PCOS (polycystic ovarian syndrome) affects anywhere from 10% to 21% of women worldwide. I am one of them and today I want to share my story.
First of all, let me explain what PCOS is. PCOS is a common condition that can affect how ovaries function.
The three main effects of PCOS are:
- Irregular periods or amenorrhea (absence of a period)
- Hormonal imbalances – usually an excess amount of androgen (the male hormone) which may cause hirsutism (excess facial and body hair)
- Polycystic ovaries – enlargement of the ovaries and appearance of follicles around the eggs (but despite the name, you don’t actually have cysts if you have PCOS).
So, in general, if you have at least two of these symptoms, you might have PCOS.
Since I remember, I always have had problems with my menstrual cycle.
I remember growing up very quickly and I went through puberty early on. I was a normal, healthy kid.
But when I finally reached the age where all my female classmates had a normal period every month, I was still waiting for mine.
I do remember wondering what was wrong with me. I was 17 and without a period. And I could not find the answers I wanted.
Nobody could explain to me what was happening. In my early teens, I went through a massive body change. I wanted to get fitter, so I asked my parents to take me to a dietician to lose some weight.
However, I ended up losing 20 kg, which was a lot considering I was only 13. This could have been the trigger that started my PCOS, but I probably will never find that answer, because nobody knows why some women have PCOS and others do not.
Although this syndrome is very common, it is not easy to detect. There is not much information and research out there is quite limited.
For many years I felt completely lost because doctors would prescribe me the pill, which made some of my symptoms even worse. Doctors tend sometimes to shrug off patients’ symptoms and they prescribe the pill until the patient wants to have kids.
I was particularly frustrated by the fact that I was suddenly gaining so much weight, after struggling for years with body confidence and dysmorphia.
I also noticed that hair was growing in areas like the chin and chest, which is likely to be linked with a hormonal imbalance.
I probably changed two or three gynecologists before finding out that I was actually suffering from PCOS.
When I was diagnosed in 2014, I did not have a clue of what PCOS was. Nobody teaches you these kinds of things. Even doctors, who are supposed to have an answer, sometimes have their hands tied.
I was constantly asked to lose weight, to exercise more, to sleep more.
But symptoms like brain fog, fatigue, constant appetite and anxiety were destroying my daily life.
I was having problems concentrating at school, I sometimes found myself so exhausted that I just wanted to sleep. My gynecologists suggested me the pill once again.
But the pill is just a palliative, it does not solve the problem.
Also, my hirsutism was having an impact on my self-esteem, and I was terrified of the idea that people could think I had hairs on my chin.
I know that I had to take things in my hands and find a way to balance my life with PCOS.
I started using Instagram and Facebook to find other women like me affected by PCOS.
And I was overwhelmed by the number of women who are struggling with this silent syndrome.
But I was also relieved I was not alone in this. The community is huge, made up of women from all around the world. They call themselves cysters and their ovarian cysts as “string of pearls”.
At first, I was reticent about following advice from people I did not know. And I still find it difficult to change my habits. But after time, I started to listen to other cysters, about their different experiences and the solutions they found to cohabit with the syndrome.
In 2016, I finally decided to change my diet, which was not suitable for my syndrome. Thanks to an equipe of researchers at the University of Pavia, I found a dietary plan that did really help me rebalanced my body weight.
Through constant research, I also find a way to exercise weekly, without tiring my body too much. I pretty quickly found out that managing this syndrome is not easy at all.
There are a lot of sacrifices that I am making. I need to be able to balance training, eating and stress management every day, in order to be healthy, which is something that everyone should do, but for women with PCOS it is a fundamental thing.
I know my journey is still long, and I still have things that I do not understand about my body. I still have days where I am tired, so tired I just want to sleep, even after ten hours of sleep.
Also, I know the pill I am taking is not the solution I need, but for now it is enough. I am proud of the improvements I made, and I hope I can inspire other women with the same condition. I found a lot of support, from people I don’t know, and that makes me feel great, because I know I am at least doing something right for others.
To other girls and women with PCOS I would like to say: “don’t give up, I know how you feel, I know the feeling of hopelessness, anxiety and depression that this syndrome can bring, but there are solutions, and you are not alone”.
I really hope that with sharing my experience other women can recognise themselves and maybe find the answers they are looking for.
But most importantly tell yourself: it’s not just about losing weight, it’s not just being over-dramatic, it’s not being lazy, it’s not just using cosmetic to cover your ACNE.
It is so much more, and you should not feel bad for asking help, to seek answers. I know many people around us don’t fully understand what it means to live with PCOS.
It can be frustrating at times.
But remember, you don’t have to convince others you are sick. I myself find out the hard way. Take it as a personal process, a journey to discover yourselves and how your body functions. No matter what others think.
This is my advice, from cyster to cyster.
By Irene Bisoni