This post will not give you any answers. Mostly because I don’t bloody have any. And according to the overwhelming response from many of you yesterday, neither do you. The amount of messages I got from people who were as clueless and frustrated as me was scary. For a condition that affects 1 in 10 of us, there is very little information on it and our doctors don’t really know what to do. At least, that is the experience I have had and the experience that many of you seem to share. If anyone has had a positive experience of the treatment of it then please get in touch. However, if you’re reading this to get any answers then I am afraid you have come to the wrong place.
Instead, I thought I would share my story in the hopes that if anyone thinks they are alone in their experience then they will realise that they are not. Before I mentioned anything about it on my social media I thought the same, but the amount of girls who replied with their stories that were scarily similar to mine made me realise that this isn’t an issue of the few.
I’ll start from the very beginning. I have been on the pill since the age of 16 (I am 23 now) with a space in the middle where I decided to take a break from it. I was in my third year of uni, so I was about 20 years old, and had already been taking the combined pill for about 4 years. I wanted to give me body a break from it and it seemed like a good amount of time to do so. The problem was, once I stopped taking it, my period never came back. After six months, I went to the doctor who told me not to worry, “it only really becomes a problem after a year”. So another six months goes by and I dutifully go back to the doctor and explain I haven’t had a period in a year. I am told once again not to worry, that this is actually really normal (is it?) after being on the pill for so long. Another three months goes by and I figure enough is enough and I demand more tests.
Eventually I was given an ultrasound. They found lots of cysts on my ovaries and I was diagnosed with Polycystic Ovary Syndrome (PCOS). Simple right? Definitely not.
Despite having the two main symptoms, a lack of period and THE CYSTS, they still seemed a bit confused. Because of my lack of the other symptoms: hair growth, being overweight, acne etc, it was suggested that my time of being underweight could have caused my lack of period more so than the cysts themselves (and in fairness at the point I decided to stop taking the pill I was at a really low weight). Throwing this into the mix just added even more confusion. They never really decided which it was but I figured having actual cysts on my ovaries would a be a big enough indicator.
Anyway, I have a diagnosis – great right? Not really. Their solution, and the solution many of you seemed to have been given, was to go back on the pill. The very thing I had been taking a break from when I realised my issue. If any guys are reading this or anyone has no idea, the pill pumps your body full of hormones and when you take your weekly break every month, the “period” you get is actually just withdrawal symptoms from the pill, not an actual period.
I felt like I was literally sticking a plaster over my problems. Thinking about it, I haven’t had a natural period in seven years, which worries me immensely. I went back to FOUR different doctors saying that I wasn’t happy with my treatment and they all spouted the same thing, as if line by line from a textbook (which is probably was). Being on the pill gets my body used to having a period and it gets rid of the womb lining so there is no build up.
I asked about fertility and what happens when I want to have children. Obviously I need my body to have a period in order to be able to conceive. They told me not to worry, I am young and that is something they can deal with when the time comes.
Right. I definitely don’t want kids right now – in fact the older I get the less I think I want children full stop – but I still like knowing that the option is there. I don’t want to get ten years down the line and realise it is too late. That actually it is not possible. The thought of that breaks my heart.
Since being diagnosed, I have been back on the pill and so far it has been fine in the sense that my body has been ticking along, albeit in a hormone induced manner. Part of me wants to go off it and see if my body has healed enough in the past few years, but that thought scares me as well. I WANT to listen to the doctors, even if i’m not sure I agree with it.
I am lucky in the sense that the only time I really get symptoms of it, in the form of mood swings, anxiety and fatigue, is when my body is under stress. I have started doing my own research and have been finding ways to deal with those and so I always attempt to put my body under the least stress possible. However working full-time and studying for a masters means that this cannot always be the case. I think the fact I already eat healthily and move my body is a reason why some of the other symptoms weren’t so apparent. I don’t have any of the physical symptoms and for that I am lucky.
There you go. I hope that this helps someone who might be going through the same thing and feels alone. I hope this opens up some conversation around it and I would love to hear your stories or ways of dealing with it. And please, if anyone suggests to me that reducing my carb intake will help, I will punch you in the face.