Do not lose heart and keep going. It is such a slow and gradual process but you will improve –

My story is probably quite similar to many in that I suffered occasional UTIs every few years in my late teens and twenties. They were fairly easy to treat, responding well to antibiotics and were never recurrent. However, after the births of my two children, both of which were complicated and required strong antibiotics to treat post-partum infection, I experienced UTIs which were much more tricky to shift, needing a few changes of antibiotic before they resolved.  Additionally, I was always aware that only about 1 in 3 of my infections grew anything when sample sent off – they almost always came back as mixed growth or contaminated even though I knew it could not be.

The arrival of my son and my chronic UTI

My chronic UTI began out of the blue about two years after my son was born. Symptoms came on during the night and flared up incredibly fast. Initial antibiotic treatment didn’t seem to touch it, and even when I changed antibiotic a few times, nothing seemed to be working. Even a long course of cephalexin (for a month) didn’t completely eradicate the infection and as soon as I stopped antibiotics it flared up again. I was even admitted for IV antibiotics because the doctors were concerned I might be developing sepsis. Although these gave me 48 hours relief, within 48 hours of stopping the IV, again symptoms returned.

At this point the fact I seemed unable to get a positive culture for the infection became significant and doctors started to say it ‘couldn’t’ be infection even though up to that point they had agreed it had to be. I had a cystoscopy – which revealed nothing. I was discharged without any further treatment and told I had an incurable condition and to ‘try to get on with my life and not obsess about my bladder.’ I had terrible burning on urination- cripplingly painful and relentless. As the infection continued untreated, I began to develop bladder pain too, and shooting urethral pains after peeing. I was also incredibly sensitive to certain foods and drinks – coffee had me in terrible discomfort within about 20 minutes and anything citrus or containing tomatoes or spice was out of the question. I ended up eating bland food and drinking only water. I could not work or look after my children and I did not know what to do.

At this stage I was prescribed several different kinds of pain relief but none seemed to work. I was also pressured into taking some medication for overactive bladder even though I didn’t think I had OAB but this gave me a serious allergic reaction and landed me back in hospital.

I thought my life was over as I couldn’t do anything and the pain was horrendous, this whilst struggling to raise my family and trying to work.

Research led me to a specialist in chronic UTI

I finally, after much research, was able to get a referral to Professor James Malone-Lee and I started treatment with high-dose, long-term antibiotics.

There were times in my treatment when those dark feelings returned – the worst time being when thinking things were getting better and perhaps I might be near to ending treatment, suddenly things got worse and I had to add a second antibiotic for a breakthrough infection. This then triggered the worst flare of the whole treatment which was tough. But it turned out that with this one, I turned the corner – ten days later I realised my flow had gone back to normal. I had had poor urine flow for so long, I didn’t even realise it wasn’t  normal and from there things just gradually improved.  Being able to enjoy a coffee without consequences meant so much.

I’m finally enjoying life – after nearly two years of the right treatment

In total treatment lasted around 20 months and I am now off all medications and able to live life normally, eat and drink what I want.

So do not lose heart and keep going – it is such a slow and gradual process but you will improve. I wondered if I would ever be able to live normally again and eat and drink what I want and so many times I tried to reintroduce things only to find it still triggered a flare. But after 18 months suddenly I found I could eat or drink those things – and it was (and is) wonderful.

  • Keep the faith and do not despair – it is a long haul.
  • Never say never – there are so many things I thought I would never be able to do, eat or drink again – but gradually as things improved I was able to add them back into my life.
  • Many times during my treatment I thought that perhaps the treatment was wrong and the other doctors (who had told me I had an incurable lifelong condition) were right.
  • Share with friends and family what you are going through – there is no shame in talking about how a UTI has affected your life. You would be surprised how many are suffering

Find out about UK specialists in chronic UTI

Find out why the tests don’t work

Read more about Professor James Malone-Lee

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