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Patient stories

Men, women and children get UTIs. Sufferers of chronic UTI share their stories

Lara had simple UTIs before but when she got ill five years ago something felt different

“My illness started pretty much out of the blue. I was 25 and working in customer service for a cinema chain. I had had UTIs in the past which cleared up relatively easy. I started with the familiar symptoms, however I knew something was different this time.

I had a cystoscopy and hydrodistension which didn’t help at all. The diagnosis I was given from the cystoscopy was interstitial cystitis. I underwent several courses of Cystistat bladder instillations which didn’t help. My GP was not supportive at all when symptoms first started for me.

I’ve now been in treatment at the LUTS Clinic in north London for a year and I’ve seen a huge change in my symptoms, more than ever since starting with this infection. I have been on an antibiotic and a urinary disinfectant pretty much the whole year.

I can honestly say that my symptoms have reduced greatly. I’m about 90 per cent better compared to when this all started. My main symptoms were burning/stinging during and after weeing and a horrible feeling of a full bladder all the time. I also had some leaking that started a year and a half ago.

Once I was on antibiotics, my symptoms would reduce for periods of time. I was able to then identify my triggers which I found out to be dehydration, waiting too long to pee and sex of any kind – including just orgasm alone without actual intercourse.

I still keep myself hydrated because I do find that if I don’t then my wee will get concentrated and I will get a few twinges but they don’t seem to progress into a flare. I used to have flares that would last for months. The last real flare I had over six months ago lasted 48 hours. This is truly AMAZING for me!

I still have some frequency but I can tolerate this. I think I’ve always probably had to go to the toilet more than most people.

I’m also, dare I say it, able to have sex again. If at any point I feel uncomfortable then we stop but a year ago I wouldn’t even be able to dream about getting this far! I’m still super careful about it though, I wash before and pretty much straight after, wee straight after, drink plenty of water and double up on antibiotics for 48 hours afterwards but I’m more than happy to do all of this.

I believe that there is hope for all of us. Stay strong and never give up!”