Beth’s Chronic UTI Story

Beth’s Chronic UTI Story

Reading Time: 11 minutes

At 28-years-of-age, Beth developed a simple UTI that she would go on to endure for the next 10 years.  Living a life in unbearable and debilitating pain, she was eventually diagnosed with interstitial cystitis (IC).  To help manage the symptoms from her ‘incurable’ condition, she was prescribed serious pain medication and had a Medtronic Interstim surgically fitted to her spine.  Refusing to accept this life-long sentence, and desperately wanting a baby, she gathered her strength and continued searching for answers.  After the initial step of discovering and correcting an underactive thyroid condition, in 2015 she travelled overseas to see ‘Dr Lovely’ and was properly diagnosed and treated for a chronic UTI.  Since being properly medicated, Beth has slowly regained her health and finally become a very proud, first-time mother to a healthy, gorgeous, happy baby.  Here is her story.

 

I had my first UTI at 28

In 2006, aged 28, I had just got engaged to my long term boyfriend when three days later I awoke to what felt like sharp electric pains in my back. I was living in the UK at the time, so I rang the National Health Service (NHS) helpline and they advised it was likely a urinary tract infection (UTI). I’d never had one before so had no clue what the pain was. Once I had emptied my bladder though, it was clear I had a UTI. Ouch.

My local regular GP tested my urine on site (with a dipstick test) and prescribed a short course of antibiotics. This took the edge off my symptoms, but after two weeks I still felt urgency, frequency and by now there was stabbing pain in my bladder.  I returned to the GP to be told this was normal and my bladder needed to ‘settle down’ again.

A couple of weeks later I returned again to be told it was unusual I still felt symptoms, but not to worry, as my urine now tested negative to bacteria.  This scenario repeated a few more times until I stopped asking and started Googling.  From my online reading I learned that other people had these symptoms but it was called IC (interstitial cystitis), which was untreatable, not caused by infection and definitely not a UTI. This never sat right with me as clearly mine began as a UTI that never went away. However, I took on some of the IC advice and I cut out acidic foods and used a heat mat.  This seemed to help a little.

Fortunately my work as a contractor took me into a high profile law firm in London where they had an in-house doctor. I made an appointment and was happy to find they listened to me. A sample was taken for culture, and a two week course of antibiotics was prescribed. This helped a little, but once the course had finished everything came back again. I returned to the doctor and was given a referral to a top London urologist.

A couple of weeks later I returned again to be told it was unusual I still felt symptoms, but not to worry, as my urine now tested negative to bacteria. This scenario repeated a few more times until I stopped asking and started Googling.

 

With ongoing UTI symptoms, I was now on the endless medical circuit

‘Dr Uro’ was elderly, posh and very old school. He told me straight up he thought I had chlamydia, and this was the cause of all my issues. I was a bit shocked. I didn’t see how I could have got chlamydia—both my boyfriend and I had taken STI/D tests early in our relationship and we were both committed. However, I had the test done and it was negative.

‘Dr Uro’ then suggested the thing I needed was a cystoscopy to find out what was happening. He would dilate and stretch my bladder and this would settle it down again. I agreed, as why would it be suggested if it wouldn’t help me?  And I was desperate for help as the bladder pain was getting worse and my frequent toilet trips were affecting my work and personal life.

The cystoscopy was horrific. I awoke to awful pain in my urethra and the pain on voiding was indescribable. I could barely walk. It made things much worse. The results of the procedure were that pinpoint bleeding was found and my bladder couldn’t hold much urine. However, ‘Dr Uro’ said this was ‘normal’ and I shouldn’t worry and he was confident if I returned to see him in three months, I would be much better after my bladder hydro distension had settled.

The GP at my office then thought I should see a gynaecologist, as maybe the pain was reproductively based. I felt it wasn’t because I had no variation throughout the month (although I had no monthlies with my contraceptive pill). The gynaecologist poked around inside, asked a few questions and said “I think you have IC.  You should see my urologist colleague”.

The cystoscopy was horrific. I awoke to awful pain in my urethra and the pain on voiding was indescribable. I could barely walk. It made things much worse.

 

‘Dr Uro2’ was a lovely, kind man. He did believe there was a low grade infection and he put me on a daily, very low dose of Nitrofurantoin. It didn’t help the pain which was still getting worse. He tried me with several different medications for nerve pain; Gapapentin, Pregablin, Amitripylene. None helped and most made me feel very strange or dizzy. I tried Nortripylene at night time and could sleep slightly better between toilet visits, even though it made me a bit dopey.  But the daytime pain was still no better. Strong Diclofenac helped a little. ‘Dr Uro2’ wanted to try nerve blocks. I had three. None did anything.

