My bladder problems started in 2013 shortly after I was catheterised following a partial bladder resection to remove a nodule of endometriosis. I’d suffered endometriosis since coming off the contraceptive pill to start a family. The pill had obviously been masking my symptoms and it was at a severe level resulting in the need to have surgery when I was 25. As part of the procedure and during recovery, I was catheterised for a month and shortly after the catheter was removed, I began experiencing problems with my bladder. The symptoms crept up slowly and intermittently to begin with and then I had sex and didn’t wee afterwards and BOOM-the next morning it felt like a full on UTI.
Prior to this, I had not suffered from recurrent UTIs, only having the odd attack which settled very quickly either with a short course of abs or over the counter self-help treatments.
Laboratory test says no
I went to the GP and nothing showed up when he used a dipstick to check my urine but because of my recent surgery he sent the first sample off to the laboratory. This continued for months. I submitted various urine samples to my GP but the standard NHS test kept coming back as negative. I was certain I had a bladder infection and I was really upset about these continuous negative urine test results. The bladder pain was slow to progress in the beginning, but gradually it became unbearable and I was in daily pain along with frequency. At the end of urination it would burn and then I would be left with an aching and painful bladder. My frequency was about 10-15 times a day. If I stood for too long it would feel like the bones around my bladder/vagina were burning and heavy.
The symptoms became so bad that one day I took myself off to A&E where bacteria did show up, along with ‘contamination’. I later learnt that this means more than one bug is cultured but the NHS deem it cross-contamination and thus because they cannot grow one single pure bacteria, the sample is considered a fail and no treatment can be offered. Unbeknown to me, this was going to be the cause of a very long battle with an embedded bladder infection, undetectable by standard NHS urine testing.
After the A&E visit, I was prescribed the usual short courses of antibiotics, which helped settle things to around 80% in terms of bladder pain and frequency but as soon as I finished each course, my symptoms returned full force. I ended up with C-Diff because of all the short courses of antibiotics.
The walls close in
I had to stop work because I was unfit to function. I was incredibly depressed because no doctor was able to find what was wrong with me and I became more stressed about whether I would every get better and be able to return to work and live a normal life.
I couldn’t socialise with friends or have a normal sex life with my partner because of the pain and we desperately wanted to start a family. I lost a lot of weight because of how anxious and depressed I was. I was up a couple of times in the night but generally lying down seemed to help my symptoms. I would use Amitriptyline for the pain at night, I found it was the only helpful pain medication but it didn’t completely take the pain away and I had to keep increasing the dose. My GP had trialled me on various different painkillers such as co-dydramol, gabapentin, pregabalin and codeine but they either didn’t work or just made me feel nauseous. It was Amitriptyline or nothing.
My GP had no other option but to refer me to a urologist on the NHS. This experience turned out to be absolutely hopeless! The urologist put a camera in my bladder (known as a cystoscopy) and because nothing was visible he simply told me it was all in my head and down to the stress “of trying for a baby”. I should add that on top of this, the cystoscopy was very painful and traumatic! I came out of hospital feeling like I had been totally dismissed by the medical profession.
Left on my own in severe daily pain, I became suicidal. I tried numerous other therapies and remedies such as acupuncture, d-mannose, changing my diet, etc but nothing worked. I was categorised by my GP and urologist as having ‘Painful Bladder Syndrome’ or ‘Interstitial Cystitis’!
Research, research, research and research a diagnosis
It was only when I researched for days on end via the internet and using Facebook support groups, that I came across Dr Catriona Anderson of the Focus Medical clinic in Staffordshire. I contacted her and sent a urine sample via post because of the distance between us. She organised a broth culture and when she got the results back, my sample was found to have E.coli and Enterococcus! I was SO relieved to finally have an infection confirmed, and I felt like I wasn’t going crazy after all! This automatically helped with my anxiety and depression. I felt that there was light at the end of the tunnel.
I started on high dose antibiotics and within two weeks felt soooo much better. Over the next few months I would still have flares and bad spells but for the most part I felt on the right track. Each time I flared, I would contact her and she would either change the antibiotics or advise on how to manage the flares.
Unfortunately I still wasn’t able to go back to work. The cost of treatment privately was really difficult and I had read about a doctor much closer to me and decided to get a second opinion. The NHS clinic of Professor James Malone-Lee who is based in London found the same bugs in his sediment culture as Dr Anderson had done in her broth culture – e-coli and enterococcus.
He assured me that he would not give up on me, and that we would get a hold of this infection, but that it would take ‘dogged persistence’ and the trialling of different combinations of antibiotics for possibly quite some time. I appreciated his honesty.
Once I started on the antibiotics, along with the amitriptyline that I had continued to take, my pain started to subside. Over the course of the last three years with the Professor, I was incredibly well looked after! Both he and his team were a godsend to me! Gradually over time my white blood cells and epithelial cells fluctuated, but slowly they came down. I had very few flare ups, and each time one happened, the Professor adjusted my antibiotics and the flare was brought under control again. The amitriptyline had no effect without the antibiotics, but together, I was pain and frequency free 98% of the time.
As the infection started to go, I noticed subtle changes such as not needing to go to the toilet as frequent, or managing to have sex without flaring, I could eat what I liked and managed to reduce my pain meds without the pain returning.
Motherhood and my life back
In total I was on antibiotics for approx 2 ½ years, starting in 2014 (I think!). Now I can live my life again, go to work, socialise, exercise, make love, and most importantly – I am now a mother to a wonderful son.
No other doctor would have touched me with a 10ft bargepole during my pregnancy and diagnosed with an infection….but the Professor did. He kept a very close eye on my pregnancy with more frequent check-ups and provided me with pregnancy friendly antibiotics. He has been my saviour and for that I am eternally grateful to him and his wonderful team! I also slowly came down from 40mg to 15mg of Amitriptyline during my pregnancy. I never thought that this would be possible! When my infection was at its worst, I was taking 110mg Amitriptyline per night and it still wasn’t touching the pain.
I would also like to mention that, at no point under the care of Professor Malone-Lee have I contracted C-Diff. I had hardly any side effects, and if I did, then the Professor would straight away adjust the medication regime. Thrush was the only issue on antibiotics but I kept this in check with Multigyn Actigel which you can buy at Boots or Superdrug.
I have now been off antibiotics and pain meds for over two years. I have returned to work as a counsellor on a part-time basis so I can spend time with my little one. I don’t doubt that I may suffer from bouts of cystitis in the future but thank goodness I found two specialists that were able to help me because they understood my chronic UTI after months and months of hopeless NHS testing and seeing specialists who just dismissed what I was saying to them about my symptoms because the tests said no infection. I now know what to do and who to speak to as soon as any symptoms flare up.
Honestly I would finish by saying to people going through all of this; freaking out doesn’t help (easier said than done, I know!). You have to accept that this is going to be with you for a while as it is not easy to get rid of but it is possible! Look after yourself, rest as much as you can, and try to notice to small changes (they happen so gradually that you might miss them), they are the indicators that you are getting better.
Find out about UK specialists in chronic UTI
Find out where to get a urine sample tested