As I sit writing this article, I am in agony as I experience period cramps for the third time this month – a bitter and excruciating consequence of Polycystic Ovarian Syndrome (PCOS). The thing is, I barely even knew what PCOS was until my recent diagnosis. Despite the fact that one in ten people with ovaries worldwide suffer from this chronic condition, discussion around it is sparse, leaving most people seriously lacking in common knowledge. Until recently, the most education I had on the subject came from Frances’ experience of endometriosis in Conversations With Friends, which is not even the same condition.
When you google “PCOS explained simply”, it states that Polycystic Ovarian Syndrome is a hormonal disorder that causes infrequent or prolonged menstrual periods, in addition to excess male hormone (androgen) levels. The ovaries may develop numerous small collections of fluid (follicles) and fail to regularly release eggs. To be officially diagnosed with PCOS, two of the three criteria must be detected: high levels of androgens (male sex hormones), lost or irregular periods, and polycystic ovaries.
I have always had issues with my periods, but I passed my worries off, convincing myself that I was overreacting. If you ask anyone who has a period about their time of the month, they will tell you the horrific yet ever-so-familiar details. I got my period before I entered secondary school; I have been bleeding for over 10 years. I am well used to it.
Everyone has different periods. For me, apart from when I was on the pill, I have had two periods a month minimum, each lasting up to seven days. The first periods that I got when I was young lasted for weeks. Teachers used to raise their eyebrows when I handed them a note to miss swimming for the third time in a row.
The three-day stretch before my period helps to indicate when the irregular cycle will arrive. The low moods that I experience in these preceding days are horrific. I remember turning to my flatmate a few months ago and telling her that I had forgotten what happiness feels like. This was perhaps a bit dramatic of me, but nevertheless it shows that the “pre-period blues” (as I like to call them) are overarching and all-consuming. However, on the other hand, I know several other people who do not experience a change in mood in the slightest during their period. Everyone who menstruates undergoes a wide variety of very different, unique symptoms.
“Eventually, it was sex that finally prompted my visit to the doctor.”
Something that always made me insecure was the discomfort I frequently experienced during sex. I suffered through years of painful intercourse but thought nothing of it. I did not realise this was not normal until I mentioned it in passing to my friends, only to be met with confusion. Eventually, it was sex that finally prompted my visit to the doctor. Sex and bleeding go hand in hand for me a lot of the time. There are many reasons for this and it is an extremely common issue for many people, but after bleeding horrifically one night and causing quite the mess, I knew that this intensity of bloodshed was not normal. Though now I can look back and laugh at this incident in retrospect, at the time, I was terrified and the pain I experienced in the days that followed was no joke. Due to this, I decided to go to a gynaecologist and find out once and for all what was causing all of my period problems.
I went to one back home in the North who, for the cost of £300, invaded my vagina and told me that I have a chronic illness with no cure and few solutions.
In order to gain access to this costly examination, I had to circumnavigate the NHS. Admittedly, not everyone can afford this and I consider myself lucky for being in a position to do so. Had I not been, I could have been waiting months, if not years, on an NHS waiting list.
When I was called into the treatment room, it was just me and the doctor. She asked me questions about my periods, my sex life, my hormones, and contraception before I got onto the bed and spread my legs.
“Using a screen beside me that resembled what you would see with an ultrasound, she showed me the cysts that had been on my ovaries from the day I was born.”
Nothing against the doctors and nurses working in the clinic, but that appointment was one of the most uncomfortable experiences of my life. The gynaecologist had a camera inside of me, creating an absurdly unpleasant feeling of pressure that made me feel faint. I also had a speculum inserted, a device that resembles a large clamp that opens you up so they can have a look inside. Using a screen beside me that resembled what you would see with an ultrasound, she showed me the cysts that had been on my ovaries from the day I was born. I just started to cry.
Before my eyes was the cause of everything: my irregular periods, my heavy flow, the painful sex, my anxiety and mental health issues, stomach issues, bloating, low libido. It became clear now that there was a legitimate reason for me not being able to use tampons comfortably or get through my period without using two pads at once. Lying on the bed with my legs spread, everything was pieced together. I wanted to cry, to be held, to be comforted.
When I thought about it, I felt disgusted – like these cysts were a gross invasion of my organs, unwanted clumps growing where they are not welcome. I cannot believe that for years I experienced insufferable period pains, bleeding, and PMS, yet there has been an explanation this entire time.
I am angry at the doctors who put me on the pill at 16 rather than listening to my concerns and checking me out.
I am angry that I did not know sooner.
PCOS is an issue so common that it should be screened for in girls the same way that our hair was checked for lice when we were children.
Currently, the main advice that doctors offer is to go on birth control. That day, I was told that I should get the coil. While the pill, bar, coil, and patch are common methods that thousands use across the country, I do not want any extra hormones or devices in my body. After four years on the pill, I have had enough.
However, different modes of birth control are often a crucial treatment method for those with PCOS and other similar illnesses. It is a relief that the government recently announced that contraception is being made free for women between the ages of 17 and 25 in Ireland. To put it simply, birth control works for some people, but it does not work for others.
Fair play to anyone who can get the bar in their arm or the coil inside of them – the thought alone makes me feel faint. After discussing my options of birth control, I was given a leaflet and a prescription for the patch; apart from that, I was left to my own devices. I did not leave feeling any more informed or educated than I was before I went in. On the drive home, I cried in the passenger seat as I took to Google — never a good idea, but the only viable option I had.
The focus of self-improvement and health blogs is to make changes to your diet, such as cutting out gluten and dairy. I read posts on the matter that joked about the only treatment being a lifetime of painkillers. Women talked about infertility and difficulty with pregnancy. The increased risk of developing diabetes came up frequently. It made me seriously ponder my own future.
“Why are the reproductive system and anything to do with sexual health and wellbeing still taboo topics?”
Approximately the same percentage of women develop diabetes as PCOS; why, then, are we not taught about PCOS in schools? Why are the reproductive system and anything to do with sexual health and wellbeing still taboo topics? There is a serious lack of coverage – from school curriculum to general healthcare knowledge – when it comes to sexual and reproductive healthcare. I had not met anyone else my age who had gone to a gynaecologist and I think that if I had known what to expect, it would have been less of a daunting experience.
I would have liked for this article to be informative, but if I am being honest, I still have a lot to learn about PCOS myself. I remain very uneducated on the matter through no fault of my own.
I am not a medical professional, but I hope that by opening up and placing myself in such a vulnerable position by writing this article, we can move a step closer towards normalising conversations around reproductive healthcare.