to the end of the month, it’s a good opportunity to write about my experiences of PCOS.
Until a few years ago, I didn’t know I had PCOS. At the age of 25, I had my first cervical smear test and the results came back abnormal so I underwent further tests. What came back from the tests was that I had polycystic ovaries and HPV (despite having both sets of vaccinations at school, being careful with sexual partners and frequently having sexual health check-ups).
I found out that I had PCOS in a very displeasing way. In an empty hospital in late May, I went to the hospital alone* for what I thought would be a quick check-up to see if my biopsy results were abnormal cells and abnormal cells alone. I had a transvaginal (through my vag) ultrasound and the (young) male technician discovered cysts on my ovaries. When I put my pants back on and we discussed the results, I was stunned by his bedside manner. He said (and I still remember this, word-for-word, two years later), ‘So, as you know you have polycystic ovaries’ – no, I did not know this. I asked what that meant and he said, ‘It means you won’t be able to have children.’ I barely said a word. He printed off an information sheet from the internet and said to speak with my GP for more details about my results. I remember sitting in my car, bursting into tears and calling my friend. When I arrived home, I collapsed on my parents’ kitchen floor and sobbed and sobbed.
Fortunately, since then I have read up on PCOS, spoken with my GP and seen a specialist. What I know now and wish the technician knew is that: PCOS does not mean you’re infertile. Granted, having children will be more challenging, but not impossible. In fact, polycystic ovary syndrome affects between one in five and one in ten women in the UK (NHS/ Verity) and there are plenty of treatments for symptoms and problems with fertility. Yet, in my experience, no one speaks about PCOS and it isn’t mentioned in schools or on sexual health forums. Similarly, no two women have the same set of symptoms.
I wondered why this wasn’t picked up earlier and have read that most women don’t know they have PCOS until their mid-twenties or thirties when they are trying to conceive.
Having been on the pill since I was 15, my periods were regular, always falling within the seven-day break. After five years on the pill, I wanted a change so before I turned 20, I tried the implant and this gave me a period that lasted three months, uninterrupted – needless to say, I had it taken out. After I broke up with my long-term partner, I wanted an easier method of contraception that I wouldn’t have to remember to take every day – so I opted for the coil, at the age of 22. Not knowing I had PCOS meant the choice between the copper (non-hormonal) coil and the hormonal coil was little more than a personal preference. However, I have now had the coil in for over five years and it’s time to have it changed. My GP nearly jumped out of her chair when she realised I had the copper coil alongside PCOS. Whilst the copper coil doesn’t necessarily make polycystic ovaries worse, it definitely will not help the situation.
And so, before I booked in to change the coil, my GP suggested we check my ovaries. The check-up was yesterday. My coil is low and may be causing the period pain I’m getting whilst not on my period and my ovaries have become more cystic; two years ago one ovary had cysts on it, now both ovaries have lots of cysts on them.
Once again (in a refrain I have heard more than a few times in the past few years), the sonographer told me to start thinking about if I want babies soon and to crack on with trying to get pregnant. And yet I feel so lucky that I am reaching the time I want to have children in 2019. Research into fertility has progressed so much and there is a wealth of options to help women (and men) reproduce and so the future doesn’t look quite so bleak. Along with my GP, I will work out a form of contraception that suits me and my partner and discuss egg freezing. I’ll share my experiences on this when I find out more.
For support with PCOS:
* I know for some women it is not possible to have a friend, family member or partner with them for these sorts of appointments and I apologise if this is your experience. No matter how independent we are, dealing with health problems is made much easier with a support network around us, and I apologise if I have caused upset. Up to one in five women have PCOS, so do seek out support from others if you feel this would help. Xxx