Real Talk 18th June 2018 by Helen O'Neill

‘I Struggle On A Daily Basis’: 3 Irish Women With Polycystic Ovary Syndrome Share Their Stories

The painful condition affects roughly one in 10 women worldwide.

Polycystic Ovary Syndrome (PCOS) is caused by a higher amount of androgens (male hormones) in women – signs and symptoms include irregular or no menstrual periods, heavy periods, excess body and facial hair, acne, pelvic pain, difficulty getting pregnant, and patches of thick, darker, velvety skin.

Approximately one in 10 women suffer from the condition – we spoke to three women to get their personal experience with the syndrome

Laura’s story 

“I was first diagnosed with PCOS in 2015 when I was 24. I had gone to my doctor because I had no periods for the previous two years since I had come off the pill. I had also started to see a lot of hair growth in places where it hadn’t been before- the sides of my face, my upper lip, my chest and the hairs on my legs were coming back a lot darker and thicker between waxes.

When I went to my GP she suspected PCOS but I would have to see a gynaecologist and have some tests done to confirm. I had no health insurance at the time and I was told the waiting list would be one and a half to two years. Luckily, I had an aunt working in the maternity hospital and I was able to get an appointment within a few weeks and I got the confirmation that it was in fact PCOS. To be honest I got little to no information from the doctor regarding PCOS – I had no idea what it was or how it could affect me. All I was offered was a prescription for Dianette contraceptive pill that would help with the hair growth. I came off this after about three months because the side effects – headaches and almost constant nausea – were not worth the little effect it was having on the hair growth.

I had to do my own research on PCOS at home myself and it was pretty upsetting to know that it would affect me in so many ways in regards to my fertility.  It was also disappointed how little the doctors knew about this condition and there was literally nothing you could do to help reverse it apart from controlling your weight.

In September 2017, I finally got my public appointment. In the meantime I still had no periods, and I was shaving every day trying to control the hair growth. Also each month around the same time there would be an awful popping sensation on one side, I was told this was more than likely the cysts popping on their own.

I got more scans and found out the amount of cysts on my ovaries had increased. At this stage I was married and I wanted to look into the possibility of having children and I was told there was little to no hope of having children without some medical intervention. So now I am on the infertility road taking medication to bring on a period each month in the hope of getting pregnant.”

Sophie’s story

“I was diagnosed last year with PCOS at 27, shortly after my sister it turns out. The first thing I remember being when diagnosed was anger. Looking back I had been dealing with the symptoms since my teen years but was chalked up to stress and teenage hormonal changes. I am a medical scientist myself so I have a general knowledge of many reproductive disorders and the symptoms line up exactly; hair thinning, acne, hirsutism [excessive hair growth in women] and heavy periods with severe cramps.
I still struggle with the effects of these symptoms on a daily basis. I honestly feel let down by my old GP for not looking into other causes when I repeatedly explained how the symptoms were really impacting my life. I asked to be put on the pill for years and only managed to get it when I saw a younger GP to try and tackle some of the symptoms.
The hair thinning, hair growth and acne in particular have had long term effects on my self confidence. Wondering about what people think about the bald patches you can see and the odd dark hair along your neck really is debilitating. Rationally, I know that most people won’t notice, but there is the odd person who will say something without thinking that only reinforces the paranoia. I nearly always travel with a tweezers and spend far too long examining my face and neck in the mirror. The severe cramps I can mostly deal with, I have been cramping for 15 years now; intensity increasing is par for the course.
Unfortunately I had to come off the pill as I have underlying issues so at the minute my symptoms are pretty severe. The best option for me is an IUD, according to my doctor, but at the minute the cost is a little high (€200 here). I am also waiting to see if the government are going to follow through on their promise to make contraceptive options far more affordable.
However I am lucky in that I have recently met other people who have PCOS and having people to rant about it with is utterly relieving. Solidarity makes excellent conversation over pints. Or on Twitter. There are so many people in my life that have been diagnosed and more only in recent years. It also has led me to doing a lot more research into it and the treatments that people recommend. Some of those treatments include “clean eating” as a diet to follow, which on closer inspection isn’t quite as clean as it appears to be.
My journey with PCOS and my own interest and work in science has driven me into looking into non evidence-based treatment recommendations for a variety of conditions. In a weird silver lining it has given me an interest into the different ways people try to sell quack treatments and the trend of pseudoscience. I am now in my spare time reading and trying to write about these things as to maybe try and curb the trend.”

Harnaam Kaur was diagnosed with PCOS at 12 years old, leading her to grow facial hair. She’s since embraced it, and become a spokesperson for the body positivity movement

Catriona’s story

“It actually took a good few years to be told exactly what I had. When I first hit puberty at 13, my cycle was all over the place which is completely normal for most women so left it to sort itself out. My bleed would last anything from seven days to 21 days. At 15, I went to my GP to get it checked because obviously this amount of bleeding and pains, which used to have me bent in two and on several pills, meant my doctor referred me to a consultant in Holles Street.

I got my appointment around the age of 16 and after a year of going back and forth to the hospital, with several blood tests and ultrasounds showed that my ovaries were full of little cysts which was causing the extra pain – I was finally told I had PCOS.

At the time didn’t really understand it. I was told that I had a lot of the symptoms of PCOS, such as the strange cycle, too much hair on my body in areas that woman normally would have much of it, acne (which I was like, what teenager doesn’t have it), difficulty with weight, anxiety and depression. Hearing all this from a doctor gave me understanding and answers to why I was slightly different.

I was told that there is no cure for PCOS, and that it would be hard for me to have kids. Also being told that with PCOS you are more than likely to develop more health problems in your adult life, at that age all of this was very hard to take in. Within the time that I attending the hospital for this, I was sent to a psychiatrist and a dietitian. In some ways it helped, but not entirely.

When I was 18, I was back with my consultant for a check up and she informed me that I could get such thing as a coil fitted in my cervix, which is filled with hormones that are released to help balance out the hormones causing PCOS. Within a year of getting the coil, the drastic change in the symptoms was surreal to be honest. My cycle sorted out that some months I don’t even have a proper bleed, my acne lessened, and while the hair unfortunately didn’t, the pain dropped hugely. I still have pain but nothing like it used to be. I honestly didn’t know myself.”

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