Hindsight is a wonderful thing

I had a totally different blog post lined up for today but I changed my mind after reading Kris Hallenga's (founder of @coppafeelpeople) Instagram post this weekend about it being 10 years since her first visit to her GP and her cancer misdiagnosis. I was struck by some of the similarities between our GP experience and wanted to share my own struggle for a diagnosis. Only we know our own bodies and we have to trust our gut. I completely put my trust in my doctors for 8 months, ignoring my own body and my symptoms completely. 

I first started going to my GP with symptoms of blood in my urine in July 2017. I didn’t feel too unwell, it was just a bit like a mild UTI but it seemed quite bad due to the amount of blood and the fact it had been going on for a couple of days. I’d had UTI's quite a lot in the past but this was definitely very different, there was so much more blood and so much less pain. I thought it best to go to my GP and get it sorted out before it got much worse. By the time I had my appointment the blood was no longer visible and I’d stopped freaking out quite so much. They did a dip test and blood was still showing in my urine, but no sign of any nasty bugs or infection. They said it must just be a mild UTI and sent me away with a low dose of antibiotics, telling me to come back if it wasn’t better in a week. 

I thought little else of it, the blood went away, I finished my course of antibiotics and life carried on. A few weeks later the blood was back, again for a few days. I was annoyed that the infection was back so quickly and again the amount of blood seemed a little alarming. Again I went back to my GP, I wasn’t sure what I was hoping for but deep down my gut was telling me this wasn’t just a UTI. Another doctor tested my urine, again there were signs of blood but no infection, more antibiotics, more come back in a week if you're not okay and maybe then we’ll send it off to a lab for testing. I was frustrated by their nonchalant reaction and I felt like a nuisance for wasting their time with something so minor. 

I went away again, this time feeling a little fed up, why was I getting urine infections this severe, this often. I was drinking plenty of water and keeping myself healthy. I wanted more tests now, not another round of antibiotics. What if it came back again? How long was this going to go on for? I’d already started to google my symptoms and I already knew this wasn’t like any UTI I’d had before. I’d seen the word cancer mentioned a few times and I told myself that only happened to people over 60 and that wasn’t me. Just as I started to get really worried the blood went away completely. I had a couple of months without it and I began to feel good again, maybe it had just been a particularly nasty UTI! 

But sure enough in October the blood was back, although this time it seemed like there was a lot more of it and I needed to wee every 20 minutes or so. I was also knackered and getting out of breath really quickly. I was so tired I couldn’t think straight and my brain was becoming really foggy. This time the sample I showed to another GP was a very deep dark red, the colour of claret. It didn’t stop and I was upset that we wouldn’t have time to clear up a urine infection this bad in time for our wedding in just over a week! 

The doctor suspected kidney stones and decided that this time it might be worth a trip to the hospital just to make sure everything was a OK. So off we went, I had blood tests and a CT scan, I talked to lots of nurses about my symptoms and gave them loads of bright red urine samples, we waited in the hospital all day and half the night for the results to come back and I started to get nervous. I felt like I was losing pints of blood and it didn’t feel good. This was not like the UTI's I used to get, I never felt this tired and I never lost blood like this. Something was different and I was scared. 

We talked about how the hell we would postpone the wedding and what on earth it could possibly be. In the back of my head the word cancer popped up again but I kept my mouth shut and pushed it out of my mind. 

When we eventually got the results the doctor told us everything was fine. They couldn’t test my urine because there was so much blood but my CT scan was clear so it couldn’t be anything sinister. There was also no sign of kidney stones so here was a big dose of antibiotics and have a lovely wedding. She told me to go back to my GP if it ever came back again. 

We left the hospital so relieved! I still wasn’t totally convinced it was just a UTI, but she had told me my CT scan was clear and to me that meant no chance of cancer. I was absolutely over the moon. I took the tablets and the blood went away in-time for us to have the most amazing, worry free wedding! We had a wonderful day surrounded by close friends and family, a picturesque church service followed by a reception in an old barn and mountain rescue base. We drank mulled wine, ate food from our favourite restaurant, toasted marshmallows, ran around with sparklers, made the most of the gin bar and didn’t leave the dance floor once all night! 

A month later and the blood was back, I was going to loo every 20 minutes again and I noticed I was finding it hard to fully empty my bladder. I also hadn’t been able to shift the brain fog that had descended in October and I felt a little like I was living in a permanently exhausted bubble. 

I’d been spending a lot of time online again and was starting to think if it wasn’t cancer (as all my symptoms suggested) what could it be? It seemed like there were some similarities to endometriosis but I wasn’t in any pain and most of my symptoms didn’t quite fit. I found out about bladder endometriosis and began to connect some dots. When the blood came back again in January we were back at the GP’s and he seemed to think endo too. He told us that we may find it hard to have children and made us an appointment with a specialist for a months time. 

I was devastated. We were planning on starting a family later that year, after our honeymoon was out of the way. We decided to move our plans forward because we thought it could be a much longer journey than previously expected. I was pregnant by the end of February and we never did make it on that honeymoon. 

The blood continued through the first month or so of pregnancy but seemed to be much improved. It obviously wasn’t endo though, so what the hell was it? I’d exhausted google the amount of times I’d written, ''can cancer be missed on a CT scan''. You’d have thought this would have been enough of a sign to tell me I should get straight back to my doctors, but they clearly weren’t too concerned and I guess I was in denial. 

When we were told at our 7 week scan that it looked like bladder cancer I knew instantly that it was. I didn’t need to wait for the cystoscopy. I think deep down I’d know for a long time. I wasn’t shocked, I was relieved that suddenly my symptoms were being taken seriously. That I was being listened to properly for the first time and angry that I hadn’t stood up for myself more at every single one of those GP appointments! 

The anger continued to build and in hindsight I wish I'd stood in that doctors surgery and refused to leave until someone took me seriously, ordered more tests or sent me for investigations. It wasn't just my health at stake anymore and I felt guilty I hadn't done more! At the same time I was so relieved that we had gotten pregnant when we did! It was a very confusing and emotional time. 

This post is to urge anybody with a persistent problem or something that doesn't feel quite right to go straight back to your GP and be strong. The NHS are truly amazing and do a brilliant job, but no-one knows your body like you do and what is normal for someone else is not necessarily normal for you. 

If your symptoms persist and whatever treatment you’ve been given doesn’t seem to be working or your symptoms just won’t go away or are getting worse, you need to go back in and fight your corner. 

The stakes are too high not to and you have, potentially, a lot to loose by doing nothing. You only get one body and it’s your responsibility to look after it! 

Thank you for making it to the end of another very wordy post! 

Katie xxx