My story started in October 2013. I was 19 and at university for the first time, living on my own and I got my first ever UTI. It was awful, I’d never felt pain like it, each time I went to the loo, it was agony when I tried to pass urine. I had lower stomach pain, pain in my kidneys and most frightening of all, blood in my urine.
Having never experienced this before, I called my mum. I was so lucky because she drove to uni to collect me and she took me straight to a local urgent care centre. They sent my first sample to the lab which came back positive for bacteria – but the niggling feeling never went away even with a 3-day course of antibiotics that they prescribed.
Sadly, for various reasons, I ended up leaving university. For three years after leaving, my life was a constant battle of wondering when my next acute attack of UTI would occur. They were on occasion sex related but would also come on after exercise or just normal stress! There wasn’t a point in the day where I didn’t think about them.
I started an apprenticeship which was office based. I was getting up to go to the toilet constantly and drinking water all day. The doctors kept prescribing three day courses of antibiotics which would help the symptoms subside but the symptoms never fully disappeared and would come back as soon as the antibiotic courses finished. I had searing pain, felt constantly uncomfortable, fidgety, there were sharp stabbing pains in my kidneys and bladder with the whole area feeling so sore. I spent too much of my time hunched over in bed.
Time out from daily life and the UTI emotional rollercoaster
So many days I spent off work, in pain in bed. My kidneys hurt, I cried all the time, I was scared to leave the house. I barely saw my friends, my relationship with my boyfriend at the time was strained, no one understood. I was lucky enough to be invited on holiday with his family a few times however on both trips, I got sick and had to hide it, they thought I was just grumpy.
There was a point where I couldn’t exercise. I was scared to eat certain foods, certain drinks. I didn’t want to go out and I stayed in all the time. It was so tough to see my friends going out and I was upset that it had been taken away from me. I was quick to anger with family and friends and could be short with people when I wasn’t feeling well. I knew this wasn’t me but what could I do, my ongoing UTI was making me feel like this.
I was anxious to be around people in case they found habits I had picked up weird. I was always on edge and when my symptoms were bad could be very fidgety. Even questions such as ‘why do you drink so much water’ could send me over the edge.
In May 2016, three years after my first UTI, I had an attack so bad that I was peeing pure blood. My mum got me an emergency GP appointment and she came in with me. Everyone could see that my sample was completely red yet I was told my sample was fine and there was no indication of infection. My mum was fuming.
Computer says no and IC on the horizon
I’d had enough, all hospital sent samples were negative but I was peeing blood? How was that normal? Although I was really scared about going to see a specialist, my GP finally referred me to my local hospital for further tests. I had an ultrasound before seeing the urologist and the nurse told me ‘I was too young to be having bladder problems’. I have NEVER wanted to shout at someone so much in my whole life.
The urologist was very dismissive. As the ultrasound had been negative, the next step, he said was to have a look internally via a cystoscopy. He diagnosed me with interstitial cystitis (IC) and gave me a sheet full of ‘safe food and drink’. I came out of that appointment crying and feeling like I had been ignored despite everything I told him during the consult. There was no way I was going to accept his diagnosis based on just one conversation, I KNEW antibiotics helped and knew there was another way.
P45
Employment wise it was a struggle. I was lucky in that whilst I was doing my apprenticeship, I could work from home and had flexible working arrangements in place. So many times, I would wake up at 2am in searing pain, getting no sleep and this really saved my life.
However, once I finished my apprenticeship when I was 22, I went to work for a well known corporate construction company who weren’t so accommodating. I lasted six months until it got too much; I was burnt out and stressed from trying to keep my head afloat. They said I ‘wasn’t capable’ due to my sickness record and I knew I should take some time out, find a part time job and get better.
It felt so isolated but decided to join a couple of UTI forums so I could research self-help treatments. I tried ‘herbal’ supplements such as oil of oregano and colloidal silver which I believe may have also contributed to help keep symptoms under control. I visited a Chinese herbalist, tried a few, but aside from being disgusting, I like to trust my ‘gut feeling’ and they just didn’t sit with me…
Fellow sufferers showed the way
Finally, in the summer of 2016, I joined a Facebook group dedicated to Chronic UTI and took the decision to see a specialist based in London, Professor James Malone-Lee who treated people from all over the world like me. I was so nervous before my first appointment but he couldn’t have been kinder, reassuring me that I would be fixed, this after looking at my urine sample under his microscope. Not a cystoscopy, x-ray, ultrasound or other tests in sight.
I won’t deny that initially things were really up and down. Sometimes for months, I felt like I wasn’t getting anywhere with this and doubted the treatment completely. What had I done especially as I could only see him privately and it was a lot of money However each time symptoms flared or I had an issue with the antibiotics, I would contact his clinic and he would either ask me to book an appointment to check my urine, see him in person or he would provide an email explaining why I was flaring, what we should do treatment wise and advise if I was experiencing any side effects from the medications. From the beginning I was placed on Nitrofurantoin and Hiprex, one an antibiotic specifically for UTIs and the other an antibacterial which stops the bacteria from multiplying particularly if they emerge from the infected bladder wall cells. When symptoms changed, I was then prescribed Oxytetracycline and then Doxycyline along with the Hiprex. All the time monitored so carefully through urine checks and regular appointments.
We stuck at it and gradually I noticed that symptoms started to disappear. The first symptom that subsided over a period of time and then disappeared was the agonising pain when urinating but I would say the symptom that has taken the longest to go was the awful nerve pain in my bladder and pelvis. I’ve found keeping warm and having a hot water bottle to hand helped so much. Cold weather can still be a trigger but I know now to keep warm.
Life has turned 180 degrees
Nearly three years on from that first appointment with Professor Malone-Lee, I eat what I want, drink alcohol, travel, and go running!!! My life is a complete turn-around. I now no longer constantly think about ‘what if’ I just ‘do’ without any fear! Looking at my career in construction, I am in a similar role to that of two years ago and it could not be going better. I am not only praised every day but I have worked full-time solidly for a whole year! There was a point where I never thought I would see the day and thought I would bed bound forever.
I take nothing for granted but I’m also hoping that shortly with my specialist’s guidance, I will be able to stop taking the antibiotics. I really have progressed that far with the right treatment.
I am a big believer in meditation and the range of benefits associated with it. Practising mindfulness and yoga have also helped me especially in a ‘flare period’. You must always remind yourself ‘its okay to rest’ that is how you heal. I would also like to recommend a book called ‘You can heal your life’ by Louise Hay. It is a bit spiritual but I like to look at things from all angles. I used to always be so anxious, since doing the above I am always told how calm and relaxed I am, I believe this helps the body heal.
Finally, and most importantly, you should want to get better. It’s easy to sit on Facebook groups or social media and complain. Let me tell you the sooner you stop having a ‘pity party’ and focus on the good/positive aspects of your life, the sooner you will feel better. Illness starts in the MIND first.
Challenge yourself. I wrote down goals I wanted to achieve (I didn’t date them but did them when I felt ready) including;
- A long haul flight
- 5K run
- Work full time
And so far, nearly three years into treatment I have done all of the above. You have to look at the little achievements on your journey as everyone’s’ will be different but when you can look at how far you’ve come, it’s the most encouraging thing you can do!
Pain isn’t forever, you will get better – I AM PROOF!
Find out about UK specialists in Chronic UTI