Destigmatizing polycystic ovarian syndrome
«Hello Dr Wey, I want to speak with you about a friend of mine. She came to my house and shared her challenges, please it seems it is a woman’s matter and I told her my niece is a doctor. Please can you speak with her?».
I spent a few minutes listening to a woman in her 40s express her fears about living with polycystic ovarian syndrome (PCOS): «Dr, it is scary, and it is not something I can openly talk about because of the shame attached to it» she said.
I work with women in different coastal communities, but I haven’t really paid much attention to polycystic ovarian syndrome. Polycystic ovarian syndrome (PCOS) is a growing concern among women irrespective of geographical location.
PCOS is an endocrine abnormal condition in women of childbearing age (15-49) with associated health risks such as infertility, diabetes mellitus and other cardiovascular complications.
Research reports that experiencing the symptoms of PCOS, including excess hair growth, hair loss, acne, weight changes and fertility problems, can negatively affect mood, self-confidence, and body image. It has also been shown that the longer it takes for a woman to receive a diagnosis of PCOS, the more likely she is to be depressed or anxious. It can be difficult to cope with the symptoms of PCOS especially if you are not aware of the cause.
«Hello Papa, I saw your WhatsApp messages, who has this ultrasound result you sent to me?». As a young medical doctor, I tend to receive a lot of messages and calls about health from family, friends, and relatives. I guess that is where the saying applies to real life, “when you educate a girl, you educate a community.”
My father sent me an ultrasound with a suggested diagnosis of polycystic ovarian syndrome. He kept asking questions and I realised he was focused on the mental health side of PCOS. He responded after a while in Pidgin English, «Na you be doctor, find way make this thing no dey affect the women, abeg you. You get platform to take work». (In english: «you are a doctor, find a way to prevent this condition from affecting women, I beg of you. You have the platform to do something»). It was a call to action to set the ball rolling for an awareness event for women in our local communities.
Mental health is just as important as physical health. Depression and anxiety are common in women with PCOS but are often overlooked and therefore left untreated. For us as African women, the situation is very difficult due to a lack of awareness and the linkage of such conditions to spiritual matters. It is sometimes difficult to separate science from faith as there are myths and facts all mixed up when we talk about issues like infertility in women.
Dr Weyoms - as I am popularly called - «we hide o» (in english: «we don’t tell about that») said a young lady whom I spoke with about PCOS, whilst I looked for support groups in Nigeria.
One of the most effective ways for treating symptoms of PCOS has been shown to be a healthy lifestyle: eating a nutritious diet, being as active as possible and maintaining a healthy weight. However, poor mental health among these women can make it difficult to look after themselves and follow a healthy lifestyle and make the best decisions about their health. One of the keys to managing PCOS successfully is, therefore, to be aware of the effect a woman’s mood can have on managing her lifestyle.
With the right support, education about PCOS and appropriate treatment, women living with PCOS can have their mental health improved. To support this approach, we (Coastal and Marine Areas Development Initiative, a non-governmental organisation, and Institute of Mangrove Ecology and Environmental Resources) collaborated with a local health centre to raise awareness of the PCOS and its challenges.
This event involves the use of flyers, door-to-door engagement in the communities, engaging people through religious institutions and social media posts. There was also support and engagement from local health authorities, the health practitioners of various levels and other relevant stakeholders.
With about 60 participants including men, women and youths, the event helped to sensitize the people from the cluster of communities with discussions demystifying why a woman isn’t yet pregnant, why some women are strong like men, why some women who have beards and excess hair growth are not witches but might have a condition called PCOS and lots more.
A few women were worried to ask questions openly attesting to the reports about stigma with PCOS. One of them took me outside and whispered in Pidgin English, «Docki, you know say them they call me barren woman, so I no wan ask question for open, this na my question…» (in english, «Doctor, you know the people call me a barren woman, so I don’t want to ask my question publicly, this is my question»).
Being diagnosed with a chronic disease such as PCOS can generate a range of feelings and emotions. Each woman’s experience of PCOS is individual and will change across the course of her life, thus treatment should meet her specific needs at any time. Many treatments are available for a range of mental health problems. Some women can benefit from just a few sessions of counselling, while others might need the support of ongoing counselling.
Significant improvements in PCOS research for mental health assessment and treatments remain urgently needed, future research and recommendations are provided to improve the comprehensive care for this common yet under recognized condition affecting women’s health and well-being.
