Content Warning: This is a bit of a longer read, as it details my own experience struggling with PCOS over the last four years. Some of it is a tiny bit graphic/TMI, as I talk about my period blood briefly about halfway down, so just be aware.
Periods are controlled by hormones. The main ones are testosterone, oestrogen, androgen, and progesterone. Throughout the month, these hormones fluctuate and instigate different stages of the menstrual cycle. Your menstrual cycle actually starts with your period, where the uterus sheds its lining and the non-fertilised egg along with it. The “follicular phase” follows immediately after, during which the new egg develops in the ovaries and prepares to be released, and the uterine lining thickens (in preparation for potential conception later in the cycle). The egg is released in the middle of the cycle – ovulation – and descends down the fallopian tube, where it awaits fertilisation. If it is fertilised, hormones released during the final stage of the cycle (the “luteal phase”) will help the fertilised cell implant into the endometrial layer; if unfertilised, those same hormones help to induce menstruation at the end of the month.
PCOS stands for polycystic ovary syndrome. It’s a condition that causes ovaries to produce benign cysts that inhibit the development and/or release of the egg cell during ovulation. One of its main side effects is affecting periods, as if the egg is neither developed nor released, there’s nothing for the uterus to shed. This can take the form of irregularly occurring periods, lengthy periods, or no periods at all. Polycystic ovary syndrome affects about 1 in 3 women across the world, and yet somehow it never comes up in year 8 sex education, even though it doesn’t only impact periods. Hormones control everything in our bodies – as demonstrated by the far-ranging side effects that PCOS can have:
- Irregular bleeding (in addition to periods, and heavier than spotting)
- Difficulty getting pregnant
- Excessive hair growth on face/arms/legs
- Hair loss from the head
- Oily skin or acne
- Mental health issues
- Abdominal cramps
- Anaemia (iron deficiency)
- Vitamin D deficiency
- Increased risk of Type 2 diabetes
- High blood pressure
I’ve had irregular periods for the past five years. They began when I was 17, due to the stress and subsequent mental health issues caused by A-levels, and family and friendship drama. However, I didn’t realise this at the time; for the first month I didn’t have a period, I was absolutely convinced I was pregnant. As far as I had been taught, the only things that could impact periods were the menopause and pregnancy. I was 17 – I doubted I was going through the menopause. So I decided I was pregnant. Obviously, I was not. I was a virgin. But I couldn’t fathom any other reason for why my periods would just stop. It was only when I happened to read Between Shades of Grey by Ruta Sepetys (the story of a group of Lithuanians deportees following the Soviet occupation of the Baltic States in 1930s) that I found out that extreme stress can stop periods, because it happens to the main character. That, of course, made me feel horribly guilty – as if I was purposely comparing my A-Levels to the trauma of deportation – so I pretended like there was no issue with my periods, and carried on as normal. I told myself that my periods would fix themselves (I did have periods, but very irregularly throughout both years of sixth form) as soon as I sorted myself out. That didn’t happen, so I was kind of convinced my irregular periods were my own fault, because I couldn’t handle A-Levels.
My periods began to regularise a little when I got to university, but only a little. I thought they’d get better and more regular after I started my antidepressants/anxiety medication, but that didn’t happen. I began to just accept that I wouldn’t have normal periods (one week, once a month, until I was like 60-years-old) until university ended, because it must be university, right? I didn’t know anything else could stop periods, so I blamed it on the stress. Which, again – horribly guilty. Why am you so weak? I’d berate myself. Everyone else can handle university. Why can’t you? You don’t see any of the other girls whining about irregular periods. You’re at university, for fuck’s sake. Your life isn’t hard. What are you so stressed about?
It wasn’t until summer last year that my periods got really bad, and by that I mean weird. After having no period since March (and my previous one to that being in January), I had a two-week long period in June. But what was weird(er) about that, was that the consistency and colour of the blood changed over those two weeks in a way it hadn’t before. I won’t go into detail, but it was bizarre. However, I had a period approximately a month later in July, so I assumed that my periods had finally, finally begun to regularise. I was wrong.
