What Scares Me the Most About Having PCOS

I was probably diagnosed with polycystic ovary syndrome (PCOS) when I was 15. I was having a heavy period and losing so much blood that I fainted once I got up. So my mum took me to the doctor’s office and we left with birth control pills. The doctor didn’t mention anything about PCOS.

It was only three years later that a doctor told me and explained it to me. I had gotten off the pill and my period just wouldn’t come. Not for weeks and not for months.

I was in the middle of my finals in high school. So I told myself: it’s just the stress.

So when exams were over, I went back to the clinic, only this time to a different doctor. This time, she asked me why I got off the pill if I had polycystic ovary syndrome. It was there in my file. Did the previous doctor just forget to mention it?

The diagnosis, along with my diagnosis for Hashimoto’s, hit me hard.
Both changed my life completely, but the diagnosis for PCOS felt a lot more personal. A lot more real. This was probably because I could see the effects of the disease every month. Every month I missed was another month of knowing: I am sick. This is not normal. Something is wrong.

I just graduated high school and the world was supposed to be conquered by me. I had plans to go study abroad. In fact, I was already packing up my suitcase as I was supposed to leave in only two weeks. I wanted to get a nice job after college and then find the perfect husband. Get married, have a career and have kids.

I always wanted to have children. Not a lot, maybe two. I just always felt I really was supposed to be a mother. But suddenly there I was, sitting in the office of a doctor who looked at me with a face full of pity that said, “Better not dream of kids. Better not plan the future. Better not leave now.”

Yet there I was, two weeks later, far from home, left alone with my feelings. Feelings I had not only never experienced before but didn’t expect. Feelings I couldn’t handle and, most importantly, couldn’t trace back to the diagnosis.

I went into full denial mode. I went out too often, drank too much and went home with the wrong boys. Maybe I was just numbing the pain, maybe I was just searching for someone to comfort me, hold me and listen to me.

I felt so lonely. I was all by myself in a city that felt so strange to me, not knowing anyone. I didn’t want to talk to anyone about it. Certainly not with the people I just met. But also not with my mum and dad whom I didn’t want to be worried about me.

After a year, my body just couldn’t cope with my lifestyle anymore. I was exhausted and depressed. I went back home for a week to spend time with my family but mostly to see doctors. I found a new gynecologist who gave me new medication and put off so much pressure. She told me we should meet again in a couple of months to see if the medication worked. That we would find a way for me to have kids and that I should just not wait too long.

I left the doctor’s office, sat in my car and just cried. I was so relieved. Finally, there was someone at least trying to find a solution.

And suddenly it all made sense. I realized that being diagnosed with those conditions a year earlier had sparked all of this. The acting out, the depression, the anxiety.

Sure, I was worried about the present. About the symptoms, especially the ones from Hashimoto‘s. But honestly, I was so much more worried about the future. About reality not even coming close to what I imagined my life to be like. I had lost a dream. I didn’t dare to dream of a future with children anymore. I had so many dreams, a lot of them far from ever being achievable. But there was the one dream that for my entire life I believed would become true. And I just was not sure if this would work out anymore.

When I left home after that week, I felt like I was going in the right direction. I still had a very hard time after returning. I still felt depressed and had to cope with anxiety attacks. Only this time, I knew where all of the feelings were coming from. I now knew how to better handle these very tough days.

I am still afraid sometimes about the whole children thing. I am still afraid of not being able to have children eventually. I am afraid this will scare off potential partners.

I am tired of people telling me that “everything is going to be fine.” Because honestly, no one knows for sure. And if it’s not going to be fine, at least I want to be a little bit prepared for it. And an “everything is going to be fine” will not take away all the fears and hard feelings.

I am tired of people telling me to “not worry about it” because I am still “so young.” I work with a lot of women who are older than me. They are all in their late 20s and early 30s and they are all either getting married or are engaged. And sometimes they tell me, “Oh, you are still so young, you still have so much time, don’t worry about getting married and having children.” And I just sit there and I am unable to say anything when honestly all I want to do is scream at them that I am so f***ing scared and sad and angry. I didn’t sign up for all this shit.

I am so afraid I will miss the chance to have kids because I am not ready emotionally and mentally when my body is. And that when I am ready, my body won’t be anymore.

Now, two years after the diagnosis, I am still struggling. And I will probably struggle until I finally do have kids. But that’s OK. It’s OK to worry and sometimes it might even be good. It led me to change my lifestyle completely. I eat healthy, don’t drink too much and don’t go out more than I should. I do take all the medication and I can feel major improvements. I am not great, but now I know where all of these feelings are coming from.

And I have achieved so much. I made it through my studies abroad, all on my own. I don’t really know where I got the strength to cope with all of this by myself, but here I am. I haven’t fully accepted my conditions, yet I am still learning to love myself, the new me with all the new weaknesses and insecurities – a pretty hard thing to do sometimes. Yes, I am still struggling, but I am OK. I make it through the day. Again and again and again.

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Thinkstock photo via KatarzynaBialasiewicz.