In November 2014, at the age of 35, I was diagnosed with womb cancer which was followed by a total hysterectomy.
My last Smear test was in February 2014 with NHS and the results were normal, no sign of anything unusual. I had never had any health issues and I always lived a very healthy lifestyle.
It all began in August 2014 when my stomach started to get very bloated. I went to see my GP a few times about this issue but she never asked to examine me or even touch my stomach to feel the bloated area. Only after the third visit did she send me to see a Gastroenterologist. They didn’t discover anything and told me that it might be the trend of feeling “bloated” after a meal and that I should take some pro-biotic yoghurt such as Activia.
The following month I went on holiday and for the first time I bled between my periods. Unfortunately, as I was abroad at that time, I put it down to the change of climate and environment. However, I also started becoming very tired and I was feeling lethargic all the time. I didn’t want to look at myself, whenever there was a mirror nearby I was trying to avoid my reflection as I looked absolutely exhausted. I started wondering what was going on with me, was I getting older? Something just wasn’t right, I was not the usual energetic, fun and positive me.
After returning from holiday, the following month I bled again between my periods and I knew this was a sign that something was really not right. I went to the GP again but this time luckily it was a different GP at the surgery and she referred me to a Gynaecologist.
The following week, I was due to visit my family in Macedonia and I decided to see a Gynaecologist there as soon as I arrived.
As part of the regular checks in Macedonia, the Gynaecologist did an internal ultrasound scan (Transvaginal ultrasound) and saw that I had a large Fibroid on my womb. She advised me to have it removed as soon as possible as it could affect my womb if I decided to have children in the future.
That last statement really shocked me. I was so afraid of the thought of an operation, I cried so much and although I was so scared and worried, the only thing that gave me the strength to book the operation was the thought that if I remove the fibroid I would still be able to have children. Although I was due to fly back to London, I plucked up the courage and booked myself for an operation in the next few days, while I was still in Macedonia, as I wanted the support of my family during this scary time for me.
During the operation, the surgeon discovered that the so-called fibroid was not a fibroid at all but was actually a 500g (17oz) tumour that was deeply embedded in the wall of my uterus. After several hours of surgery, the surgeon managed to remove the tumour but I had lost so much blood in the process. My operation was very serious and my life was at risk due to such blood loss. In fact, 2 additional surgeons were called to help to stop the bleeding during my surgery; and thank God they did!
The tumour was sent for biopsy and the results were not good. It turned out I had a rare type of cancer called Leiomyosarcoma. It was a stage 2 cancer and it had already spread into my uterus and both ovaries.
The day after this operation, the surgeon told me that I would have to have a second operation that very evening and that it would be a total hysterectomy, in order to save my life.
That was shocking news for me again, something I had never imagined I would hear, as I had always imagined having children and a family.
I asked for all available options to be explored to preserve my eggs but unfortunately as the type of cancer I had was oestrogen receptive, the doctors were afraid to stimulate my ovaries because this might cause the cancer to come back.
After discussing all the fertility options, I had to agree to undergo an immediate total hysterectomy.
My entire life changed in one day. From that point on I was unable to have children and early menopause began.
After 2 months of recovery in Macedonia I returned to London.
I went to see my GP and explained to her what had happened to me. She was very cold and just said that she was very sorry for my ordeal. My GP never asked to feel or examine my stomach at the time that I was complaining about the constant bloating.
Just to re-iterate, the tumour was 500g! This did not happen overnight! Something that large would have been identified if she had simply tried to touch my stomach at least once. I also didn’t get any information from my GP on what options or support was available for people that have been affected by cancer or what to expect in menopause and how to deal with all the effects. I bought my own books and tried to educate myself as I didn’t get any guidance on where to look for help or advice.
3.5 years later, I am cancer free and I go for regular MRI scans which I will need to continue for at least 10 years. The early menopause has not been easy to deal with and I got all the menopausal symptoms almost immediately after the surgery, such as dryness, mood swings, early osteopenia, hot flushes, low libido and all the rest… It is very hard to have to experience all these symptoms at such a young age.
This experience changed my life completely. I feel that a huge part of me has been taken away and I am now a different person physically and mentally.
After a few years of dealing with all these changes, I finally feel strong enough to openly talk about this huge issue. Women's health is a very serious topic but it is not actually taken seriously. Lots of GP's are not aware of the symptoms of any of the gynaecological cancers.
Our GP is meant to be the first point of contact if we notice that something is not right with our bodies and so basically, our life is in the hands of our GP.
The UK gynaecological health checks need to change. In 2018, the only available option we have to check our reproductive system is the simple smear test which is only done every 3 years and even then doesn’t detect all the cancers types.
What happened to me can happened to anyone else if we don’t change the way women and girls, young and old, are looked after.
The time is NOW! Early diagnosis can save lives. The BEST protection is EARLY detection!