After July, I then didn’t have another period until October. But when that period in October did finally roll around, it lasted for SIX WEEKS. I bled consistently, and heavily, for six weeks. Coincidentally, during my July period I had ordered a menstrual cup (provoked by the ridiculously high prices of imported sanitary products in Crete), which had arrived in time for my (wrongly) anticipated August period. Because by October I was using a menstrual cup, I was able to roughly measure how much blood my uterus was shedding. It was approximately 25ml every twelve hours (which is how frequently I had to empty the cup), so 50ml per day. Over 38 days, that totalled 1.9litres. I had lost nearly two litres of blood in a month and a half.
Ironically, I decided to lose some more blood, by having a blood test. I found out that I had an excess of androgen, so I was prescribed the pill as a means of increasing my oestrogen and progesterone. I ended up starting the pill in mid-November, at the end of my six weeks of bleeding. I took the pill for two months, expecting the average week-long period in between, but was surprised by a three week long period from the middle of December, well into January. I couldn’t understand why that was.
Throughout this saga – from July to January – I found myself constantly exhausted. Once university started, I found it difficult to focus on lectures and seminars, much less on assignments. I was also horrified to find myself falling asleep on campus while I was working, or on public transport. The doctor thought it may be due to my mood and antidepressants. Additionally, I realised I had trouble breathing while walking uphill. It’s only a 10 minute walk to university, but I always found myself tight-chested and struggling to breathe. Coincidentally, I had dropped out of my netball team (due to the exhaustion, which I attributed to third year workload), so I blamed by shortness of breath on my lack of regular exercise, and possibly asthma.
One (more) blood test later, I found out that I was “alarmingly deficient” in both iron and vitamin C and D. The doctor told me that she was surprised I was still standing. I was prescribed ridiculously strong vitamin D supplements and decently strong iron supplements, in addition to being instructed to drink a lot of orange juice. But I still wasn’t sure why all those things were happening. It didn’t help that my spirometry test (to diagnose asthma) had come back to say that my lungs were perfectly healthy for someone my age and weight, so I wasn’t asthmatic.
It wasn’t until a conversation with my unusually-well-versed-in-medical-science-for-an-archaeologist housemate that together we realised that everything was connected, and that I had PCOS. We worked out that the cysts on my ovaries were affecting the development of eggs, which in turn were affecting the production of oestrogen. Detecting something was wrong, androgen (the neutral hormone) increased significantly as a means of pausing menstruation until the system fixed itself – which, of course, it didn’t – which explains why my periods just stopped. At some point, I would produce enough progesterone for a period to occur, but the hormone imbalance would keep the period going far longer than normal. That long period would mean I lost so much blood and iron that I became anaemic – of which side effects are exhaustion (hence my inability to keep up with university work), and shortness of breath and a tight chest (which are both also symptoms of asthma). Additionally, vitamin D levels are linked to PCOS, as vitamin D is actually a hormone. It has been found to affect the levels of testosterone and androgen in women, which not only creates menstrual irregularities, but also exacerbates other symptoms of PCOS, including ovulation, infertility, difficulty losing weight, male pattern baldness and excessive hair growth. It has been estimated that 75% of women with PCOS additionally have a vitamin D deficiency (however, in my case, it has more to do with the fact I’m Pakistani and living in England – I’m literally built for warmer climes).
What you’ve probably realised while reading all of this is that at its core, the problem was I didn’t have the enough knowledge to figure out what was going on inside of my own body. I didn’t know that things other than pregnancy and menopause could stop periods, and I didn’t know that hormones impact everything. I didn’t know – or at least I didn’t clock – the connection between periods and anaemia, and I had no idea that anaemia could give asthma-like symptoms. I definitely didn’t expect vitamin D to be impacted by what was going on in and around my ovaries. In hindsight, it’s also pretty ridiculous the doctors didn’t register the likelihood of the cause of my issues being PCOS – and if they did, it’s even more ridiculous they didn’t tell me that that’s what it could be.
All this is the failing of the sex education curriculum in this country. I’ve said it before, and I’ll say it again: as it stands, girls are taught shockingly little about how our own bodies, and even less about our sexual organs. As it happens, the government is introducing compulsory sex and relationships education in secondary schools from September 2020. While this is more than a step in the right direction for girls and young women, it’s a bit too late for me. Had I been taught how to live with my ovaries – or even things that can affect them – back when I’d been told how a baby was made, my period issues probably wouldn’t have dragged on as long as it did. I might even have had it diagnosed and received the right medication back when I was 17, which would have saved me four years of confusion and pain.