When I had my diagnosis, it didn’t come as a shock to me – it was more of a shock to others around me. Having to tell my loved ones that I had The C Word diagnosis was the worst part. However, hopefully my story will help others to know and understand the signs and to get checked out what doesn’t seem right.
I was diagnosed with Polycystic Ovaries (PCOS) in my early 20s. My GP told me on diagnosis that I had a 30% chance of ever conceiving and that this percentage would go down with time. At this time I wasn’t with anyone, was quite fresh out of university and certainly didn’t have plans to start a family.
I had been experiencing very heavy and irregular periods for a long time and went to get it checked out. During this time I was put on the pill, had a coil fitted and swiftly removed because my body began to reject it and contract it out. Nothing worked. There is a lot of irony surrounding how birth control can be used to help with gynaecological issues when you have been told you have a low chance of ever having a baby…I have thought about that a lot over the years.
Time moved on and symptoms remained the same. My periods were still the same, but then the irregular periods started. I would have a period then not have another for 2 to 3 months. Where most women would be buying a pregnancy test, I just had to sit there and wait.
I still never found anyone I wanted to settle down with and try for kids. During my whole life since my teens I struggled with my weight – up and down. I know this isn’t helped by PCOS, but I have also always been a comfort eater. It seemed like a never ending cycle (excuse the pun) – nothing seemed to be helping anything else. It was just the way I was.
I’m going to fast forward a few years…in 2014 I met my fiancé. I was 32 then. He’s amazing. We are getting married in April 2021. When we met, we hit it off straight away. I knew he was the one I would spend the rest of my life with. He is 10 years older than me, and had 2 children from a previous marriage. He had also had a vasectomy around 7 years prior to our meeting. On knowing this, I was faced with a decision to stay and forfeit the chance of even trying for children, or leaving and trying to find someone else. I stayed. His children were a gift to me. They are also amazing.
It’s easy to say on hindsight, but I do believe in some way that someone somewhere was shielding me from the heartache of trying and failing to conceive and carry a baby. I have shed many tears over never being pregnant, never being able to know what it feels like to carry a baby and then nurture a child of my own. I have always been maternal and always felt that I would have had at least 2 or even more children. Life and maybe fate just takes over sometimes.
I still had issues with my menstrual cycle and thought I should go and get some investigations done. I was eventually referred to a brilliant consultant who didn’t palm me off or put it down to ‘women’s issues’. She ordered an external and internal ultrasound scan. The results came back and it was decided that I was to have a hysteroscopy for more investigation and biopsies. I had this operation awake with a very non-descript local anaesthetic. They decided it would be better for me to not have general anaesthetic due to my weight. This, at the time, was probably the most painful procedure I have had, awake! I will save you the gruesome details but if you want to know more about what this is like, I will be happy to share. It was at this point that I thought I needed to do something about my weight – for my health and for my upcoming wedding.
The results came back – I was diagnosed with endometrial hyperplasia – a pre-cancerous condition which showed an unusual thickening of the lining of the womb. It is possible to reverse this condition through losing weight and I was also prescribed progesterone tablets. A repeat biopsy was planned for 4 months’ time to keep an eye on the thickness of the lining of the womb.
I started the tablets and continued with my weight loss. Then the Coronavirus hit. The whole country went into lockdown. My repeated biopsies were meant to happen in April, but I had them in June 2020. I was commended for my weight loss and it was hoped that this would have improved my condition, but within 2 weeks I was called to the hospital to see my consultant. I knew that something was wrong, particularly as hospital visits were still few and far between because of COVID-19.
After a restless night, I made my way to the hospital. I had to go alone due to restrictions at the hospital. Masked up, I sat waiting for my consultant and eventually made our way to a consultation room. I was given the news that I did indeed have womb cancer. My consultant apologised to me – she was sure that the condition would have reversed, but it didn’t.
At this point I just want to say one important thing. There are many people who everyday will get a cancer diagnosis. I have close friends living with cancer, my brother’s girlfriend died of a gynaecological cancer in her 20s. My fiancé has lost many family members to cancer. Many families are devastated by cancer every day. This is not a tale of woe for me; I want to make this clear. I am not writing as an outlet to feel sorry for myself, but rather to spread awareness. This has become more important to me since my diagnosis than anything.
It was thought that my cancer had been found early. An MRI scan was booked to confirm this and to be discussed with the MDT panel. I met the Macmillan Oncology nurses who talked to me and gave me a lot of information to read. They also gave me a telephone number so I always knew I had someone to talk to.
I felt quite apprehensive about the MRI scan; having been in generally good health to this point, I didn’t know what to expect apart from a feeling of claustrophobia. Again I had to go to this appointment alone, but this time my sister came with me and sat in the car. I’m not going to say that having an MRI is my favourite thing to do, but it wasn’t as bad as I had thought. It was noisy, and it took longer than I thought but I kept my eyes closed the whole time so I never saw how close I was to the scanning machine.
My results came in and it was confirmed that I had stage 1A cancer. A complete hysterectomy was planned including cervix and ovaries. Despite the restrictions of COVID-19, I had my diagnosis and my operation within 6 weeks.
I am now waiting for the results from the path lab where everything that was taken out was sent to be checked. This will then confirm whether I need further treatment such as radiotherapy. I hope to have a follow up appointment with my surgeon in 6 weeks. I am now in menopause. I don’t know if I can have HRT due to the hormonal issues that caused my cancer.
I will write a follow up blog about my recovery once I have had the results confirmed.
So here I am writing to ask you – if you or someone you know has symptoms that are worrying you, if something doesn’t seem right please get it checked out and don’t be fobbed off. If it’s caught early then it can be treated.