A Chronic Urinary Tract Infection Took Over My Life At 22

A Chronic Urinary Tract Infection Took Over My Life At 22

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Libby’s life came crashing down when her recurrent urinary tract infections suddenly became constant and stopped responding to treatment.  Being forced to drop out of work and university, she was no longer able to rely on doctors and knew it was up to her to find a solution.  While on university placement, a chance encounter with another chronic UTI sufferer led her to discover a unique chronic UTI treatment protocol being used successfully at a clinic in the United Kingdom.  She asked her doctor for help and within months she was responding to the new treatment.   In just over a year, she is almost cured and says she is firmly committed to seeing her treatment through to the end.

 

My regular UTIs started when I was a child and never tested positive

From an early age I have always suffered from urinary tract infections (UTIs). As a child I had about one infection a year.

At around 17 I began to get them much more frequently, about every three months. These infections always cleared up for a while with a short course of antibiotics and I continued like this for about five years.

I never had a positive test for infection in my urine. However, I was lucky that my mum had experienced the same problem in her early 20s and our family GP understood that it was in fact an infection, which would appear to clear up after a short course of antibiotics.

For about five years, I suffered with recurrent UTIs every few months. My symptoms came on very quickly when I was having a flare, and I experienced severe urethral pain, bladder spasm, frequency and extreme urethral burning.

 

My UTIs came on weekly and my usual treatment no longer worked

By the time I turned 22 my UTIs had become so recurrent that the flares were almost weekly. The short courses of antibiotics were no longer helping my symptoms.

I was about to complete my final year of a double degree in nursing/midwifery. Unfortunately, my symptoms became so severe and frequent that I had to drop out of university. I lost my casual job because my health affected my reliability and I was unable to be intimate with my partner at all. I struggled to sleep as my frequency increased so much that I would need to go to the toilet up to 10 times a night. Because activity caused me to flare, I was forced to give up horse riding, which has been my lifelong passion, and any other form of exercise. This was very difficult as I normally would work-out a few times a week and ride most days.

At this point I felt hopeless. I was too anxious to leave the house in fear that I would flare or not be close to a toilet. I wondered if I would ever lead a normal life again. I felt anxious, alone and depressed.

When I flared I would spend hours crying on the bathroom floor, paralysed by the pain, wondering if my life was worth living. When I was at my worst I clearly remember thinking I would gladly have my bladder totally removed if it meant relief from the crippling pain I was enduring day and night.

 

I was told my recurrent UTIs had developed into a bladder syndrome

While all my friends went back to university, I was housebound and had plenty of time to research.

Through my research I concluded that I most likely had interstitial cystitis (IC), an incurable bladder condition which pretty much meant a life sentence of pain and misery. I visited several GPs who refused to believe that I had a bacterial infection, even though previously my symptoms had always cleared up within 12 hours on antibiotics.

I visited my family GP who offered to refer me to a urologist. I dreaded the thought of a cystoscopy and doubted I would be listened to after my previous experience with doctors.

I did more research and tried to go down the ‘natural’ route of treatment by adopting a vegan diet, cutting out all acidic food and spending hundreds of dollars on natural supplements. This strict regime only added to my misery, caused me to lose weight that I couldn’t afford to lose and, ultimately, provided no relief from my relentless symptoms.

 

I learned about chronic UTI from a work colleague

Thankfully I recalled a conversation with a midwife, who is now a friend, from one of my midwifery placements. We had discussed our experiences with UTIs and she had briefly told me about a professor in London who heads a clinic successfully treating patients with chronic UTIs.

In desperation, I reached out to this woman through Facebook and she helped me access all the information I needed on chronic UTIs and the Professor’s treatment protocol. After reading all the information I was sure I had a chronic bacterial infection, also known as an ‘occult bladder biofilm infection’, and that this was the right treatment for me.   Armed with all the information, I went to my family GP. Thankfully my wonderful GP was totally supportive and got in contact with the English professor immediately.  Soon after I began my treatment. The protocol involves taking normal dose antibiotics that someone would have for an acute UTI, but for a prolonged period of time. Ultimately, aiming to break down the infection that had become embedded in my bladder wall.

I experienced significant relief about a week after beginning treatment. Within about three months into my treatment I was able to go back to work and start horse riding again, which was fantastic.

 

Treating my embedded UTI was not easy, but it worked

However, I found the phrase ‘two steps forward, three steps back’ very relevant throughout my treatment. I would have periods of being 70 percent symptom-free, only to flare again and feel like I was back at 40 percent improvement. This aspect of my treatment caused very bad anxiety, as with every flare I felt like I was back to square one. On top of this, even mild symptoms would trigger memories of how horrific my flares used to be. I was terrified of experiencing that type of pain and trauma again. I was also anxious about potential health problems due to long-term antibiotic use. My GP was vigilant and did blood tests regularly to ensure I did not develop any harmful side effects form the prolonged treatment. 

Thankfully, with wonderful support from my partner and family, I stuck to the treatment regime and have almost made a full recovery. Now, 13 months into treatment, I am overwhelmed with gratitude that I am 90 percent symptom-free, 90 percent of the time. I am fortunate that I have tolerated all the antibiotics with next to no side effects or other health problems. I am now able to exercise, work, be intimate with my partner and go back to study. I have my life back! I know I am still not 100 percent healed, but I am determined to stick with the treatment until I defeat this infection.

In sharing my story, I hope to reach out to other women living with this monster; have faith, there is a treatment that works and you can get your life back.

 

 

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4 Comments
  • Melissa K
    Posted at 10:01h, 01 February

    Thanks for sharing this story. It’s inspiring and I hope to hear an update about a successful treatment outcome!

  • Jen A
    Posted at 11:48h, 01 February

    Great story , and even better outcome….. Thank goodness for the Prof……There is so much we dont know about bacteria , our doctors are just so far behind…..

  • Chronic UTI Australia
    Posted at 13:29h, 01 February

    Hi Jen, thanks for your comment on Libby’s story. The Professor she refers to in her story is Professor James Malone-Lee in London, UK. Through his clinic he has seen thousands of patients (mostly women) with complex, recalcitrant UTI histories, just like Libby’s. Unfortunately, the UTI testing our doctors rely on are quite dismal and it’s reported they miss up to 50 percent of genuine infections. There is a current discussion on the British Medical Journal website focused on this very topic – although discussions about serious flaws in UTI testing don’t seem to have made it to Australia yet: http://www.bmj.com/content/359/bmj.j5766.full?ijkey=IiTCSBtWau0sm9j&keytype=ref

  • Chronic UTI Australia
    Posted at 13:37h, 01 February

    Hi Melissa, thanks for your interest in Libby’s story. Hopefully she’ll be in a position to give another update soon about her full recovery. Unfortunately, what we do know about chronic UTIs is they take a long time to resolve due to the nature of the infection. Chronic UTI researchers are right now busy developing better, more targeted treatments which will hopefully do away with the need for long-term, oral antibiotics for good. Here is information about an exciting new treatment under development in the UK: http://atocap.com/ and here is a Youtube clip that explains the potential of this treatment that goes well beyond treating Chronic UTI: https://www.youtube.com/watch?v=JPIqS-A5CQM

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