04 Mar Kyla’s Chronic UTI StoryReading Time: 6 minutes
This is my story…
Not many people know that I have suffered from a chronic illness (chronic urinary tract infection/embedded UTI) that is not recognised by the NHS. My family only know the extent of how ill I was and how badly it has affected my life. I was at rock bottom and it has taken its toll on my mental health. This chronic illness affected every part of my life; it controlled me, I nearly couldn’t carry on. It’s time I shared my story for others that suffer in silence.
My UTIs were so bad I’d end up at A&E in the middle of the night
It all started back in my late teens when I was suffering with UTIs on a regularly basis. By my early 20s it was unbearable. My GP no longer knew what to do with me; the short course antibiotics wouldn’t work, and my urine tests were coming back clear. Then I would be back with another infection a week later.
Sex was the main cause for this coming to a head for me. The burning and urgency completely took over my body. I would feel like I was suffering with flu, fevers, aching muscles, sweating—it was horrible. So many times I ended up in A&E in the middle of the night as it was unbearable. I once had such a bad kidney infection from an UTI that was not treated properly. I ended up being blue lighted to the hospital from the doctors’ as they thought I had appendicitis!
The impact on my life is unrepairable. I missed so much of my life, going out with friends, having fun doing what young single girls do! I spent so much time in bed, struggling to get through the normal day activities. My life was put on hold. I am so surprised that I never lost a job with the amount of time I missed. Apart from one employer, all of them have been very understanding and given me the time I needed.
My GP no longer knew what to do with me; the short course antibiotics wouldn’t work, and my urine tests were coming back clear. Then I would be back with another infection a week later.
Nobody and nothing helped so I was discharged back to my GP
The doctors didn’t know what was wrong with me so referred me to a urologist. I had so many trips to A&E, scans, investigations, a cystoscopy and had stents put it. This procedure was to put three rings in my urethra to dilate it as I was advised I needed this to stop the bacteria building up around the entrance. This was probably one of the worst things that has happened to me during this illness, it made me so ill. The burning was just so consuming! Nothing helped. I was discharged back to my GP as there was nothing more the urologist could do for me.
I was lost… how could I live my life like this?! Then I met a GP who said there was a specialist in chronic UTIs/embedded UTIs who happened to work upstairs in my doctors’ surgery. He was my last option. The specialist was Professor Malone Lee who was head of the Whittington Hospital LUTS Clinic (now with the Chronic UTI Clinic in Harley Street, London).
The first appointment I had with him he looked me straight in the eye and promised he would get me better. It was finally like someone was listening to me and believed that I was as ill as I was saying. I wasn’t making it up and it wasn’t in my head. He explained to me that the years of having repeat short courses of antibiotics hadn’t cleared up all the bacteria in my bladder and the bacteria had embedded in my bladder lining and that was why I was constantly ill. My bladder would shed and create a flare. I never thought I would ever be pain free or live a normal life again. I was sick of hearing… “It’s only cystitis, take some cranberry”. My life was hell! Prof put me on long-term, full dose antibiotics which is frowned upon with most other health professionals when treating UTIs. The long-term antibiotics are necessary to get rid of the embedded bacteria and prevent any new bacteria forming.
It was finally like someone was listening to me and believed that I was as ill as I was saying. I wasn’t making it up and it wasn’t in my head.
A doctor prescribed a treatment that helpled my chronic UTI at last
It’s been a long, bumpy and experimental journey. I did get some relief quite early on, but I would be on an antibiotic for a while, start doing well, then I would have a flare. We would try a different combination and that would work, and it would happen again. This is normal though, but it was a bit of a vicious cycle for me. I think at my worst I was on 12 tablets a day. I would also have a urine check, be symptom free and my cell counts were high. This was usually thrush, but at times I never had symptoms for thrush.
Urgency was one of the first symptoms to go first, but I had constant stinging which lingered for years and years. I only got relief from this once I had removed Hiprex and stopped taking it at night, I had been on this for years prior to coming off it.
With the bumpy journey with constant setbacks, I never thought I was going to get better—but I did. I stuck with it and I trusted the process and I am so glad I never gave up.
It has been a long journey but I am now reaching the end of my treatment
It’s 10 years now [10 years since it started and seven years of treatment] and I can finally say I’m on the final leg of this journey and Prof kept to his promise. I can live a normal life now, I’m on a trial off antibiotics for eight weeks. So far it’s been ok, I have had a few days when I have needed to take an antibiotic but I am not disappointed by that. I know how to manage my infection and get on top of it before it takes over. I have had a few mornings when passing urine has been stinging. This has been my symptom that has lingered the longest and always pops up. My triggers tend to be the cold, sex, drinking too much alcohol, stress and exercise. I might never be completely free from my chronic UTI but I can manage it and I am ok with that. Prof and his team saved my life and I will forever be grateful. If anyone is suffering and they want someone to talk to, please reach out to me.
My tips for people starting/progressing through long-term antibiotic treatment:
- Be patient.
- Don’t expect miracles overnight.
- Trust the process.
- Don’t compare your journey to someone else’s—what works for one person, won’t work for another.
- Use other things alongside your antibiotics, here are some of the weird and wonderful things I have tried that given me some relief:
- Hot baths
- High concentrated cranberry extract
- Bi-carbonate soda
- Hot water and lemon
- Garlic capsules.