18 months on and I am a very different person, I’m not yet 100% but I am 100% better than I was –

I’m sure I’m very like many others who have suffered from recurrent poorly treated or untreated UTI’s over many years leading to a chronic embedded infection.

Life with cystitis – from childhood to adulthood

When I was 13 I suffered from my first bout of cystitis, I was diagnosed, given antibiotics and sent on my way. From the age of 13 to 22, I had UTI symptoms every month or so, burning, urgency and frequency. If something showed up on the dipstick I’d get a course of antibiotics and if it didn’t I’d be told to drink cranberry juice and avoid acidic food and drink.

In my mid twenties my symptoms changed to just have discomfort, frequency and urgency, no burning and I was avoiding sex at all costs. I decided to try and sort it out altogether so I spoke to the doctors, they diagnosed me with honeymoon cystitis and prescribed prophylactic trimethoprim a very low dose to be taken each time after sex. This worked for a while, I’d still get pain, frequency and urgency every time I had sex but these would fade after about a 7-10 days each time.

A change of doctors led to my new practice refusing to prescribe prophylactic antibiotics, I had to prove each time I was ill that I had a UTI but the tests never showed a UTI. Over the next few years I had UTI symptoms every time I had sex but my doctors wouldn’t believe that it was caused by sex and said it must be a coincidence! I was left being told it was all in my head, no professional would believe me or listen to what I had to say, even though I had been suffering with this for many, many years and knew my own body. At this point, I had lost all hope, by avoiding sex I wasn’t ill unless I exercised, so I stopped that too and haven’t drunk wine for around 25 years. This all affected my mental health and wellbeing, I just wanted to be “normal”.

The dipsticks and urine analysis said no infection thus no referral to see a specialist

I then met my husband and everything was great except, yep you guessed it sex. We went for years with me avoiding it, leading to the both of us being frustrated and eventually I went back to the doctors to try and resolve it. Again, I was told unless a UTI showed up on the dipstick they wouldn’t treat me or refer me to a urologist. To be honest at that point I just gave up, I had to accept that if I wanted to be in a loving relationship, I would have to be ill for 7-10 days each time after sex, it didn’t really make it very appealing.

Around two and a half years ago when I was in my mid-forties, I got the same old feelings after sex, namely urgency, frequency and discomfort. I went to the doctors, no infection showing, they sent it off to the lab, no infection showing and so would not give me antibiotics. This went on for weeks with the doctors refusing treatment, I remember sitting in the doctor’s office sobbing and begging them to take notice of my symptoms not their test results but they wouldn’t. By this time I had constant 24/7 feelings of urgency and frequency I couldn’t concentrate on anything nor sit down, go in a car or go out I was at absolute rock bottom and felt life wasn’t worth living anymore. It was one of the most desperate, isolating experiences of my life.

Guess what – IC when finally in front of someone

I went back to the doctors and asked to be referred privately to a specialist and they agreed to refer me to a urologist, they wouldn’t refer on the NHS. I met privately with the urologist, he prescribed a two week course of antibiotics and I saw a very slight improvement but I still had constant UTI symptoms, other research suggested that antihistamines could help and so I started taking them and saw a tiny impact on my symptoms. I went back to the urologist and he felt that the antibiotics should have worked after a two week course and so didn’t believe it was an infection. At that point, he said I needed cystoscopy to check my bladder. I was terrified but agreed to it as I couldn’t see any other option and was desperate to stop these awful all consuming feelings. After my cystoscopy, I was told that everything was normal and he diagnosed me with painful bladder syndrome (PBS/IC). He prescribed me 10mg of amitriptyline, I went back after a couple of weeks with a very small improvement, that convinced him that I had PBS and I was told I had to learn to live with the symptoms and continue to take amitriptyline.

Thank goodness for my own research

In the meantime I had been doing my own research to find out how people learn to live with this awful condition and came across information on Professor Malone-Lee. It all made sense to me, all this time I had been convinced that I had an untreated UTI as I know my own body, but no one else would believe me, finding this information was a total turning point.

At my first appointment around 18 months ago, after lots of questions, he looked at my urine under the microscope and declared “you have a rip-roaring infection which I guarantee you have had for more than two years”. He was the first professional that believed me, didn’t tell me it was in my head and told me he would cure me. I was in tears and had some hope that at last, I could be cured.

I’m 100% better from when I first started treatment with a cUTI specialist

18 months on and I am a very different person, I’m not yet 100% but I am 100% better than I was when I first met Prof. I went from having symptoms 24/7, 365 days a year to no longer having daily or even weekly symptoms now, I have very occasional flares and sex is still an issue but the problems last about five days now, so they are much improved.

One thing that has really helped me during treatment is a traffic light system for how I feel:

  • Red = can’t live with the symptoms
  • Amber = if I had to I could live with the symptoms
  • Green = normal and the majority of my days are now green days

I am very lucky that throughout this whole period my husband has been so very supportive, without him I wouldn’t be where I am today, being able to talk things through is a great help.

I am also so grateful for the Facebook support groups set up specifically for those with chronic UTI. Talking through things with people that really understand how you feel has been a lifeline. This illness makes you feel totally isolated and withdrawn so having a group of people who know exactly how you feel is important, you can call on their knowledge of symptoms and get reassurance that you are on the right path.

Finally, I would say don’t judge yourself against others progress, it really is an individual long term approach but you will see small improvements over time.

Find out about UK specialists in chronic UTI

Read more about Professor James Malone-Lee

Where to get support

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