I was then referred to the pain clinic and ‘Dr Pain’. He prescribed me Tramadol and some mental coping techniques. This had helped the most so far. I struggled with the dopiness at first but it became easier as my body adjusted. I was still in significant pain though, and most days my pain was still about 8/10. I no longer did anything social unless it was at home.  I found eating out tricky in case the food upset my bladder.  And the worst was probably the sheer embarrassment of having ‘bladder issues’. While my friends were out drinking and socialising, I was home with water, a heat pad and, thankfully, my fiance.

 

I began to rely on highly addictive prescription pain killers to survive

By Christmas 2008 I started having a new severe pain in my chest and back. Now (unrelated to anything else going on) my gallbladder was faulty, so out it came. They gave me morphine tablets for the pain of recovery. For the first time (apart from several Emergency Department visits for pain where I’d had intravenous morphine), my bladder did not hurt. ‘Dr Pain’ finally agreed I could have Fentanyl patches. Once I found the right dose and got over the tiredness, I was so much more mobile. For months I had hardly been able to walk from pain, and often had to sit down after only a few steps doubled over.  Now I was able to walk and work fulltime again.

Being relatively young and on Fentanyl though is not recommended, and soon ‘Dr Pain’ wanted a better solution for me. As the pain nerve blocks had not worked, the next option was a nerve stimulation device (Medtronic Interstim for pain) that sat under the skin and blocked signals from the bladder to the brain. Other bladder patients had a similar device to reduce the urgency feeling, but no one had the pain version for bladder pain.  With no precedent, there had to be big discussions, meetings and committee voting to secure the funds (a huge £25,000 or $44,000AUD) from the NHS for me to have the implant. ‘Dr Pain’ was keen for me to be his first ‘victim’ and use me as a study and I think this definitely helped with my application. I had also exhausted every other option that they had offered me. Months went by but eventually they said yes. I had a trial fitted (with the leads implanted into my spine, but the battery pack was external) and saw an improvement very quickly. Shortly afterwards the internal device was fitted. I was sore but hopeful. The device could mean I’d be free of pain medication and my now-husband and I were keen to try for children.

Being relatively young and on Fentanyl though is not recommended, and soon ‘Dr Pain’ wanted a better solution for me. As the pain nerve blocks had not worked, the next option was a nerve stimulation device.

 

The results were disappointing. I had the programs on the device changed numerous times which was tiring, frustrating and often painful. I felt the wires in my spine were not in the right location compared to the trial, as I could not get the buzzing in the right spot internally. I was told repeatedly that they were in the same spot. I had several X-rays to check. However, after seven months of me complaining, they agreed to re-position the leads. This involved being awake so I could feel the buzzing and lying on my tummy as they moved the leads in my spine. It took several hours and much pain to get the right spot, but eventually it was working correctly. I cried. No, I balled my eyes out in that operating room with relief.

The device helped a lot, it did reduce my frequency and urgency, and my need to use the bathroom at night reduced from four to five times down to two, finally allowing me to get some rest.

Around this time I read the ‘The Better Bladder Book‘ by Wendy Cohen and decided to try cutting out gluten. This helped a small amount, but significant enough to keep doing it.

My personal life soon afterwards became tumultuous.  So for the next couple of years I just managed as I was with pain medication and the Interstim to block the pain signal, and altering my diet to avoid upsetting my bladder too much. Even though my pain had reduced by about 50 percent with the Interstim, I had no mental capacity to significantly reduce my pain medication and still be able to deal with the side effects.

 

I moved to Australia and my life took another turn

I moved to Australia at the end of 2012 and fortunately was treated with respect for my needs to continue my pain medication. My bladder was mostly manageable. I still needed to pee much more frequently than average, and I was always aware of some pain. I would have bad days if I was run down, and I would still be caught out by severe stabbing pain out of the blue, leaving me bent over double. But generally, I was much better.  And whilst I was still living with chronic pain, most people who knew me wouldn’t be aware of it thanks to the implant and the medication.

I remarried in 2013 and my new husband was keen for a family. I wasn’t sure if it would be possible with my medication. However, after finding a supportive and open minded obstetrician/gynaecologist, we started trying. After about 18months I started to feel extremely tired and worn out. My joints ached, and I wanted to sleep all day long. I still wasn’t pregnant, so after a few tests I found my thyroid was underactive, and I had Hashimotos disease (an autoimmune disease affecting the thyroid). I was started on Thyroxine and felt even worse. My hands became so sore I couldn’t hold an adult sized fork because it was too heavy, so I used kids’ cutlery. I was signed off work as I was unable to use a computer.  I was told that Thyroxine was what I needed and it would improve. It didn’t, but luckily having had a great deal of experience with unknowledgeable medical staff, this didn’t worry me.

