Polycystic Ovarian Syndrome (PCOS) affects 1 in 5 women in the UK. It’s a hidden illness with a large number of symptoms, from depression to excessive hair growth to possible infertility, hindering women in a variety of ways by weakening them and impacting their mental and physical health. For such a severe, and incurable, condition, there’s not much conversation surrounding the topic, or even awareness.
In my mother’s side of the family, there are nine women amongst us cousins including myself. Out of us nine, three of us have PCOS, and another has endometriosis. It’s not something we talk about much, or even know about, prior to being diagnosed with it. I was 15 when I first got diagnosed with PCOS, after not getting my period for six months, and then being on it for a whole month, when I finally did. Irregular periods are one of the main signs and symptoms of having PCOS, a problem I’ve had since I was nine years old.
Most common ones:
- Irregular periods
- Higher levels of male hormones, which can cause an increase in facial/body hair (face, chest, back or bum)
- Polycystic ovaries à ovaries can become enlarged and filled with fluid-filled sacs (follicles) surrounding eggs (but cysts are not always a symptom of PCOS)
Less common, but still symptoms of PCOS:
- Mental health issues, such as depression
- Difficulty losing weight
- Possible infertility issues OR will be harder to conceive
- Hair loss
A doctor I spoke to about my personal fears of infertility told me not to worry about not being able to conceive, many women with PCOS have children (my cousins included, as well as my boyfriend’s sisters mates who have it). But the journey to become pregnant will be harder for some. The reason it may be difficult to get pregnant is due to PCOS causing irregular ovulation, alongside periods, or failure to ovulate.
There is no cure for Polycystic Ovarian Syndrome. Many sufferers of this illness are given birth control to combat it. I don’t take birth control for it, and when I was prescribed it at 15, I took it for a few months but didn’t notice any change in my irregular periods so I stopped.
We are made to deal with PCOS ourselves, with no support and not much information on the best methods to try and fight it. All the information I’ve found on it, I researched myself, from Googling the best diets to increase vitamins and nutrition for battling the higher risks of developing diabetes, to be able to reduce the risks of weight gain and obesity and everything else that falls under living with PCOS, to how to, when the time comes, try and increase chances of pregnancy, from what foods will help to different methods, such as yoga and other exercises.
The impact PCOS has on mental health is pretty severe.
Low self-esteem and depression, as well as anxiety, are battles I’ve been fighting for over a decade, never really knowing how it began. The guilt from eating a bar of chocolate or a cupcake weighs heavy on my conscience, because I’m scared of gaining weight that I won’t be able to lose, because I can’t look in the mirror without hating the person I see. I’m a living paradox, loving myself more than I have in recent years and being proud of the little I have accomplished, but hating everything about the way I look.
It’s a tough journey to venture through, and having to constantly be doing research on the best ways of dealing with it, alone. The lack of conversation, awareness and support around PCOS is detrimental to the mental health of women, from the fears of losing a baby because of not being able to carry to full-term, to not even being able to get pregnant, to the body image and various other illnesses it can cause to the pain from cysts and periods. It doesn’t end and barely anyone even knows about the severity of this illness, because it’s not talked about.
From the stories I’ve read about, I know women who suffer from PCOS are deemed important when they decide they want to get pregnant. Why is that the only time they’re taken seriously? It’s unfair. And even then, there is a wait time: two miscarriages. Medical intervention needs to happen before deciding to conceive, and even during that period of trying to conceive, instead of waiting for a heartbreak to completely shatter a woman. I need a doctor’s help and support from the moment I decide I want to get pregnant, through to the time I hold my baby. We need more discussion around how to cope with living with PCOS and the effects it has on our wellbeing, because simply being given birth control pills and sent on our merry way is not enough.
Being able to raise awareness on this topic is essential, because it affects so many of the population. The consequences of it are terrifying.
Organisations like Verity, PCOS Awareness Association, PCOS Challenge are helpful to learn more about the illness and to find some support. PCOS is too common for there to be such little knowledge of it.