By Michel’le Donnelly
September marks Polycystic Ovarian Syndrome (PCOS) Awareness Month. Each year organisations work tirelessly to raise awareness about the condition and increase education about it amongst the public and healthcare professionals. This reproductive hormonal condition affects up to 1 in 10 people. However, research is relatively limited when compared to other chronic health conditions with similar health implications, especially when it comes to mental health problems related to the condition.
As PCOS Awareness Month draws to a close and we enter Mental Health Awareness Month in October, we must shine a light on PCOS and its effects on mental health.
What is PCOS?
PCOS is defined as a “condition that affects a woman’s hormone levels.” It is typically diagnosed based on the presence of at least 2/3 diagnostic criteria, namely ovulatory dysfunction, hyperandrogenism – that is, excessive presence of testosterone – and polycystic ovaries as identified by ultrasound. According to the National Polycystic Ovary Syndrome Association, PCOS is the leading cause of female infertility and is a precursor for other long-term health conditions including obesity, depression, type 2 diabetes, cardiovascular disease, and endometrial cancer.
Its three main features are:
- follicles in the ovaries
- high levels of male hormones (causing excessive facial and body hair)
- irregular or skipped periods
Exact causes for PCOS are unknown, and there is no cure. Diagnostic challenges means that although PCOS is one of the most prevalent of all endocrine disorders among people of reproductive age, many do not receive sufficient treatment.
Marthé Kotze, 32, was just 15 years-old when she was diagnosed with PCOS.
“I was always an active and slim child but when I hit around 11 or 12, and without changing my diet or anything I suddenly just started developing this pouch of fat around my stomach. By 14 I was really struggling with my weight, I had really bad acne and I was sitting with DD-sized breasts. I had my first period when I was around 13 and then it just went away for the next two years and when it started again, around 15, I was in incredible pain. Like to the point where I was almost fainting from the pain. It was really unbearable.”
Marthé was fortunate that a friend of her mother recognised her symptoms as indicators of PCOS and encouraged her to see a doctor.
“We found a doctor in Bloemfontein who did tests and confirmed that I did have PCOS. I had also discovered that I had endometriosis and at 16 I had surgery to remove all the endometriosis and cysts that had already started growing on my ovaries.”
“I don’t think anyone knew just how traumatic it was for me”
The surgery to remove the endometriosis was successful and the doctor sent Marthé on her way, advising her that she should come back once she was ready to have children. Other than fertility complications, no other implications of the condition were shared with her, including for her mental health – both in terms of the diagnosis or presenting symptoms.
“My diagnosis was very overwhelming and it was very difficult for me to process. My parents did the best they could, they paid for the surgeries, they did everything they could to help me cosmetically deal with it but I don’t think anyone knew just how traumatic it was for me and emotionally how much I struggled.’’
Recently there has been quite a bit of research affirming that people with PCOS are about three times more likely to experience depression and anxiety than people without PCOS.
A 2017 study from the Neuroscience and Mental Health Research Institute at Cardiff University assessed the mental health history of over 17,000 women diagnosed with PCOS. For six months, the study followed patients from the time of their PCOS diagnosis and across routine follow- up assessments. Results from the study found that, compared to women without PCOS, women with PCOS were more likely to have mental health disorders, including depression, bipolar disorder, and anxiety.
Another study from 2020 highlighted that there is indeed an overlap between PCOS and psychotic disorders. The study also highlighted that a lack of recognition of the overlap between psychiatric symptoms and PCOS causes delays in appropriate treatment, which in turn impacts negatively on those affected.
Being diagnosed with PCOS at any age can be distressing but as a teenager, Marthé found it incredibly difficult to grasp and as a result developed an eating disorder.
“Processing it all, learning that I was going to live with this… At that point there was no guidance in terms of being helped with different medications or a diet that was right for me to help manage my weight in a healthy way. It was just like, this is your life and you have to deal with it, and that had a very big impact on my mental health. I actually developed an eating disorder at around 16, 17 and I struggled with bulimia well into my 20s.’’
When it comes to eating disorders, there are a number of studies that show the increased prevalence of binge eating amongst those living with PCOS. This comorbidity presents a clinical conundrum, as current treatment approaches for PCOS emphasise the importance of weight management, diet, and exercise. However, when someone has disordered eating, these PCOS treatment recommendations can further exacerbate the disordered eating.
It took Marthé a decade before she found a doctor who actually offered her alternative and holistic treatments to deal with PCOS. He was also the first doctor who mentioned that the anxiety and depression she had struggled with for years could be due to her PCOS diagnosis.
“It was a good 10 year period before I saw a doctor who offered me an alternative to the pill. Most of the doctors before would check for any cysts and other than that they would say I was fine. But I wasn’t fine, I was struggling so much but they just didn’t care.’’
Marthé is not alone in her experience. Many of those diagnosed with PCOS have reported feeling ‘unseen’ by doctors. An ABC Australia study found that of the more than 250 women living with PCOS, viewed their exchanges with medical professionals in a negative light.
In South Africa, there is very limited research when it comes to PCOS and almost nothing with regards to its relationship with mental health. Dr Aled Rees, author of the 2017 Cardiff University study said: “The effect of PCOS on mental health is under-appreciated. Our work shows that screening for mental health disorders should be considered during clinical assessments.”
“Going to university, all the stress that comes with it, my anxiety just skyrocketed. I struggled so much and it was really only when I was 25 and I found the right doctor who said I don’t have to struggle this much and I was put on antidepressants and medication for my anxiety that I was actually able to function for the first time.’’
Living with PCOS can be quite stressful and not understanding what is going on with your body can be overwhelming. The link between PCOS and an increased risk of depression and anxiety is not clear, however the research that exists points to some factors including issues of inflammation. Caused by PCOS, prolonged inflammation is associated with high cortisol levels, which increases stress and depression. Stress itself can lead to depression and anxiety. PCOS is known to bring about huge amounts of stress, both in terms of the implication of the diagnosis (e.g. infertility) and the lived experience (e.g. symptoms).
What can be done?
For Marthé, seeing a doctor who made the link between PCOS and mental health disorders made her feel like she was given her life back and she was finally able to understand that it wasn’t her fault. Being put on the right medication and finding a doctor who looks at the issue holistically made a massive improvement to her everyday life. She has also found solace from connecting with people through social media and other online platforms.
‘’I have found such a lovely community on Instagram and it’s helped me a lot because it makes me feel like I’m not alone. I don’t have anyone in my life who really understands my struggles. It is different to speaking with someone who can relate so I do think it’s important to find these communities, to get information and just get that support. ‘’
There needs to be a larger effort made within academic research, not just to build upon the current evidence but to ensure that people are receiving the correct diagnosis and the best care possible. Marthé believes that PCOS should always be seen as tied to mental health and they should be treated together. She also argues that recognising the link between PCOS and depression, anxiety, eating disorders – should be taken more seriously by the mental health sector. Psychiatrists and psychologists should make an effort to recognise the link between PCOS and mental health to educate themselves and get people the help they need.
“For any women who have been diagnosed or who have not received one yet, take care of yourself. Make an effort to go to the doctor, get your hormones checked. You deserve to be healthy and happy mentally and physically. Don’t settle for anything else.’’
If you or a loved one have been diagnosed with PCOS and are struggling, please do not hesitate to contact the SAFMH Help Desk at 011 718 1852 for more information about mental health services. Please note that our Help Line is not a crisis or counselling line. If you need immediate help or support, you can also contact the numbers below:
Lifeline: 0861 322 322
SADAG: 0800 567 567
Image by Madison Inouye on Pexels