Polycystic Ovary Syndrome: The Common Disease You’ve Never Heard Of

Almost 1 in 10 women in the UK are diagnosed with Polycystic Ovary Syndrome – why don’t we know more about it? Portsmouth-based blogger and broadcaster Laura Mitchell finds out why.

In August 2016, I sought advice from my GP for a painful case of acne that had been breaking out on my face for the best part of a year. Around the same time, my periods became irregular; they lost sync for six months, and for the next five stopped altogether.

My GP gave me antibiotics for the acne, but also questioned me on other points. Did I find it difficult to lose weight? Yes – don’t we all? Was my hair thinning and falling out? No. I had always had a thick mane of hair.

He rubbed his chin and told me he would like to send me for blood tests. He thought I might have a condition called polycystic ovary syndrome.

Nothing more was said until my blood results came back. My hormone levels were in check, so it was unlikely I had PCOS. However, I was sent for an ultrasound to be sure. The scan showed my ovaries had eggs that were swollen and dotted around like a pearl necklace. After five months of ‘you might, you might not’ discussions with my GP, I was sent to a specialist gynaecologist and finally diagnosed with PCOS in January 2017.

Polycystic Ovary Syndrome (or ‘PCOS’) is a condition that affects the normal functioning of women’s ovaries. According to the NHS, the condition presents in three primary features: irregular periods, imbalanced or high-level hormones, and cysts in the ovaries. These features exhibit various symptoms: weight gain or an inability to lose weight, excessive hair growth on the face or chest, irregular periods, thinning hair, acne, depression, and an inability to conceive and carry a pregnancy.

According to PCOS UK, the condition affects 5-10% of women. How had I never heard of it?

Initially, I struggled with the diagnosis. I felt like less of a woman. To be told that your body cannot carry a child is a horrible thing to hear. I felt empty and without purpose. I had always known I wanted children, but I wanted a life first, a career, adventures. PCOS complicated things. Knowing it could take years to conceive, would I need to start trying earlier than I’d planned? How long would the process take? Should I save for fertility treatment now?

I was upset and confused. I wanted to know more and so, obviously, I turned to the fountain of all knowledge: the internet. This was of little comfort. There were stories of women with PCOS who had taken ten years, and several miscarriages, to get pregnant.; women whose hair had thinned dramatically; women who had developed full beards; women who suffered extreme depression and anxiety as a direct symptom of PCOS. It was difficult to find reliable information to put my mind at ease.

I wondered if my experience was common. Was my GP particularly unsympathetic? Had I just slipped under the radar?

Siobhan Ring, 24, first went to her GP when she was 17. She didn’t receive a full diagnosis of PCOS until she was 22. ‘They sent me to the hospital for an ultrasound when I was 17, which came back clear. Then I went back at 22 for an internal scan and was finally diagnosed. I went back again at 23 because my periods were still irregular. I was only having about two a year. All they really did was put me back on the pill. I haven’t had any more advice from the doctors. Not other than to come off the pill when I would like to have children.’ Siobhan also struggled to find reliable information on her condition, and felt she was left unsupported following her diagnosis. ‘I was never even referred to a specialist. I haven’t really had medical support.’ PCOS is a common condition, so why is information and support so scarce for women in the wake of their diagnosis?

Joe Aquilina, a consultant of sixteen years who specialises in the diagnosis and treatment of menstrual disorders and polycystic ovaries, explains why it is so difficult for PCOS sufferers to find the right kind of support and information. ‘It’s poorly understood by GPs,’ says Joe. ‘For people who are not specialised in it, the understanding is so poor. I teach GPs regularly: they see it’s quite common but in some ways they find it difficult to treat.

‘The criteria includes some women who are completely normal in every sense. Maybe hair isn’t a problem for them. They may find that getting pregnant isn’t a problem, and the excess hair will never be an issue. But you could have someone who’s got very irregular periods, can’t get pregnant, is overweight, and has got all the hair and acne problems. So that variation is quite large. I always tell my GPs that if I see five or six patients a week, none of them have got exactly the same issues. You never see the same two criteria.’

If the understanding of PCOS by GPs is particularly poor, where does Joe suggest women with PCOS turn? ‘I would say the website ‘PCOS UK’ is a good starting point because it’s a local, UK-based site.’ Alongside PCOS UK, the charity Verity runs an in-depth support network for women managing the condition. Verity also hosts events and a conference each autumn, as well as giving talks in schools and hospitals. Local support groups throughout England and Wales are run in their name.

But what about educating people on PCOS before diagnosis? The symptoms of PCOS become most noticeable in young women in their teens and early twenties. Shouldn’t we consider teaching people in this group about the possibility of fertility issues? I contacted Portsmouth School Nursing Service about the information made available in secondary schools on PCOS and received a reply from a school nurse, Nicola Kinahan. Nicola told me that while school nurses no longer run sex education programs, the team contains a qualified sexual health nurse to help students requiring advice.

Though it is comforting to know that girls struggling with PCOS have access to support in their schools, isn’t it time we educated health care professionals and the general public on polycystic ovary syndrome? And is information upon request really satisfactory for a condition so common and so damaging?