It was way back in 1991 when I was diagnosed with polycystic ovary syndrome (PCOS). At that time the GP could tell me very little about the condition, other than it was to blame for my excess facial hair and lack of periods. I was told that losing weight would also help to get rid of my symptoms. Hmm…
When I saw the hospital gynecologist, he asked if I wanted kids – I said no. I hated myself and the way I looked so much, why would any man be interested in me?! So my regular treatment became the contraceptive pill to get me to have regular periods (didn’t work) and Metformin to help with my insulin resistance and excess weight (not very effective either).
So when Verity asked me for some pass on to women recently diagnosed with PCOS, it didn’t take me long to suggest four!
You are NOT alone
Being diagnosed with PCOS can be a very daunting and scary moment, especially if the healthcare professional who diagnoses you is not really that empathetic. You may find yourself walking away from your diagnosis with little or no information. Hopefully your healthcare professional will have heard of Verity and have access to their amazing information booklets. (currently being updated – I have contributed to the one on Long Term Health Risks). You are not on your own though – there are up to three million women in the UK who have the condition (except two million of these haven’t yet been diagnosed!). But that leaves one million of us who DO know we have the condition, and we’re a very friendly and supportive bunch 🙂
It is NOT all your fault
As with any condition that can be modified by a change in lifestyle behaviour, you can be led to think that the condition is all your fault… “if only I’d exercised more…” “if only I’d tried harder to lose some weight…” “if only I’d had a better skincare routine…” The list can go on and on. But it is not all your fault. Although we still don’t know for sure the origins of PCOS, genetics play an important part in PCOS, as do family history and the environment. So please DON’T blame yourself for the condition or the severity of your symptoms.
There ARE things you can do
When newly diagnosed it can feel like you have been diagnosed with this condition that you know little about, can have a drastic effect on your life, one that can’t be cured, and one that you can do little about. However, there is a lot of things that you CAN do to help your own symptoms and lived experience.
Research has shown that being aware of what you eat can have a big effect on your symptoms – certainly ask for a referral to a dietician or nutritionist has is aware of the implications of PCOS.
Also getting active in whatever you enjoy (does NOT have to be punishing yourself with gym-based sessions!). Obviously with the pandemic, many fun group activities eg indoor wall climbing are restricted or closed. But you could (COVID restrictions permitting) meet a few friends in the park for a walk. Alternatively you can register for Parkrun and start to join the online community and record your own 5km walk/jog/run times. Although the Parkrun community is not physically meeting at the moment, they do hold great quizzes, and produce a timed podcast to listen too while you are out and about.
Focusing on improving your mental wellbeing will also benefit the symptoms of depression, anxiety, and mood swings. Mindfulness has been shown to have some effect, as does having a personal faith. My PhD research is currently looking into ways of improving mental wellbeing by discussing different aspects of it while out walking with a group of women who also live with PCOS.
Research is ongoing, and if you feel able to, volunteering for appropriate and ethically approved research can help you to connect with others who live with the condition, as well as helping researchers to progress treatment of the condition.
Get involved with Verity
Verity is the UK charity, set up in 1997, to raise awareness of PCOS and to support women living with the condition. They have contributed to the All-Party Parliamentary Group (APPG) on Women’s Health, as well as UK and International research. They organise local support groups across the country who meet up regularly (online now due to the pandemic) and are active on social media platforms too.
So yes, being diagnosed with PCOS can be daunting and bewildering… but take a breath, sit down, visit the Verity website, get in touch with your local group leader and get involved.
The future is bright (purple)!
Until next time… Sharon 🙂