When I had my first period at 11 years old, it was a little bit scary, and a little bit exciting. On the one hand I finally felt like “a grown up” but on the other hand the prospect of bleeding once a month until you’re 50 is slightly terrifying. So, when my next period was not for another 6 months, I was mostly just relieved and not really that concerned; after all it’s normal for girls to have irregular periods at first. As I got older my periods finally regulated out but were still only happening every other month, and at 16 I started experiencing stabbing pains in my abdomen when menstruating that left me sitting on the toilet and clutching my stomach in pain. Pain killers had little to no effect and all I could do was curl up with a hot water bottle either in bed or in the medical room at school and hope that they would go away. I took a trip to the doctors and was diagnosed with a condition called Polycystic Ovary Syndrome (PCOS).
PCOS, despite the name, does not mean that women who have it have cysts on their ovaries. Instead, a large number of the sacs or ‘follicles’ inside the ovaries which produce eggs are underdeveloped and so they can’t release an egg. As a result, the ovaries become enlarged and ovulation does not happen. The cause of the condition is unknown, but it is often genetic and can be passed down through families and it is related to abnormal hormone levels particularly higher levels of testosterone.
I was very lucky to actually receive my diagnosis of PCOS; it is thought that 1 in 5 women are affected by the condition, but it is difficult to know for sure as over half of these women have no symptoms. The symptoms themselves are not even particularly distinctive; irregular or no periods, difficulty becoming pregnant, weight gain, thinning hair and hair loss, and acne, all of which can be symptoms of a variety of other conditions. The most recognisable symptom is excess hair growth particularly in areas men usually grow more hair, such as the face chest and back, however many women with PCOS don’t grow excess facial hair or not enough to be noticeable. This leaves a large number of women undiagnosed and untreated. I was only able to get a quick diagnosis as PCOS is known to run in my family; my mother has it and we believe my grandmother did too (although she was never diagnosed either).
The diagnosis itself was pretty simple; a blood test and an ultrasound confirmed our suspicions that I did have PCOS and so we quickly moved on to treatment. There is no cure for the condition but there are medications that can help to ease symptoms; medicated creams can treat excess hair growth, fertility medications can be prescribed for women who are having difficulty getting pregnant (although most women with PCOS can conceive naturally), and the combined contraceptive pill can be used to regulate periods. This was the course of treatment recommended to me and so I began a long journey of finding the right pill for my symptoms. In total I tried four different pills before finding the one that worked best for me, some of these did not contain enough oestrogen to take away the abdominal pain, some contained too much and caused me breast pain instead. Even now, although the pill I am on controls most of the pain, the first day of my period is still pretty debilitating, but it’s probably the best I’m going to get.
It’s easy for people to think that PCOS just affects me once a month, but it’s something I have to deal with every day. As well as painful and irregular periods I am affected by some of the other symptoms of PCOS such as acne and weight gain. The pill mostly controls my acne now, but I was initially also prescribed medicated cream to get my skin under control. My skin is a lot better after four years of treatment although I still occasionally have bad breakouts, but the weight gain is the main thing I struggle with day to day.
PCOS is associated with a resistance to insulin and therefore women with the condition have an increased risk of developing type 2 diabetes and high cholesterol. I have never been the skinniest girl in the world but being diagnosed with PCOS made me realise that my weight was possibly in part caused by my condition and being on the heavier side was definitely not helping my symptoms. I am very petite and being under 5-foot-tall and weighing almost 10 stone put me in the overweight category which is not where any teenage girl wants to be. As well as the increased risk of diabetes and high cholesterol from PCOS both these conditions also run in my family so my odds of developing one of them are doubled. I made the choice that I needed to lose some weight.
I started with exercise; I walked more, I went to Zumba classes, I went swimming weekly, I did a 7-minute high intensity work out every morning but after about a year I was seeing little to no progress. Eventually I came to the conclusion that my unusual hormone levels and possible resistance to insulin meant that I needed to control my diet more than my exercise levels to lose weight. Once I started to count calories and eat healthier foods the weight dropped off very quickly and I lost over a stone in about 6 months. I’m still working on putting myself more comfortably in the healthy weight range by losing a little at a time through both my diet and exercise, but it’s been a very difficult journey. So many people don’t understand the reasons for my weight loss and many people don’t even know what PCOS is. It’s disheartening to be told that you don’t need to lose any weight because you’re not fat when that’s not the reason behind your actions, or to have your pain dismissed because “everyone gets cramps, so you shouldn’t complain about them”.
It’s taken me four years, but I finally feel like I’m at peace with my PCOS, I’ve learnt more about how my body works and how I should treat it since my diagnosis and now it mostly doesn’t bother me. But I’m still young and living with this condition for the foreseeable future makes me very anxious at times. There are so many questions I don’t know the answers to yet: How will being on the pill for around 10 years affect my body? What will happen when I come off the pill? Will all the pain come back? Will I start to gain weight again or will I be able to keep it off? What happens when I want to have a child? Will my body work with me and allow me to conceive naturally or not? Once I’ve had a child will I still have PCOS or will I begin to ovulate normally like some women do? What if I have a daughter? Will I pass the PCOS on to her? Will there be better treatment for her or maybe a cure? Or will she be in more pain than I was?
I can’t answer any of these questions, I just have to wait and hope my body works with me. But I can raise awareness of PCOS and try and help more women to get diagnosed and treated, so that professionals can better understand the condition and maybe help improve the experiences of myself and other women who suffer from it. If you think you may have PCOS I urge you to look on the NHS pages to learn more about it and book an appointment with your GP to discuss it.