01 Sep Coby’s chronic UTI Story
Coby was familiar with having the occasional acute UTI, just like many of her female friends. She started to worry though when her recurrent UTIs increased in frequency. Just weeks after completing a prophylactic course of antibiotics, she developed a serious kidney infection. Reluctant to be stuck in a never ending cycle of pain and back-to-back short course antibiotics, she was determined to find a different approach to stop her infections. When her urologist mentioned other patients reported good results with D-mannose, she decided to give it a try. Within six months her recurrent UTIs were gone. Almost seven years on, she feels confident and empowered that the treatment she stumbled upon has broken her recurrent UTI cycle for good. She realises not everyone with recurrent and chronic UTI has the same success with D-mannose, but she wants to reach as many people as she can in the hope it works for others as well as it has worked for her. You can read more about Coby’s experience with D-mannose here, along with a link to her information website.
Occasional UTIs turned into frequent, recurrent UTIs when I was in my 20s
As many people reading this would know, chronic urinary tract infections (UTIs) can be very debilitating. While many people are aware of the physical symptoms a UTI can induce, the real emotional burden must be experienced to be understood.
I had the odd UTI here and there during my early 20s. But later on, around 2011, I found myself falling ill with an infection almost every three months. It would start with a niggle; that slight but distinct discomfort you can’t ignore. Then, as the day progressed, it would too, and I would find myself needing to go to the bathroom more often, with a greater sense of urgency, and feel a more severe stinging sensation each time.
I found the time between first noticing symptoms and being able to treat the infection very anxiety-inducing. Often, in those initial stages, I doubted the likelihood that I was experiencing yet another UTI, so would mentally write-off the early signs as a case of hypersensitivity or paranoia. The symptoms would intensify, confirming my suspicions of a UTI, and by then, the infection had taken hold. Living in a capital city meant there was often a significant wait time before I was able to get in to see a doctor. So, by the time I got an appointment with the GP, I would be in quite a lot of pain, feeling very fatigued, and sometimes even passing blood in my urine.
For the first few infections I was prescribed Trimethoprim: a common antibiotic used to treat UTIs. I found it worked well to relieve symptoms and rid the UTI within about three days. However, upon my third visit in the same year, the doctor advised it might be best to take a different antibiotic, in case my body started to develop a resistance and respond ineffectively to the E. coli bacteria. So, the next time I was prescribed Keflex—a brand of cephalexin. This particular strain caused me to feel very tired, and I also developed thrush.
I was determined to find out why I was experiencing recurrent acute UTIs
It was around this time that I began to feel quite worried about my health. I grew increasingly concerned that I may never rid of these constant infections. I felt like a mouse on a wheel, frantically trying to keep up without losing my footing, becoming exhausted in the process, with no clear end in sight.
Rather than continually taking different versions of antibiotics, I was determined to understand why I was prone to getting these infections in the first place and why I was having such trouble kicking them for good. I didn’t like that my GP was always quick to prescribe a treatment without considering or investigating the cause.
Fed up, I sought the help of a different doctor at a different medical practice. This next GP suspected I might have ureaplasma. Ureaplasma is naturally occurring in the body and does not cause issues if it is in balance with other bacteria. A healthy immune system can keep it in check, preventing it from causing an infection. However, if the ureaplasma concentration increases, it can cause symptoms much like that of a UTI. Ureaplasma only responds to certain antibiotics, and so, once again, I was prescribed a different drug. It bothered me that I was on yet another round of medicine, but I hoped this time around might yield better results.
Just a few months afterwards, I became sick with another UTI, indicating that ureaplasma was not the source of my bladder problems. By this stage, I’d experienced more than a year of persistent infections and wasn’t any closer to finding a long-lasting solution. I was mentally, emotionally and physically run down. I felt defeated and nervous about the prospect of a life riddled with UTIs.
I grew increasingly concerned that I may never rid of these constant infections. I felt like a mouse on a wheel, frantically trying to keep up without losing my footing, becoming exhausted in the process, with no clear end in sight.
I started doing everything I could to try and keep the infections at bay. I asked other females about their UTI experiences, tried acupuncture, read scholarly articles about recurrent UTIs and their probable causes. I began taking various supplements including probiotics, cranberry supplements, vitamin C tablets, even daily teaspoons of raw garlic.
I was obsessively monitoring my wellbeing; noting any signs of an impending infection. I think it’s fair to say it started to consume me, and my relationship too. I was always worried about things ‘flaring up’ and felt uneasy when we travelled a significant distance from home, knowing I was not within easy reach of a GP—and the antibiotics on which I had now come to rely.
The next time I experienced an infection, I tried another doctor. She suggested I was prone to recurrent UTIs because my immunity was so low. She decided my body needed a decent break from an infection if it was to have any chance at fighting off stubborn bacteria. She prescribed me a six-month course of low-dose antibiotics. The drug was nitrofurantoin; the brand name was Macrodantin. I filled the script and began taking them every day. Much to my surprise, I reached six months without a single UTI. It was a real feat, worthy of celebration.
