When Chay became bloated whilst studying for her A-Levels, she wasn’t too concerned. Like most teenagers, she assumed it was ‘exam weight’ and it never crossed her mind that it would be something serious. So when she was diagnosed with stage 1A ovarian cancer aged just 17, and later endometriosis, she went from worrying about exams to having to consider having her eggs frozen. Here Chay talks about learning not to take her health for granted and why she’s determined to tell other women about endometriosis and ovarian cancer…
When you’re young, you take your health for granted. Then suddenly, one day, you get a wakeup call and realise just how important health is.
Growing up I’d always had very heavy and painful periods, but I didn’t think anything of it – partly because my mom had told me she had also experienced heavy and painful periods when she was younger. I remember having to take days of school because the pain was so severe.
Whilst I was studying for my A Levels, I remember I started to become very bloated and my stomach felt painful whenever I slept on it. I thought it was exam weight so I started to be more careful with my diet and exercised more. But nothing seemed to have any effect on my growing stomach. Things finally reached a head when family and friends started commenting that I actually looked six months pregnant. We made an appointment with the local GP and on the drive to the doctors my dad (a pharmacist) mentioned for the first time that it could be a small cyst. This was the first time I had even heard of a cyst. I had no idea what it actually was.
The doctor did an ultrasound scan which confirmed that I had a large cyst. Shortly after this, the doctors arranged for me to go into surgery.
After surgery I was told that the cyst weighed 3.7kg and that it had encompassed my left ovary, which meant that my left ovary had to be removed. I was also told that I had mild endometriosis and that within the cyst they found ovarian cancer - stage IA adenocarcinoma.
Knocked for six
Emotionally, I think my diagnosis knocked me for six. I thought I was just going to hospital to have a cyst removed, but it turned into something completely different. From that moment on I went for constant hospital appointments and check-ups. I even met with a genetics team at Southampton hospital to see whether my sister might be susceptible to getting cancer. The genetics team could not find a reason as to why I had got a tumour at such a young age, given that no-one in my family has ever had cancer. I had to consider options to preserve my remaining ovary, such as freezing my eggs, however my doctor didn’t think it was necessary at that stage. I was put on the Pill at 17 and advised to take it continuously back to back without breaks to prevent me getting periods and therefore to prevent the formation of any future cysts. I was also told that the Pill could help with my endometriosis.
My friends and family at the time were really supportive, but I don’t think the seriousness of my surgery really hit me until a few years later. This had a lot to do with my age – I was only 17 at the time, and as bad as this sounds, you don’t see losing an ovary as being terrible because childbirth seems years away. Even the concept of cancer just didn’t seem real to me or my friends.
Following the surgery, I became quite reclusive at school because I couldn’t do sports for six months which meant my activities both in school and outside were restricted. I didn’t perform well in my A-Levels and it was probably one of the most difficult times in my life.
Although my cancer was thankfully in the early stages and chemotherapy wasn’t necessary, there was no cure for the endometriosis. I had lots of follow up scans and a laparoscopy. Now, age 25, I have been referred to an endometriosis clinic, allowing me to see a consultant who advised that I could finally have a break while taking the pill.
Dealing with endometriosis is difficult – it affects my daily life. I constantly have to change my pill and I worry, when I do bleed, that something bad is going on within my ovary.
I want to talk about endometriosis and ovarian cancer to raise awareness amongst young women. Painful and unusually long periods should not be ignored. I think more needs to be done to raise awareness in schools & universities and amongst health professionals to recognise the symptoms of endometriosis (or ‘endo’, as we quite often refer to it) sooner.
It’s about raising awareness that endometriosis does exist and that it could be linked to ovarian cancer. I am current ambassador for Endometriosis UK, and now I want to do something to raise awareness of ovarian cancer.
This is probably going to sound bizarre, but ever since I was a kid I used to tell my mum that when I got older I would adopt or foster children. So when my doctor told me that my chances of conceiving would be significantly reduced given that I only had one ovary remaining, I wasn’t overly distraught. I believe in fate and perhaps this was just something destined for me.
The worst part is living with the uncertainty. Having a new pain – any new pain – can make me think the cancer is back. I have had to adjust my life around randomly bleeding, around the pill and around hospital appointments. Overall though the experience has made me stronger and made me realise how precious good health is. One of my favourite quotes is, Health is a crown on the head of a well person that only a sick person can see. And it’s so true, we tend to take our health for granted until we fall ill.
I have grown to love my scar and my experience because it serves as a reminder of what I went through. I wouldn’t be the person I am today had I not gone through it.
I am now 25 and a trainee solicitor, and from my experiences I hope to able to raise awareness and help other women to spot the symptoms of endometriosis, ovarian cysts and ovarian cancer.