I was diagnosed with Polycystic Ovarian Syndrome about 9 months ago. Officially. Funnily enough, an ultrasound nurse told me this when I was 14, and yet my doctors at the time disregarded this and basically told me to come back when I wanted to have children. It all started when I was 12. I went through puberty even though I was told that my Crohns may interfere. I had my first period (bloody hell literally) and I remember being super excited (even though I was in stupid pain). I remember getting the obligatory joke(?) text from my friend saying ‘WOOHOO you’re officially a woman!’, and I remember being somewhat proud of the whole debacle. I wasn’t worried when I didn’t have one the next month, or the month after that, because it’s often stressed to you that you’re never regular at the beginning.
Two years later I admitted to my mum that I hadn’t had a period since. I asked if it was normal. She booked me an appointment at the GPs. We went together and explained what had happened and they originally told me that some people don’t start to late. I didn’t pique their interest until I told them I had started two years ago, and just never…carried on. They transferred me to the gynaecologists and away we went. I specifically remember in our first visit when I lay down behind the curtain so the doctor could prod my stomach, that he began to ask whether I’d begun puberty. He quickly stopped, looked me up and down (specifically taking note of the fact I had breasts) and then mumbled ‘I think your hormones are fine’. He continued to press my stomach in silence before abruptly pulling back the curtain and declaring that we’d do some tests but he was certain it was my crohns just interfering. I didn’t know what to think.
I had an MRI scan to check there wasn’t a tumour on my pituitary gland (I didn’t). They did various blood tests to check my hormones, and they all came back within a normal range. I had an xray to look at my bones, they only thing they really said was that I’d stopped growing. They checked for anaemia, amenorrhea (lack of period due to low weight) and other things, and they all came back negative. According to the tests, I wasn’t making any sense. They eventually sent me for an ultrasound. The lady took one look at them and said ‘you are a typical specimen for polycystic ovaries. These are a textbook example’. I felt lighter, and went back to my gynaecologist with the expectation they’d now tell me what to do. That didn’t happen. They told me that the ultrasound lady shouldn’t have told me that, and that they were wrong. I was not textbook; at the time, I didn’t have excessive hair growth, no weight gain, hair loss, or oily skin. They mainly focused on the weight gain one, ignoring the fact that 4 years previous I’d been diagnosed with (then) indeterminate colitis…funnily enough, weight gain can be a difficult thing for someone who’s intestines don’t work properly. They further said that all young ovaries look that way. Their answer was the pill. For your bones to be strong and for calcium to be deposited, your body requires oestrogen. Long story short, it helps to regulate bone growth. Lower levels mean less bone growth which means thinner bones which can result in osteoporosis. They were worried I’d develop young onset osteoporosis due to the fact I wasn’t having periods and thus wasn’t having that surge in oestrogen. So they put me on the combined pill, and told me I could find out if I could have children when I wanted them.
I was on various different pills for the following 6ish years. I didn’t question it, not until I really thought about it. I was most upset about the possibility of not being able to have kids. Yes, I was young. No, I didn’t (and still don’t) want them. But there’s something about being told that you may not have the possibility ever. It’s more the lack of having the potential opportunity, than actually wanting children right here and now. I was never offered any further information, and was always met with the same response of ‘we’ll do more test when you want kids’ or ‘don’t worry, you don’t want kids yet’. It was all about children, when really, I just wanted to know what the hell was happening inside me.
Fast forward to 3rd year of uni, I’m 20, and suddenly, my illnesses collide. Whereas Greg never seem to care about the pill I took, he suddenly took a lot more notice. As I once explained to my little sister, Greg is the boss of my body when it comes to anything I put into it. He’s the gatekeeper; everything must first be approved by him. If he doesn’t give the big ol’ thumbs up, then you can damn well expect to know about it. Sometimes it makes sense (spicy things), sometimes it doesn’t (peas), but I have to respect the wishes of the boss if I want to stay well. It’s the same with medication. Every medication I take orally must first get past him. Suddenly my pill got the big ol’ thumbs down. Probably combined with 3rd year stress, kidney stones, antibiotics, and a lack of self care because of depression, Greg took a beating and became a bit sensitive. I suddenly had stomach aches and diarrhoea and exhaustion when I hadn’t had symptoms of the sort for a few years. Between me, my GP, and my specialist, we tried everything from changing my diet, my medication, my lifestyle. I probably gave enough blood to support another human being. Nothing made Greg better, until I took my week off my pill. It suddenly hit me that in the week I didn’t take my pill (and thus, had a ‘period’), it was like a miracle cure; Greg was fine. I went back to my GP like I’d just discovered the answer to world peace and she agreed to take me off the pill (as long as I took other precautions…I have a boyfriend, what do you expect). I agreed, and it was like I’d never been ill at all. With the advice to get help if my period never came back, i finished my final year without too many hiccups.
I waited. And waited. And waited some more. I tried not to worry. Come September, it had been 7 months and nothing had happened, not even a twinge. I called the GP, and it started all over again. Another ultrasound and some blood tests later, they diagnosed Polycystic Ovaries. I went back with the same expectation as 11 years ago, that I would finally be told what exactly it is and where we go from now. Again, I was disappointed. My GP at the time gave me the same solution: the pill. I tried to fight against this, telling her that it had made me ill the last time, telling her that I’d rather not do that again. She left the office to chat to some of her colleagues and came back somewhat triumphant: ‘They have the same view as myself. The pill does not interfere with IBD. You are overreacting and making yourself ill, so it is nothing to do with the pill. I am prescribing you 2 months and if you come back within that time, I will not see you. We need to fix your bones, you will be fine’.
She made good on her promise, she wouldn’t see me. I gave up somewhat, to the annoyance of my family and boyfriend, and I just resigned myself to balancing the Crohns alongside the PCOS, and not really knowing what was going on. On a whim I made another appointment with a different GP – I had to wait another month, but eventually I was sat explaining the whole thing again, pleading somewhat for a different solution. My expectation was different this time, waiting for her to kick me out the door with the same stern words as the last, but I needn’t have worried. My new GP looked shocked I’d been on the pill; not only was it basically useless as a contraceptive for IBD sufferers, but what was the point if it was making me worse. She tapped away and told me she could prescribe me ‘the patch’, another hormonal contraceptive that would protect me from getting pregnant AND protect my bones from weakening. She explained to me the basics of PCOS and quickly ran through the solutions if I ever wanted to children. I left feeling 100x better.
So there we are, reasonably up to date. I don’t really know why I wrote this. I feel like a hypocrite to come out and tell you to keep fighting for a diagnosis, or for a solution, or for answers. I was the one who resigned myself, whereas my family fought me to go back and keep trying. Though I will say something, as this has happened to me at some point with all my illnesses: if something doesn’t add up in your body, listen to it. You know it better than anyone. Don’t let someone tell you that their medical experience is enough proof to stamp out your gut feeling, your symptoms, or your bodily interactions. Whether you have one, two, or multiple illnesses, they will all respond and interact in an entirely unique way in your body, and you will be the only one to truly know what it’s like to live in that body. This is the same for how you live with your illness; as long as you stay safe and well (or try to), then don’t let anyone tell you that you’re doing it wrong (and don’t you go telling anybody either!).
I still don’t know a lot about PCOS, so if anyone has any information they can point me towards, or give me any personal advice, I would love to know. As I find out more, and live with it, I will continue to update my experiences. Look after yourself, and everyone else.
Sorry for the long post after an even longer absence. Until next time, thank you.