Published August 2021

Little did I know that when the photo above was taken, I had just under 24cm of tumour inside me!

Last summer at the grand old age of 47 I wondered if I was becoming perimenopausal. My periods were irregular, my ovaries hurt and I had strange pains in my ribs and stomach. I spoke to my doctor and we agreed to monitor it. I felt better for several months before being woken one morning in November with severe pain in my lower right abdomen, nausea and dizziness. After a day of phone calls with the doctor they deduced that it wasn’t my appendix and I may have had a small ruptured cyst. The symptoms from the summer returned and plagued me until January.

January this year came and I had to miss a meeting because my leg went numb and I had to be checked out for a TIA (a "mini stroke"). I was fine and I’d put it down to disc trouble. In February I then started to feel severe pain in my right side and back and felt like I had a urinary tract infection (UTI). I was also drinking massive amounts of water and feeling constantly dehydrated. Shortly after, the scariest thing of all happened……I woke up one morning and I’d wet the bed. This was more frightening than the numb leg! I took part in a charity walking challenge soon after and had pain in my right lower abdomen and leg when I walked over a mile anywhere. 

I was tested for diabetes and plasma viscosity and as a last resort was sent for an ultrasound. That’s when it all kicked off! I was urgently referred to Gynaecology for a further scan. The consultant told me that aspects of my two bilateral ‘cysts’ looked malignant but there were other factors that made her think that there was a very good chance they were benign. She told me that they were behaving like borderline ovarian tumours which aren’t cancer but that I had to be prepared for the small chance that I had stage 1 ovarian cancer. ‘Pooping’ myself doesn’t even cover it at that point!

Fast forward to June the 18th and I had a bilateral salpingo oopherectomy, hysterectomy with removal of the cervix, omentectomy and some fat removed from the peritoneum along with abdominal flushes and full inspection of my bowels and the surrounding area. I’m not going to lie….. the first week of recovery was horrendous. Not to mention having to go into hospital without my family because of Covid and sitting by myself to hear that my ‘cysts’ might be stuck to other organs and I might need a full incision from my pelvis to my chest, and only seeing my daughter for an hour a day. The nurses were also working in sweltering heat because they can’t have fans and everyone looked tired. However I had an amazing surgeon on the day and when he came back to see me he told me I could be very hopeful of a good outcome. I had also avoided the huge scar and had a nice vertical one up to my belly button. I was lucky to have a female anaesthetist too who had had a similar experience and advised me to have an epidural along with the general anaesthetic.

It turned out that I didn’t have cancer. I had stage 1 borderline serous ovarian tumours and my radical surgery means that the risk of them returning is very small. I don’t even need a follow-up. The reason I’m explaining my surgery in detail is because even if my tumour had been cancerous, the early detection and radical surgery would have still given me a good outcome. I’m back at work and my recovery is good but slow, not to mention the surgically induced menopause, but none of it matters because I’m fine. There are benefits, I’m symptom free and I’ve not had a single migraine since the surgery when I used to get them almost weekly.

I had great support from my family, colleagues, friends and my church and this got me through it. I want all my female friends to remember the story about my symptoms. If you Google ovarian tumours, cysts or cancer the classic symptoms are bloating, increased feeling of fullness when you eat, nausea and urinary/bowel problems. However I had only one of those symptoms despite my tumours being almost 12 cm each. I even ate four chocolate eclairs in a row to prove I didn’t have increased satiety- no joke-fear makes your rationale crazy!! If it hadn’t been for the ultrasound I may have damaged my nerves through compression (numb leg) or hurt my kidneys (pressure on my urethra which gave me that UTI feeling) or further down the line the tumours could have spread and become more problematic.

The upshot is if you don’t feel right and your symptoms don’t feel right for you, tell your doctor how worried you are and don’t try and diagnose yourself. Don’t start by telling your doctor what you think it is or Google diagnosing. I’d done a lot to convince myself I was perimenopausal. I Googled my symptoms and matched them all to perimenopause…and that turned out to be nothing more than wishful thinking and minimising genuine fears on my part. I also couldn’t match my symptoms to serious ovarian problems either …. but I had a serious ovarian problem. My consultant directed me to the Ovacome website to learn more about my diagnosis and they told me that women often put symptoms down to perimenopause or menopause. Ovarian cancer often has vague symptoms and is found late because women don't feel anything or seemingly unrelated symptoms are overlooked.

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