“I was only 22 when it was first found that I had a lump in my womb. It was put down to being a fibroid, a very common, benign, and more often than not harmless lump of tissue.
Apparently only women over the age of 30 get fibroids.
My symptoms got worse and worse and after a year and a half they were finally serious enough to get (still not nearly enough) attention. It was only after having one of the ‘fibroids’ removed in November 2016 at 24 years old, that it was found I actually had very rare uterine Myofibroblastic tumours.
Unfortunately it seems my story isn’t an unfamiliar one.
Time and time again premenopausal women are unaware they can suffer from gynaecological cancers, struggle to get taken seriously by doctors, and take far too long to get a diagnosis. I would like to get rid of the assumption that anyone is ‘too young to get a gynae cancer’.
Although endometrial (womb/uterine) cancer is more commonly diagnosed in women over 40, women of all ages are affected. Largely, on the whole and from my person experience, symptoms revolve around abnormal bleeding. In 2014 I had a scan to check for polycystic ovaries as I still suffered from acne and heavy periods. This is when my first ‘fibroid’ was found, I was told it was harmless and not to worry, and to come back if it became any worse. I vividly remember asking my GP how I would know if it got worse and he simply replied ‘You’ll know’. I was infuriated by the reply, but at the same time my mind was eased in the knowledge that my fibroid was apparently nothing to worry about.
I first went back to the doctors with bleeding during sex, I was examined and found to have an eroded cervix. This can be a result of having high levels of oestrogen over as prolonged length of time, often from being on the pill for several years. On reflection it was probably something far more sinister.
My periods had begun getting heavier, but at this point it was still easy to dismiss them as within a normal range. In autumn 2015, I finally had an incident serious enough to make me step back and think something might be wrong. At the end of a plane journey I stood up and (perhaps from the air pressure), had a heavy and immediate bleed. My trousers were soaked to my knees and I was shrouded with embarrassment. For some reason, young and humiliated, I stood in the passport queue for 40 minutes with my coat tied around my waist, before I was able to retreat to a toilet, throw my trousers in the bin and cry.
Apparently, the thought of making a fuss in that mental state was just too much! I hadn’t been sexually active for several months but the bleed was so heavy I thought the only possible explanation was that I had been unknowingly pregnant and suffered from a miscarriage. The only time I had seen, or even heard of such bleeding was when a woman had a miscarriage, it didn’t occur to me to think of cancer, I was too young for cancer.
I made a GP appointment, and after a two week wait was told by my GP that I couldn’t get re-scanned to check my ‘fibroid’ as it was a one off occurrence. Apparently these things can happen, it was probably stress. I hadn’t been stressed, I told him that… now I was stressed! No effort was made to look into it further, and I got the impression that as I was young, I surely had nothing to worry about. I whole-heartedly believe that if I had been over 40 I would have been scanned and more effort would have been made to determine the cause of my abnormal bleeding.
I went to the doctors several times for gynae problems following this incident. My periods were getting unmanageably heavy. I was having to set alarms during the night to change my sanitary wear and was unable to exercise during my week long period. In January 2016 I started to feel dizzy, light headed and tired. My words started to jumble, and I was unable to keep my eyes open by 2pm. I went to my GP who found I was severely anaemic. My doctor finally ordered scans and by this point I now had two ‘fibroids’. I was finally getting taken somewhat seriously and surgery was ordered. It took 8 months to finally get my one ‘fibroid’ resected, even with me being a constant pain in the ear of the receptionist. In the meantime my symptoms got worse and at one point I was even taken to a&e after passing out in the street.
After getting this ‘fibroid’ removed it was then discovered they were actually extremely rare uterine tumours. The remaining of which was deep in the uterine wall and wasn’t removable by surgery. For several months I was put on a hormone treatment, Zoladex, but unfortunately the tumour continued to grow. In June, at 24, I had a total hysterectomy. I will never be able to bear children, and although there is a good chance I am cured, my future will never be what I wanted for myself. The loss of your fertility is akin to grief, and I’m sure it’s a heartache that I will only truly feel the full power of as I get older and everyone else around me joins the mothers club.
It is damaging to assume health in the young when evidence suggests the contrary; it prevents timely and adequate investigations into symptoms and can mean women getting diagnosed in later stages, which severely affects their chance of survival and fertility preservation. This Gynaecological Cancer Awareness Month, lets ditch the ‘You’re too young for cancer’ attitude and ensure all young women are aware of the symptoms of gynae cancers and make sure everyone has the best chance against these horrible diseases.