Weeks after completing prophylactic antibiotics I developed a serious kidney infection
However, you can’t stay on antibiotics forever. After the recommended six months, I came off the tablets and within a matter of a fortnight, I noticed some discomfort when I urinated. I remember being in a state of panic at the thought of an infection returning. I guzzled litres of water, took some cranberry tablets, even a Hiprex tablet. Things did not improve. The next day I went to the doctor and, much to my upset, I was confirmed sick with a UTI and prescribed a five-day course of full-strength antibiotics.
That weekend I travelled interstate for an event. When I got home on a Sunday night, I didn’t feel right. I had no appetite, so skipped dinner and went to bed early, feeling slightly nauseous and flushed in my cheeks. My boyfriend woke in the middle of the night to the sound of me vomiting in our en suite. He says upon seeing me, it was immediately apparent that I was very sick. I was pale and shivering, clutching at my lower back. He attempted to put an ice pack there, but I screamed out in pain—the cold sensation felt unbearably intense against my burning hot skin. Worried, he drove me straight to the emergency department of our local hospital. After running a few tests, the staff identified I had pyelonephritis: a severe kidney infection. It seems the UTI I was treating had worsened while I’d been away and it had travelled further up my urinary tract until it was housed in my kidneys.
I was admitted to hospital for three days and given intravenous antibiotics. The infection finally cleared, although the nephrologist warned me I now had some renal scarring. He referred me to a urologist for further investigation to try and uncover why I was suffering from repeat UTIs.
After running a few tests, the staff identified I had pyelonephritis: a severe kidney infection. It seems the UTI I was treating had worsened while I'd been away and it had travelled further up my urinary tract until it was housed in my kidneys.
My doctor suggested there was some merit in trying D-mannose
In April 2013, I saw a urologist for the first time. He ran a series of tests, including a cystoscopy to check if I had interstitial cystitis (I didn’t). When no cause could be identified, he concluded I was unfortunately just prone to recurrent acute UTIs. Part of me was relieved to learn it was nothing sinister, but another part of me felt unexpectedly disappointed. I guess I had almost hoped for a diagnosis of some kind so I could start taking more definitive and permanent action towards these awful infections. I got quite emotional during the appointment, conveying to the urologist my frustration, desperation and overwhelm at having suffered for more than two years now.
He said he did have one more suggestion, as long as I understood that technically it was not yet considered an evidence-based form of treatment for UTIs in Australia. It was called D-mannose. He explained to me that it was a simple sugar with unique properties which allowed it to bind with E. coli bacteria—the leading cause of common UTIs. Case studies and early-stage clinical trials in the USA and Europe were revealing promising results, with chronic UTI sufferers experiencing a reduction in infections and sometimes, they were cleared altogether (you can read some related studies here, here and here). He let me know it was not something he was prescribing, merely sharing. And given it was not approved for retail in Australia, I would need to buy it online and take it at my own risk.
As any fellow sufferer would understand, I was desperate to be free from UTIs and I was willing to try almost anything to get there. I ordered some D-mannose powder and began taking it daily. I would mix one teaspoon of D-mannose powder in a glass of water and take it each night before bed. It was a relief not to be taking antibiotics. It felt good to have an aid within easy reach, stored at my very own home. It felt empowering, as though I could finally take back control of my urological health.
More than six months passed, and I didn’t get an infection. I was in disbelief. Of all the things I had tried over the years, I had not anticipated that this thing called D-mannose might be the tipping point. I was noticeably healthier, happier and more relaxed. I wasn’t anxious about when the next UTI might hit, as I finally felt as though I had a practical solution on hand!
D-mannose has changed my life, for the better
D-mannose worked for me. From six months onwards, I dropped my daily D-mannose back to just a case-by-case basis. I simply had a teaspoon of powder mixed in water if I felt especially susceptible to an infection at that time—such as if I was dehydrated or feeling run down. I also purchased some of the D-mannose capsules and kept them in my car and handbag, for times when I might be caught off-guard or on the go. I felt confident and equipped to handle an infection if one arose, but thankfully and amazingly, one never did.
As of April 2014, I had not had a UTI for one year. I can’t describe just how liberating it felt. No longer nervous about travelling, my partner and I booked a big backpacking trip through Eastern Europe—something we had always wanted to do. D-mannose changed my life. I will be forever grateful to my urologist for going the extra length and telling me about it when there was no personal need or incentive for him to do so. I tell all my friends and family who have suffered from UTIs about D-mannose and its potential benefits. I wish someone had told me about it sooner, so the least I can do now is share the news of it with others.
I tell all my friends and family who have suffered from UTIs about D-mannose and its potential benefits. I wish someone had told me about it sooner.
Spreading the word far and wide
The urge to spread the word about D-mannose was so compelling I decided to start a website so that I could share the information beyond my peer group, with as many people as possible. I launched D-Mannose Info—a website about D-mannose and its ability to prevent UTIs. Please take a look and if there are ways you think I could improve the site to help more people, please get in touch and let me know. I would love to hear from you.
I know everyone’s experience with UTIs is different and I’m not suggesting D-mannose is the easy answer to all of the issues. What I can say is, keep asking questions and seeking help from different doctors and specialists until you find one who you feel really listens to you, your situation, and endeavours to help. I hope you can find some solace in hearing a chronic UTI story with a happy ending and I sincerely hope that one day soon, you too will find relief.
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