Why am I being ignored? Coping with Polycystic Ovary Syndrome in your early 20s

SHU journalism student Hannah Robinson is spending her early 20s unable to lose weight, growing excess hair and worrying about her future fertility. She asks, why won’t doctors listen to me?

According to the NHS, 1 in 10 UK women have Polycystic Ovary Syndrome (PCOS) which causes ovarian cysts, increased testosterone levels, irregular periods and more.

The many faces of Hannah Robinson

Other symptoms include difficulty getting pregnant, an inability to lose weight and excessive hair growth on the face, chest and back. If you are diagnosed with PCOS you are also at an increased risk of type 2 diabetes and high cholesterol levels.

With so many uncomfortable symptoms impacting millions of women in the UK, why does everyone diagnosed with PCOS seem to have a story of being ignored and turned away by doctors?

I was 17 when I was first told I had PCOS. I had initially visited the doctor due to my period being nine months late and as I wasn’t sexually active at the time I knew it couldn’t be pregnancy causing it.

I was also gaining weight rapidly, having dramatic mood swings and had dark patches of skin forming around my neck and inner thighs. I was sent for blood tests and an ultrasound scan of my uterus before being referred to a gynaecologist.

I finally thought I would get some answers at this appointment but instead, I was told I had PCOS and to go on Microgynon (the combined oral contraceptive pill) and that I only needed to come back when I was trying to get pregnant.

I was confused as to why I hadn’t been told anything about my diagnosis but trusted that this must be the answer. So, at 17 I went on the pill for three years because I thought it was the best thing for my PCOS. I was wrong.

Although hormonal birth control pills do often regulate periods of PCOS patients, it is not a cure and can often just mask symptoms temporarily. Something that was not explained to me as a 17-year-old girl. By the time I was 20 years old I had gained a significant amount of weight around my abdomen, my periods were non-existent and my mental health had plummeted so I decided to come off the pill.

I am often consumed by the worry of being infertile

Ever since, my body has felt like the broken toy at the back of a shelf with a reduced sticker stating that half of it doesn’t work. Not a bargain, not a good thing, just broken.

I am 23 and I am often consumed by the worry of being infertile, of not being able to have my own family. I tried so hard not to hate myself when I researched the ideal weight for women undergoing IVF treatment and I was almost double the limit. It’s a complete paradox that the women that will likely need fertility intervention the most are the ones who cannot lose weight too.

PCOS is often the cause of other conditions such as one I have, ‘acanthosis nigricans’ which is the discolouration of skin folds that produces thick, dark skin in the affected areas. I suffer from this on the back of my neck, my inner thighs, my armpits and on my stomach. It is believed to be caused by insulin resistance, yet another complication of PCOS.

Insulin resistance is when the cells in your muscles, fat and liver don’t respond well to insulin and can’t easily take glucose from your blood. Over time this causes glucose to accumulate and will eventually change the way your body deals with sugar. Insulin resistance is one of the key reasons why PCOS patients are at an increased risk of type 2 diabetes.

PCOS impacts my entire body, not just my reproductive organs, so why are patients so misinformed? I have seen at least four different doctors, endocrine and gynaecology specialists and nobody has explained my syndrome to me. Why?

Tackling weight bias must start in healthcare

TikTok user @pcossupportgirl is a personal trainer and PCOS advocate who creates regular viral content about the misinformation of PCOS. She believes that weight bias is the main cause of doctor ignorance when it comes to this condition. In one of her resources, it states: “Anti-fat bias is rampant in all parts of society, including medicine. Fat shaming is harmful to health and may even drive weight gain.”

It continues: “Tackling weight bias must start in healthcare. Judgemental responses of disgust, anger or blame from health professionals jeopardise care and discourage many patients from seeking help with their health issues.” Which is the case with many PCOS patients, including myself.

No one should be spending their early twenties worrying about infertility, obsessing over weight loss and fighting against intense hormonal mood swings, but this is the case for so many of us. It’s painful to think at least some of this heartache could be avoided if healthcare professionals steered away from quick, temporary fixes like birth control pills and more towards long-term, permanent solutions formed from intensive research.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

This site uses Akismet to reduce spam. Learn how your comment data is processed.