News & stories Personal stories Elizabeth Published August 2020 First symptoms I first noticed symptoms in September 2015 when I was 19 years old and had just gone to university, and knew that something was wrong. Over the space of a few weeks, I noticed that I was getting tired very quickly, getting full very easily and struggled to keep my food down when I did eat. At first, I put this down to the student lifestyle. I was not eating the best foods and I was drinking a bit too much during fresher’s week, so I decided that I needed to overhaul my diet and lifestyle. After a few more weeks of eating very healthily and looking after myself, I noticed that my symptoms had not changed. If anything, they were getting worse. My stomach was now solid, and I was getting terrible lower back pain that radiated down my legs, making them feel numb. I could not go to the toilet and I had constant, awful heartburn. My periods were still regular and normal, and I did not think about the fact it could be related to this at all. Misdiagnosis I went to my GP straight away to discuss my symptoms; he suggested that it was irritable bowel syndrome and prescribed me some laxatives and advised I avoid certain foods. As the symptoms of ovarian tumours and IBS are so similar, I took my doctors word for it and did not think any more of it. However, for the next year, I continued to have the same symptoms and became very depressed because my quality of life was pretty poor from being in so much pain. At this point, my stomach had distended so much that I looked like I was pregnant. The distention never went down either and was very persistent. I went to another doctor, and then another doctor, who also said it sounded like IBS, so I just kept plodding along, trying all kinds of diets, taking laxatives, going gluten free and trying to live as healthily as I could. I felt incredibly hopeless, missed a lot of my lectures at university and ended up dropping out when I was 20. I had really hit an all-time low and did not feel like I was being listened to. Turning point The turning point happened in November 2016. I was keeled over on the floor in excruciating lower back pain that was radiating through the left side of my stomach. I decided that this time, I would go straight to A&E. Even when I got to the reception desk, the lady said that they could not do much for stomach pain, but I insisted to be seen and listened to. Unfortunately, the doctor did an X-ray and said it could possibly be constipation. I was completely humiliated and was sent home with laxatives, which did nothing of course. I knew in my heart that something more was going on and felt completely confused and frustrated. I was not a doctor, but I knew my body and knew that there was no way it could be IBS or constipation. However, I was referred to a colorectal consultant for a CT scan as an outpatient. The appointment wasn’t until February 2017, so I had a further wait and my stomach was continuing to grow. By this point, it was obvious that something more was going on and it couldn’t be disregarded as IBS anymore. Surgery and diagnosis I saw the consultant in February 2017 and immediately he said that he did not think it was IBS and suggested that it was gynaecological. I had never considered, due to lack of knowledge, that it could have been anything to do with my ovaries, but as soon as he said this, everything started to line up and make sense. I had a CT scan which revealed a huge mass on my left ovary. At the time, they believed it was an ovarian cyst. I was put on a waiting list for surgery and in May 2017 I had a uni-lateral salpingo oophorectomy via laparotomy. The mass was removed, along with my left ovary, fallopian tube and part of my right ovary. They drained 8 litres of fluid from the mass and I just could not believe it hasn’t been found sooner. Overnight, my stomach had become flat again and the pain was gone. The mass was sent for a biopsy and was revealed to be a Stage 1 mucinous borderline ovarian tumour. I did not know what this meant for me. They explained it was not cancer, but some of the cells within the tumour were cancerous and they believed had it been left any longer that it could have developed into ovarian cancer. Due to my age, they conserved my right ovary and in January 2018, I had to have a second operation to remove my appendix. . . Moving forward I was given a leaflet all about Ovacome. I called them on the phone, and they were so kind, answering all of my questions and reassuring me that everything was going to be okay and that it happens to more young women than you may think. I was so incredibly lucky that the tumour had not progressed to cancer, but it highlighted to me how uneducated most women are about the signs of ovarian cancer and how GPs need more training to be able to spot the symptoms. I now have regular scans and blood tests to make sure everything is okay, and my quality of life is amazing. I began a degree part time and am hoping to one day apply for graduate entry medicine so that I can become a doctor and hopefully a gynaecologist. I have used my social media platform “The Study Gene” to try and raise awareness and money for ovarian cancer research and to help any women going through the symptoms to recognise them early and seek help. Had I known what to look for, it could have been managed sooner. I am so grateful to the team at the hospital who helped me and to Ovacome for making me feel like I was not alone. It may not have been cancer, but it did change my life and now I want to raise awareness as much as I possibly can. Early diagnosis really can save lives. .