TV Editor Sian Allen discusses her experiences with PCOS
Even though one in ten AFAB people have PCOS in the UK, there is still shockingly little awareness about how the condition can impact mental health. Short for polycystic ovary syndrome, PCOS is a common hormonal disorder that is characterised by irregular periods, excessive androgen levels (such as testosterone), and enlarged ovaries. However, symptoms of PCOS can vary widely from hirsutism (excessive body hair growth), thinning hair, weight gain, acne, oily skin, insulin resistance and many other things that depend on hormone levels.
Because the condition typically affects ovaries and disrupts the menstrual cycle, there is a huge focus on how PCOS impacts fertility. This is an important thing to foreground – but in doing so, it becomes easy to forget that PCOS is first and foremost a hormonal disorder that affects people’s brains and bodies way beyond the womb.
As a young person with PCOS, I have struggled to find specialist support that does not revolve around fertility issues. Many people who have it start showing symptoms in their late teens or early twenties – but most only get diagnosed when they are having trouble getting pregnant.
However, for those of us diagnosed with it earlier, having such a focus on the infertility aspect of the condition can be extremely isolating as pregnancy is either a possibility far off in the future or not something we want at all. I believe there is a lack of support for young people with PCOS, as many forums and online spaces centred around the condition primarily discuss fertility. It is crucial to have spaces like that, but many teenagers and young adults with conditions like PCOS or endometriosis need a different kind of support.
I believe there is a lack of support for young people with PCOS
I was diagnosed with PCOS at seventeen, after an ultrasound (cold and weird), an MRI scan (loud, cramped, and weird) and fainting during an embarrassing number of blood tests. It is something that I try to get on within my day-to-day life; I have been lucky enough that the contraceptive pill helps me regulate my periods, so I never miss out on the joys of menstruation. But after years of living with PCOS, I know first-hand that it is not just a condition that affects you physically, but mentally as well.
I know first-hand that it is not just a condition that affects you physically, but mentally as well
People with PCOS are estimated to be three times as likely to experience depression and anxiety as those without the condition – and just like a lot of other things to do with PCOS, the exact reason why is unclear. Given the links to hormone imbalances (not to mention how treatments such as the contraceptive pill are also associated with depression and anxiety), the mental health link is obvious to me.
I have also found symptoms like weight gain and hirsutism have inevitably impacted my self-esteem and consistently made me feel awful about my body. Initially, I was told that just losing a few kilograms would make my symptoms improve, but few healthcare professionals seem to acknowledge how PCOS can drastically slow your metabolism and make weight loss a daunting, practically Sisyphean task. Moreover, the risks associated with PCOS – such as being at increased risk of developing type two diabetes or high blood pressure, have made me paranoid and anxious about my health.
People with PCOS are estimated to be three times as likely to experience depression and anxiety
In a recent BBC News article, Prof Rees, a Professor of Endocrinology at Cardiff University, stated that the link between PCOS and mental health issues is ‘under-recognised and under-appreciated.’ He went on to say that ‘there needs to be a greater emphasis for patients and doctors that any consultation they have includes a discussion about mental health because there is an effective treatment available’, but ultimately did not disclose what exactly this effective treatment is.
Diet and exercise are usually automatically recommended. They are important factors in taking care of your mental health, but especially as people with PCOS often struggle with weight, support for those with the condition needs to go above and beyond a diet plan.
PCOS as a whole still goes under-recognised and under-appreciated, which is staggering considering how many people are affected by it. However, I believe that it is extremely important to know that PCOS is so much more than fertility issues. At the moment, I feel like I may never know exactly how much having PCOS affects my struggles with mental health every day, but the constant fatigue, stress and shame about my body can often be overwhelming.
Young people with PCOS need spaces where they can openly talk about the mood swings, the brain fog, the hair everywhere and everything in-between. There are so many of us out there, and it is so important to know that we do not have to deal with PCOS alone.
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