Where to start? … The beginning is usually the answer.
I wanted to start my second blog with the diagnosis, because that’s ultimately where the beginning of this blog lies.
I started having problems my periods when I was fifteen. My periods became more irregular, I had a harder time losing weight, I started to grow hair in places that weren’t usual for a female, I started missing school, social events and in typical fashion the doctors dismissed it or tried to force me onto the contraceptive pill. The problems got worse over time and it was suggested I might have endometriosis. After hormone tests and ultrasounds it was suggested I had PCOS.
Over the years I saw numerous doctors – at one point I had seen every doctor in my old surgery who wouldn’t listen and the health nurse I told this to (after she suggested I ask for a second opinion) was horrified. I then moved away to university and the doctors there again didn’t really care less. I saw three gynaecologists, all of whom refused to believe there was anything wrong.
Finally last year after seven and half years (not long over the average waiting time of seven years for a diagnosis) I moved home from university and switched GPs. My new surgery is far better than the one I was with. I saw the family GP, he listened and he agreed to send me to another gynaecologist.
So on December 3rd 2015, I had my normal nervousness, the anxiety that shouted ‘walk out, run as fast as you can, what’s the point in fighting?’ I waited and waited, trying to talk down the voice that said ‘run for the hills’. As I walked the corridor in fear it would be the same again. The gynaecologist spoke with me; we discussed my excess hair, my weight, my periods, we talked about how long this had been going on, we spoke about my blood tests, and then he did another ultrasound scan. He said he needed to speak to the consultant. Naturally when a doctor leaves a room to speak to someone more senior your heart goes through your mouth and you desperately hope they don’t come back to tell you something awful. I asked the nurse if it was a bad sign he’d gone out the room, she replied ‘oh they do that all the time don’t worry’, she probably said this to calm me down, after all that’s part of her job description.
A few minutes later (although it seemed like an eternity) the gynaecologist re-emerged and said the words ‘I’ve spoken with Mrs … and we are in agreement, you have PCOS’.
My grandmother burst into tears, which at the time I remember thinking was embarrassing, especially as I was sat there numb. The feeling I had was almost out of body; I felt like I was a spectator in my own life. It felt like I wasn’t in the room but watching the room. To this day I can’t describe how I felt in that moment because I was just numb. There were no emotions, no words, nothing.
The gynaecologist started talking about PCOS, what it meant now, what it would mean in the future and I listened, I took it in, but it really didn’t feel like me. It felt like someone else was listening, taking notes, that they would relay back to me in the future. We discussed my weight as part of this conversation and I told the gynaecologist how hard I’d tried to lose weight for years and he just said ‘that’s because you have PCOS’. He was the first doctor ever who finally got it wasn’t for the lack of trying. I was then told I’d be referred to an endocrinologist and that I would be able to go back to gynaecology whenever I needed help. Which after seven and half years is great to hear they would finally help.
We left the hospital and all my nan and gramp could say is ‘you must feel relieved’ like they somehow knew what I was feeling. Every time I tried to say I didn’t know how I felt I was greeted with a repetition of this. As helpful as my grandparents are and as much as I love them, at that moment in time I wanted to scream I felt nothing. I just wanted to be left on my own. I wanted to be far away from the world. That night as I lay in bed that’s when the tears started; the emotions came back.
Suddenly I was no longer the woman who had to keep fighting the doctors, I was the woman with PCOS. I was a woman who might have trouble conceiving a child, I was a woman who would struggle with her weight, I was a woman who had a beard, I was a woman who felt like a guy half the time, I was a woman who would have to induce her period. That was scary (it still is).
It took me six months to finally realise PCOS wasn’t going to go away. That the doctors had diagnosed me right. Six months and I was still scared, I was still worrying and I know it sounds naive but I thought I’d have the answers, and I didn’t. I’m now nine months on and I’m feeling better, but I worry myself to sleep some nights, I never know how to approach the conversation with my bosses, I still don’t know how I’ll say to a future partner ‘well my ovaries hate me so here’s the thing…’.
I still hate the way I look, I still hate shaving like a man, I still feel masculine, I still feel ugly, I still worry about medications and I still don’t feel like the diagnosis helped. Deep down the diagnosis did help, it made me a little more confident and it gave me the strength to keep fighting.
What I have learnt is that sometimes it’s the little things that help.
It was after my diagnosis and I made a joke that the induced period would be the first period in years I’d know when I’d be coming on, that I realised the jokes about my ‘beard’ by my best friends, the jokes about being ‘a man’ by my best friends, their bad sense of humour really had kept me going. I grew (a bit) more confidence to say ‘yes I’m fat but I have PCOS and you’re an uneducated idiot for judging me on that’.
I can’t sit here and write that it suddenly all gets better once you hear the words ‘you have PCOS’ because it doesn’t. The thought process you have doesn’t change in a second. But I can promise a diagnosis makes you appreciate little things more, it helps the growth of your confidence and hey it’s better to know and get help, than not to know.