I was recommended to see a local integrative doctor. He was great.  He ran more tests and found my body was not processing the medicine correctly for me. He also ran food intolerance tests as I said food greatly affected my bladder (I still wasn’t eating gluten, or anything acidic like tomatoes, vinegar etc). I was given a different thyroid medication, some vitamin B12 injections, and told to avoid dairy, eggs and a few other small things. Within a month I felt much better and returned to work.

 

I started to understand what I had was a chronic bladder infection

For the previous eighteen months or so, I had also been following a Facebook group with interest. It related to bladder issues like mine, and the understanding that bladder conditions like IC were caused by a bacterial infection that could not be detected by standard testing. It was based in the UK and people were starting to have positive results seeing a doctor in London who used antibiotics in a high dose for a long term course. I finally booked in to see him, and in September 2015 off I went to London. My previous experience of London bladder specialists was not great, so I was wary and prepared to be disappointed.

‘Dr Lovely’ was just that. He listened, he understood, he empathised. He didn’t tell me it was in my head, or it was just remembered nerve pain, or that it was ‘women’s problems’. He was enthusiastic, positive and hopeful. He prodded my bladder and kidneys (I often had referred kidney pain too) and said ‘oh you poor thing’. After asking me lots of questions about my symptoms, looking at my urine sample under a microscope and the physical examination, he diagnosed me with a chronic UTI.  He prescribed me Keflex at a high dose for the foreseeable future. I have been extremely lucky that this antibiotic suited me straight away. I had no side effects—except for the fact the weight and pain in my bladder began to lift within a few weeks. This, combined with my thyroid medication, meant I was feeling better than I had in years and years. I had some energy again, I looked healthier and I lost weight. I started to exercise on my good days, and it felt amazing to have some youth back again.

For the previous eighteen months or so, I had also been following a Facebook group with interest. It related to bladder issues like mine, and the understanding that bladder conditions like IC were caused by a bacterial infection that could not be detected by standard testing.

 

Wonderful newsI was getting better and I was pregnant!

In January 2016 I found out I was pregnant! Ironically, we had just returned from the fertility clinic and I was going to fill out my prescriptions for hormones etc for my next cycle. I am so proud and thankful to have finally become a mum.  And to be able to enjoy it so much more now I am feeling so much better. During my pregnancy, I was encouraged to reduce my medications, especially the Fentanyl as it is not safe for breastfeeding, and I was ‘pain patch-free’ for the birth of my baby. Today I am virtually pain-free and still on the antibiotic protocol—it’s now been two years.  Whilst I cannot stop them just yet (I have trialled it, at ‘Dr Lovely’s’ request, and some symptoms returned) I am very hopeful I will be able to in the near future. There are still foods that I cannot eat without pain (wheat, dairy, tomato soup), but overall my diet is much less restricted.  And I no longer take any regular pain medication at all—something which I never thought was possible.

I tried so many different options to try and regain some mobility and normality back into my life.  It was only once I was properly diagnosed by a highly knowledgeable specialist (‘Dr Lovely’) that I had genuine potential to not only feel better, but actually start to heal my body.

 

Update (January 2019)

After two and half years of treatment, Beth reports she is completely off antibiotics and pain killers and remains symptom-free. She will follow the instructions from her specialist and re-start treatment immediate if her symptoms return.

Beth’s Tips

  • The best advice I could possibly give is to be your own health advocate. No one knows how you are feeling except you.
  • So do lots of research into your issues, join groups, read, read and read some more.
  • Good medical support can be very hard to find. You may need to travel. And yes, travel when you’re not well is very hard (always tell the airline staff, they are ALWAYS supportive if you are polite and ask for help), but no one is going to help you if you don’t seek it.
  • Trust your gut, if you don’t like the treatment suggested or advice given, you are free to ignore it.
  • Finding a good doctor is a bit like finding your romantic partner, it can take a while to get there, but it’s completely worth it when you do.

 

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2 Comments
  • Ashlep
    Posted at 15:24h, 17 April

    What doctor did you see in London? I’ve tried several doctors over the last 6 years in different countries and am desperate.

  • Chronic UTI Australia
    Posted at 17:44h, 17 April

    Hello Ashlep, Beth saw Professor James Malone-Lee in London, UK. If you’re not in the UK, he sees international patients in his private clinic. You can find contact details on this page (the second to last dot point): https://www.chronicutiaustralia.org.au/chronic-uti/what-to-do-if-you-think-you-have-a-chronic-uti/

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