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Patient stories

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

Pen, an animal behaviour psychologist was told she was just quite anxious

“I got ill six years ago. I knew the symptoms of cystitis. I’d had bladder infections before so I went to the chemist to buy the over-the-counter remedies that had cleared it up in the past.

But four days later things were worse. I was sitting in the kitchen and I started feeling very ill indeed. I thought I was going to be sick. I was very shaky and I was in a lot of pain. I said to my husband: ‘I have to go to hospital’.

At the hospital they said, ‘Yes you’ve got a urinary tract infection. Have some antibiotics for the weekend.’ It got rid of the stinging on urination but there was this severe abdominal pain and the feeling that I needed to wee, all the time, really desperately. I could have sat on the loo all day, 24 hours.

My next port of call was my GP where I was given another three-day course of antibiotics. They weren’t that worried. They just gave me antibiotics and sent me on my way. They did a dipstick test and a culture and couldn’t find anything even at that early stage.

I can’t remember how many times I went to the doctor over the next six months but the pain just got worse and worse. I had an ultrasound scan and a cystoscopy. They didn’t do more urine cultures. The cystoscopy showed nothing. They did urodynamics where you have to drink loads and loads and then hang on and wait and then wee into a special loo. It was hideous but it didn’t show anything.

They started putting on my notes that I was an anxious woman and asking me questions like, ‘How’s your marriage?’. The GP was dismissing me and saying it was in my head. Eventually they sent me to a psychiatrist. He basically said: ‘You’re quite anxious. You’ve regressed back to being a baby’.

That was terrifying to hear. I came out and I banged my head on the steering wheel of the car. My husband was with me and I told him, ‘This is the end. I can’t cope any more’. Being told it’s in your head when you’re in so much pain is incredibly scary.

Painkillers weren’t working. The doctor gave me Valium one weekend. They said, ‘You’re just anxious’. What I felt that weekend was a bit floaty but still in a lot of pain.

I was struggling to work. I was all right in public but hysterical at home. My husband was supportive but he got very tired of talking about it. Finally through an internet chat room I found out about the LUTS Clinic and started treatment there.

Relief was not immediate but after eight months I woke up one morning and I thought, ‘Oh, I’m not in pain which is weird. And I remember being in my car and driving to the end of the road and feeling, wow, the pain had not kicked in. It went from being agonising to not there. It was a good day! I’ve never been in that amount of pain since.

Two years later, I still take an antibiotic and attend the clinic. I’m not back to normal yet. I have a UTI that is controlled by antibiotics but in terms of bladder it’s pretty good.”