Whenever I go and talk at a seminar / conference or share my personal story of living with PCOS, one of my first questions I always ask is “Who has ever heard of Polycystic Ovary Syndrome (PCOS)?”  Occasionally one or two hands go up.  My follow-up question is “What do you think it affects?”  The answer is always a variation of “getting pregnant and having kids”.

What I need you to understand today is that living with PCOS is so much more than just having problems getting pregnant!

As I mentioned in my blog on Day 2, one in ten women in the UK will have PCOS – and roughly 70% of them won’t actually know because they may be struggling with one or two symptoms and be unaware that they are part of a larger syndrome.  Living with PCOS affects women physically, socially, and emotionally depending on the number and severity of the symptoms.

Let’s start with peoples general awareness that PCOS affects your fertility.  It is true – your fertility may be affected.  Due to hormone imbalances it is more likely that your menstrual cycle will not be ‘normal’ and you may well not ovulate regularly or at all. This has an effect on your physical health, for which there are treatments available to help normalise hormone levels in order to induce ovulation.

Fewer people think beyond the physical effects and into the social and emotional effects of fertility issues though.

The societal pressure to have children varies from culture to culture, but can be very strong.  Women who struggle to get pregnant (with or without a PCOS diagnosis) are taunted and traumatised by friends, family, and even strangers!  There is research out there which is heartbreaking to read as it describes the distress and shame that women go through for no fault of their own!

Not being able to get pregnant when you want and with ease also causes friction within relationships.  You don’t need to delve too far into qualitative research on the lived experiences of women with PCOS to hear of stories which include divorce, domestic and physical abuse through no fault of their own. For my PhD looking at the lived experience of women with PCOS,  I did a Qualitative Evidence Synthesis whereby I collated all the published research involving extracts from conversations between women and the researchers.  It broke my heart and brought me to tears reading what happens in others lives.  I need you to understand this.  It is NOT their fault.

(To be continued…)