Polycystic Ovary Syndrome (PCOS) affects one in 5 women in the UK, and most of them aren’t aware of it. I have this condition and I wasn’t aware until my mid-twenties, after a LOT of testing due to irregular periods. It is a hormonal condition that affects how ovaries work and comes with a range of not very nice physiological side effects. An imbalance of hormones can lead to excessive facial or body hair, uncontrollable weight gain, difficulty to lose weight, oily skin and acne and irregular periods amongst others. These symptoms can be embarrassing to talk about, sometimes a taboo, dependent on a woman’s values and culture. Long term effects include type 2 Diabetes, heart disease and high cholesterol to name a few. Whilst these symptoms can be difficult to deal with, perhaps the most distressing one is infertility. Most women with PCOS have a number of fluid filled cysts on their ovaries and fail to ovulate. To put that into perspective, I have 28 cysts on one ovary and 32 on the other! Not surprisingly, infertility is the symptom strongly associated with mental health problems.
How does it make me feel?
PCOS is a complex condition and most of the time when people talk about it, you hear about the physical aspects. When I explain it to people, I talk about the physical characteristics and how they affect me. I have oily skin, weight problems, multiple ovarian cysts, insulin resistance and infertility. I can’t recall a time when I have been asked about the emotional aspects of having these side effects and I rarely share this information. Well, I am going to share it now.
When I was first diagnosed, I didn’t really know much about it. I was given the contraceptive pill to regulate my periods and that was that. I knew it had an impact on my weight. I have always struggled to lose weight which is so frustrating and has affected my self-confidence and body image. Although this one gets me down, I know there are lifestyle changes I can make. They aren’t quick fixes, but the more research I do the more I learn. Every month you can guarantee I will have terrible mood swings, although these have improved over the years! Sometimes I just can’t even talk to people and turn my phone off and make time for a bit of self-care, usually watching a film with Patrick Swazye in! My biggest struggle is infertility; I feel it is a huge burden to carry. It can generate a huge range of emotions such as loss, stress, anger, frustration, fear and anxiety. It can be hard to explain this to people who don’t share the condition. The thing I find most difficult is when people tell me their next door neighbour’s granddaughter had 6 kids and she has PCOS. Great. Good for her. That just makes me feel worse. I know people say it with good intentions, but it doesn’t fill me with hope; it can make me feel less of a woman. I have found one way to deal with these emotions is acceptance. I accept that there is nothing I can do about having this condition; I can just find ways to manage it. There are many lifestyle changes and medical treatments out there, they may not work but they are options. There are good and bad days. As well as going through a huge range of emotions daily, I also have anxiety and OCD. Until recently, I had no idea these were linked to PCOS.
Facts and Figures
We can’t ignore the impact that PCOS has on women’s mental and emotional state. Women with PCOS are three times more likely to experience anxiety and depression than the general population. It is difficult to put an exact figure on it, but there are many reports suggesting that 34-40% of women with PCOS have depression, compared to 7% of women without. Similarly, it is understood that 45% of women with PCOS have anxiety, compared to 18% unaffected women. These figures are alarmingly high, yet the reasons for this are unclear, despite a wealth of research. It has been shown that the longer it takes for a diagnosis, the greater severity of depression or anxiety is present. Further research has highlighted an increased risk of OCD, eating disorders and Bipolar Disorder in women with PCOS. To delve deeper into this, it has been discovered that not only do we suffer with these mental health disorders, the symptoms are more severe. I think anyone living with PCOS will agree it can be a difficult and frustrating life at times! For the women who are lucky enough to have children, their offspring are at an increased risk of having anxiety, ADHD, obesity and Autism spectrum disorders. That’s a lot to worry about.
What can be done?
The effects of PCOS on mental health are under researched and underappreciated. Screening for mental health disorders during clinical assessments for PCOS could allow early interventions to be put into place. Additionally, making women aware of the increased risks of mental health disorders could allow them to take charge of their mental health and access therapy or medication. Through personal experience, this condition is often overlooked or dismissed, when in fact it can cause physical pain, life limiting diseases and extreme emotions. It took a long time for me to get a diagnosis of PCOS, after seeing several medical professionals. I didn’t know what it meant or what it was going to do to my body. Being given them contraceptive pill didn’t treat my condition, it just masked it. There is no known cure for PCOS, but there are many lifestyle changes that can help ease the side effects. I find a low carb diet helps with my insulin levels as well as taking the diabetic drug Metformin. It is very difficult to lose weight, but it is possible. I think the hardest thing is seeing people around me losing weight easily; that won’t happen for me, I will have to work twice as hard as an unaffected woman. PCOS makes us crave carbs and sugar all day long. Every day. I am lucky that I don’t have depression and I know how to manage my OCD and anxiety. Each woman with PCOS will have a different experience and will adapt their lifestyle to whatever suits them and that’s fine. It is possible to make the symptoms minimise. PCOS isn’t something I have ever publicly spoken about but I feel it is important to raise awareness of mental health issues that go along with the condition.
By Leanne Jackson, Psychological Researcher
Please check back for Part 2 which will be coming soon.
Denver Arc 