Carly’s Chronic UTI Story

31 Jul Carly’s Chronic UTI Story

Reading Time: 6 minutes

(Carly’s story was updated in October 2024.)  Carly was 21 when she had her first UTI.  She was treated with antibiotics and a week later her symptoms were back.  This pattern continued. Her doctor believed each episode was a new infection but she wasn’t so sure.  She decided to take to the internet to learn more.  She first heard about Hiprex when reading through some chronic UTI websites and decided to buy some and give it a go.  After 10 months taking Hiprex daily, along with a three-month trial on antibiotics, she feels completely well and is excited to be planning her wedding.

 

I got my first UTI just over a year ago

My bladder problems started out like any normal UTI.  I had never experienced a UTI before. I was new to sex and had sex with my partner one to many times in one day.  I knew about emptying your bladder afterwards and I think my bladder was basically empty after so many rounds, so it was just a few drops I could pee out after sex the last time. Rookie mistake.

At 1-2am the next morning I realised I was getting up a lot to pee and I wasn’t peeing huge amounts, maybe a trickle. Having never had a UTI, I thought nothing of it or the slight pain above my pubic bone where my bladder was.

Well, midday the following day is when it got bad. We were in the middle of a state COVID lockdown and my symptoms were now burning, frequency, stabbing pain in my pubic bone and hardly any pee when I tried to go.

My sister got me cranberry juice and Ural to help. We figured out I had a UTI.  Unfortunately, with the lockdown and living in a rural area with few local doctors, I couldn’t get an appointment for two days. I managed these awful symptoms for two days and by the time I saw the doctor I was in a lot of pain and passing blood in my urine.

Little did I know, my journey would start here. As per standard routine, a urine sample was sent away for a culture test. The male doctor requested an STD test as well because he seemed more concerned about my sex life. He was trying to convince me it was chlamydia.  I felt as though he was treating me like I didn’t know what I was talking about.

I didn’t have to wait for the test result. I was given a week’s worth of trimethoprim and sent on my way. Two days into the treatment I felt normal again. When my culture test came back from the lab, it reported a high load of e coli in my urine, and a borderline kidney infection (and not chlamydia). Despite my relief, this is where things went downhill.

 

A week after completing antibiotics my infection was back!

Having thought a week’s worth of antibiotics was enough to treat the infection that was reported, I was told a longer or repeat script wouldn’t be necessary. So, I continued my life as normal.  A week after finishing the course of antibiotics, all my symptoms returned. I went back to the doctor and was given another week’s worth of antibiotics and another urine sample was sent off for a culture test. Fortunately for me it also came back positive for e coli, like last time, and the doctor insisted this was a new infection. At the time I believed him because I didn’t know enough to realise it was the same infection that hadn’t fully cleared.

A week after finishing the course of antibiotics, all my symptoms returned. I went back to the doctor and was given another week’s worth of antibiotics and another urine sample was sent off for a culture.

 

This whole thing started in July 2021.  After about a month of this repeat cycle happening, I decided enough was enough and I started to do my own research. I went online and started searching. I was directed to the Chronic UTI Australia website and then the Facebook support groups. I jumped on it straight away and got accepted into the group.

I spent days going through their research files and eventually bought myself a copy of Professor Malone-Lee’s book ‘Cystitis Unmasked’. In between this time, I was sent off for routine tests to see if there was an anatomical reason for my repeat UTIs. I had an ultrasound on my kidneys to see if there were any defects or if my bladder was emptying completely.

 

Hiprex was a life saver 

By now I had learnt about Hiprex (Hexamine Hippurate), a drug available off the shelf in Australia, and bought some straight away. I started straight onto the dose of one tablet twice daily, along with vitamin C. I was lucky my body could tolerate it.  I started myself on the Hiprex protocol in September 2021.

In no time I started to feel like a brand-new person as days grew into weeks without any symptoms.  My mental health and physical health started to improve. I did have two to three break-through flares during this time.  I managed them by increasing my Hiprex to three tablets a day as soon as symptoms started, as per the protocol’s recommendation.  An hour later I would be back to normal.

I had a bad break-through flare in February 2022.  After increasing my Hiprex, I still had symptoms hanging around after a week and a half. I decided perhaps I needed to start the antibiotic treatment protocol.  I knew my local doctor would never support this treatment so I reached out to support group members in my own state and I found a doctor three hours from my hometown who would treat me.

So, we did the three-hour drive. My partner and I got up early and he drove me to the doctor. I have been lucky to have such a supportive partner and he was so open minded. I saw this doctor and he was familiar with the chronic UTI treatment protocol and had been successfully treating several patients.  He started me on Keflex, as per the chronic UTI treatment protocol, alongside the Hiprex I was already taking. It was March 2022 when I started long-term antibiotics and I had already been taking Hiprex for seven months.

I took the antibiotics for three months.  Unfortunately, even with strong probiotics, my body couldn’t handle it. I ended up with bad thrush and gut issues. It was logical for me to discontinue the antibiotics, so I stopped taking them on the 8th June 2022 and continued with Hiprex as before.

 

My life is normal again, I’m feeling great and planning my wedding!

It’s now the end of July 2022, over a month since stopping antibiotics, and I feel great. I still take Hiprex twice daily and have been doing that for 10 months now with great success.

I no longer stress about sex, and it’s become an enjoyable factor in my life. I don’t worry about water intake as much as I did. I drink and eat whatever I want without stressing and I live a typical, normal life.

This is a horrible thing for any young girl to go through— I was just 21 when this started. I never thought I’d ever have an illness like this because I was young and healthy. My advice to anyone dealing with this, or if you suspect you have a UTI that isn’t being properly treated, is to research, listen to your body and never give up advocating for yourself.  Go outside your local area if you need to and trust your gut instinct if you feel something isn’t right.

I caught my chronic UTI early and I believe this has saved me years of tests and pain. I think it’s also why I’ve been able to manage my chronic UTI largely with Hiprex alone.

Hiprex was a life saver for me when doctors wouldn’t prescribe antibiotics, or only short courses of antibiotics that didn’t fully clear my infection. Don’t be afraid to reach out for help. I am so happy to be living a normal life now and I’m even planning my wedding. I’m happy and excited to think I can enjoy my wedding day without being in pain and living on the toilet like I was just 12 months ago.

 

UPDATE:  Fast forward to October 2024

Not long after I wrote my story, I continued to take just Hiprex.  As of early-mid 2023, I have only been on one tablet at night with no need for vitamin C.  I have not had any, or only very little, symptoms since.  I will take an extra tablet if I feel anything, but I haven’t had the need to do that.  I’ve honestly put this on the back burner. This is amazing for my life.  I am currently pregnant with my first baby [due in December 2024] so there is hope for everyone!

 

 

 

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