NI woman breaking stigma of invisible illness affecting one in five females – Belfast Live

When Maureen Busby was diagnosed with PCOS or Polycystic Ovary Syndrome 35 years ago, she was sent away and told to ‘come back when you want to start a family’.

She was given little to no information about the condition, what it entailed or how it would affect her entire life, and now, more than three decades later, sadly Maureen believes little has changed to help women who find themselves in the same position she did.

But that’s why the Co Down native is on a mission to ensure every women across the island of Ireland and beyond can access free and useful information about PCOS as well as a support network of other women who too are living with the illness.

So what is PCOS?

Polycystic Ovary Syndrome (PCOS) is a lifelong metabolic condition characterised by irregular periods, hyperandrogenism and polycystic ovaries. PCOS has largely been regarded in the past as a reproductive disorder.  It is now increasingly recognised that PCOS affects not only the menstrual cycle, hormones and fertility but also metabolism, appearance, mental health, sleep and the risk of endometrial cancer, cardiovascular disease and diabetes.   

The condition is also genetic but Maureen says due to the stigma which surrounds talking about periods, many families don’t discuss it and it often goes undiagnosed when in fact it’s a very common condition.

“It runs it families so there’s a chance if your mother or your aunt has it, you may have it as well, so sometimes it is in families and people don’t even talk about it to one another because there is a bit of a stigma and a taboo about talking about periods and menstruation.

“So there is very little support when you are diagnosed and what people don’t realise as well is that it’s a lifelong metabolic disease, it’s not just solely linked to menstruation and reproduction, it affects our whole body.

“It’s also very, very common, they reckon it affects one in five women, it’s the most common cause of infertility and we have infertility rates in Ireland of one in six, so it’s very high, so there’s a chance there are a lot of women here who have PCOS and may not be aware of it.”

The symptoms of PCOS are wide-ranging and Maureen believes it’s a condition which is largely neglected by health professionals.

“The symptoms are very far ranging they can include anxiety, depression, body image concerns because there is Hirsutism, which is excess facial hair growth, excess body hair growth, irregular menstrual cycles or no menstrual cycle at all, sub-fertility and it also increases the risk of pregnancy complications.

“The other long-term affect is it is linked to womb cancer as well which a lot of people are never told about. The metabolic side of it is linked to type 2 diabetes and cardiovascular risk and it’s lifelong so there’s very little research out there with regards to how it affects menopause, it’s just been neglected.”

On a mission to break the stigma around the condition and raise awareness, the 49-year-old set up PCOS Vitality, an online website and community offering free information and support to women with the illness.

“Now that I am talking to younger women and the situation has not changed or improved much and that was why I decided to set this up because I thought, someone has to do something.

“What drives me to make a difference is my family and thinking of future generations of my family and I want the support there for the younger ones in our family.

“I made the website and now we have a following of 10,000 on our social media and we’ve nearly 100 in our support group on Facebook. I very much wanted it to be an open platform so we work alongside other women’s health organisations and the Royal College of Obs and Gynae to give a patient’s voice to the health professionals and let them understand what it is for this to live with this condition.”

Weight stigma is another issue that goes hand in hand with PCOS and the Newtownards woman recalls how she was ‘weight shamed’ but a health professional before she was diagnosed with PCOS.

“It’s a very serious condition but it’s neglected and it’s invisible and silent. There’s a lot of weight stigma associated with it as well because one of the issues around it is the difficultly in losing weight and you would tend to gain weight in your abdominal area and it’s very much hormonal obesity.

“I went to the Royal Victoria to see a gynaecologist and the first thing he said to me was ‘how did you get here?’ and I said, ‘I came on the bus’, and he said ‘no how did you get here to the ninth floor?’ and I said I came up in the lift and he said, ‘you shouldn’t be this heavy for a young woman of your age.’ He basically scolded me and weight shamed me.

“I actually thought at that point I might have had cancer, I had been bleeding for a very long time and I came in and that was the reception I got, so that has to stop.

“I know that was a good few years ago now but still there’s a problem with seeing the weight, you have to see there is an underlying condition.

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“This is our whole goal is to speak about these range of issues and even speaking about the female anatomy. We want our information on the website to be free and accessible, and anyone regardless of their status should have information on PCOS,” added Maureen.

You can find out more about PCOS Vitality via their website, Facebook or Instagram.

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