I have PCOS. What does that mean for me?

 I was recently diagnosed with Polycystic Ovary Syndrome. I know it sounds crazy but it isn't a chronic pain disorder or something that makes me automatically infertile. Those are the two questions I get about it most. It can be painful, but it is not listed as a chronic pain disorder. This is just my experience and I want to share it because 1 in 10 women (around about) have PCOS and often don't even know.

I started my period when I was 14, so a bit later on the average age spectrum, but still about the 'right' time. I had a period once a year and it lasted 2 weeks with straight bleeding. It was incredibly heavy and painful and I was told not to go back to school until it had gone because it was so bad I basically couldn't function day to day without issues. I went to my GP about this because my mum knew this was not right, and they told me to go on the birth control pill, Microgynon / Levest. This is a standard answer to period problems it seems. I had a great experience on Microgynon and was on it for 8 years. 

I came off the pill just because I wanted to have a more natural body with no fake periods or hormones. I don't think its bad to have the pill at all, I just wanted to try naturally menstruating. The pill had made my periods quite light - medium flow and they only came and went within 3-4 days, every month.

I did come off the pill in December of 2020 and told my doctor. He said that if I don't get a period after a while, around 3 months, then I should call them as something could be wrong with my menstrual cycle. I waited until March and still nothing had arrived, so I called them. They booked me in for a pelvic / transvaginal ultrasound scan and a blood test. 

The scan was fine, it was a bit awkward just on the basis that I had to get my lower half undressed due to a probe being used. It's a painless thing and I wasn't scared for it, just uncomfortable. Luckily, the lady was nice to me and she made me feel safe. I did drink water before I went but my bladder was empty still so I had to have the probe scan pretty much straight away. They put the probe inside you to scan your ovaries. I saw on the screen that my ovaries had weird shapes in them that looked like holes. It was a bit weird and I honestly didn't expect it. I knew about PCOS vaguely as I have a friend with it and also did research leading up to my appointment. The lady told me that I do have PCOS and that I am not ovulating.

I had my blood test done a few days later, which I was scared for because I have had bad experiences with injections before. I wasn't scared of blood or needles, just the fact it could be painful, but it wasn't at all! I was very relieved. I am awaiting my results to see if I have imbalanced hormones, or a higher androgen level, which is very likely, or so I was told.

I guess my symptoms are a bit weird to explain because many women with PCOS don't even have any. Excess hair on your body and face, acne or bad skin and irregular periods are all symptoms that I don't have. I don't have any periods due to anovulation, despite having all my eggs. Putting weight on fairly easily and struggling to lose it are also symptoms of PCOS which I do have. My genetics from my mums side mean I easily put weight on, so I just thought it was that, but it seems PCOS is also to be blamed for my weight issues. I also make bad food choices but that can be rectified. Low blood sugar is another thing that you can get, which I do get if I don't eat every 3-5 hours and my hands start to shake. This was just something I put down to no food but obviously it is due to my PCOS and insulin resistance, so I get low blood sugar. Carbs and sugar are apparently best to be put to a minimum and to avoid gluten and dairy where possible. I eat a vegetarian diet anyway with plant milk instead, so this part is not a big change for me. 

I guess the big question is, am I infertile? I don't have the answer to this. For myself, I don't release an egg to be fertilised. I don't know if this could change, but it seems unlikely. As I say, a lot of women with PCOS dont have symptoms and they have children without thinking about infertility. It seems I will likely, if I decide to have children, struggle to conceive or carry a pregnancy properly. It doesn't mean I can't, just that it will be more difficult. I have never wanted my own children but I am open to that changing if I feel I want to, but obviously this puts that in a weird position. I have always been a sucker for wanting things I cannot have, and I hope that if I am infertile, that I don't struggle with the horrible issue of wanting my own children and not having them. This is a bit scary and I have seen lots of pregnancy stuff online recently, just by accident, and it has made me feel a bit sad about it. Luckily, I have always preferred pets...

I don't write this post for pity at all, it is a common disorder among women and intersex/ trans people with ovaries. I could develop cysts which would have to be removed and I am at a higher risk for things like cholesterol problems and strokes etc. However, this is something I just have to be mindful of. The disorder doesn't affect my life at present, apart from my weight problem, but I would like to think I am ok with it.

If you think you have symptoms or have issues with menstruation then please talk to a GP. The scan and blood test are painless and quick and have let me know why a lot of things my body does...does?

Thanks so much if you read this.