My Chronic, Embedded UTI Story

By Anna T.

5 mins

In 2017, I can honestly say I have a UTI history that dates back 30 years. They were always post-coital, tested positive for bacteria and always responded to a course of antibiotics. However, this changed in 2000, when the first hint of an embedded UTI emerged.

 

The First Sign Of The Chronic UTI To Come

In 2000, after having another UTI, my symptoms did not fully resolve after a course of antibiotics. After many months of continuing symptoms, several different antibiotics and a series of negative tests, I was referred to an urologist and sent off for an ultrasound.

The infection eventually became severe and I was bleeding from the bladder. The next test was positive for E. coli and a ‘raging infection’ was confirmed by cystoscopy the following day. I was given a three-week course of antibiotics followed by a three-month low-dose, prophylactic antibiotic course of Macrodantin.

“I was told I had probably experienced a low-grade infection that had kept under the testing radar.”

My acute symptoms cleared quickly and the remaining symptoms resolved over time.

 

And So My Chronic, Embedded UTI Began

From 2000 I had my occasional post-coital UTIs that tested positive and always responded to antibiotics. This changed once again in 2008.

After a bad infection, my symptoms did not fully clear with several courses of antibiotics and subsequent tests were negative for bacteria (but showed leukocytes, blood, epithelial cells and ‘no significant growth’).

After a number of months of continuing symptoms, I was sent back to the urologist. He suggested that sometimes antibiotics have an ‘anti-inflammatory effect’, which he said explained my improvement while taking them – but there was no longer an active infection. It was concluded I had developed an overactive bladder from the initial infection.

“My symptoms (bladder burning, urethral burning, burning on re-filling, frequency etc) continued, and I gave up on seeing doctors.”

I was trialled on an anti-cholinergic (Ditropan) which did not help. My symptoms (bladder burning, urethral burning, burning on re-filling, frequency etc) continued into 2009 and I gave up on seeing doctors.

During this time I discovered d-mannose and took it daily. This helped ease my symptoms and slowly they resolved.

 

I Refused To Accept A Diagnosis Of Exclusion

Things had returned to normal and I only had the occasional post-coital UTI that tested positive for bacteria and always responded to antibiotics.

Once again, this changed in October 2013. After feeling a UTI developing, as usual I tried to ‘flush’ the infection through by drinking copious amounts of water, as had been recommended by different doctors over the years.

After seeing my GP with a very diluted urine sample, I despaired when the test came back negative and no further action was required.

My UTI symptoms continued and worsened. After a second negative test I was trialled on a course of antibiotics. After a week of no improvement, I was told to stop the antibiotics. During this period, tests showed raised leukocytes, blood and epithelial cells – and ‘no significant growth’.

By now I was suffering intense, rock-like bladder pressure, burning at the top of the bladder as well as at the base and neck, intermittent urethral discomfort and RIF (Right Iliac Fossa) pain.

This was significantly life altering. I was no longer able to work and spent the majority of my time lying flat with a heat pack over my abdomen to help ease some of the discomfort.

“I became tired, withdrawn and stopped socialising and communicating with my family and friends. I started to feel helpless and increasingly sad.”

Again, I was referred to a new urologist who sent me for a special urine test and a CT scan. He said I would need a cystoscopy before he could diagnose me with Painful Bladder Syndrome (PBS). He mentioned the ‘autoimmune’ theory and how this was connected to women when under ‘stress.’

I did not accept the offer of the cystoscopy or the PBS diagnosis and started my own research. I was sure my problem was linked to infection, as it had been back in 2000. I was certain I was suffering from an embedded UTI.

 

Finally, A Practitioner Who Listened And Understood Embedded UTI

In my research I came across the words ‘occult bacterial infection’ and this struck a chord with me. I was then extraordinarily lucky to come across a very knowledgeable and informative online group and learnt about the work of an English Professor who ran a specialist clinic in London treating complex, recalcitrant urinary infections.

I spent the next couple of years managing my symptoms the best I possibly could and learning everything I could get my hands on about embedded bladder infections.

In 2016 I finally travelled to London to see the Professor. At my appointment he asked for a fresh, undiluted urine sample which he looked at straight away under his microscope. He was looking for signs of infection, in particular white blood cells and epithelial cells.

He then listened closely to my UTI history and asked lots of questions about my symptoms. Unlike all the other doctors I had seen in Australia, he seemed very interested in my symptoms. He also performed a quick, non-invasive physical examination.

“I was diagnosed with a chronic UTI and he explained I’d probably had the infection for some years.”

He started me on antibiotic treatment immediately and warned me that it was likely to take some time to completely clear this type of embedded infection.

 

My Chronic UTI Treatment

Part of managing the treatment is to monitor symptoms, along with urinary white blood cells and epithelial cells. Local clinical labs refused to do this, so I found a trained person who agreed to do this independently.

I was to keep in contact with the Professor by phone and email and he would communicate with my local GP.

I was very lucky that my GP was so supportive and agreed to help with this unconventional approach. It was clear from the beginning she wanted to help me, but she had no experience or understanding of this condition or how to treat it without guidance.

Early into treatment I had a change in antibiotics when we noticed my white blood cells and epithelial cells had suddenly shot up. They soon dropped back when we introduced a new antibiotic.

“In all, it took around eight months before I noticed my symptoms had been gradually improving.”

It’s common for urinary signals to improve long before your symptoms do. I have been on treatment for my chronic, embedded UTI for 14 months and I’m now 80 percent better.

I experience occasional symptoms that might affect me for a brief period, but from my understanding of the science, I know this happens when infected bladder wall cells shed and the offending bacteria become active. It never lasts very long.

Even though my symptoms have improved enormously, I still have a way to go before I completely eradicate the infection.

If these infections remain undiagnosed and untreated over a long time (which happens because it’s such a poorly recognised and misunderstood form of UTI, which current testing cannot identify) they can become deeply embedded into the layers of the bladder wall. This means treatment can take a long time.

Many people are judgemental about taking antibiotics for extended periods, so I choose not to share this with those who don’t understand my condition. Sometimes I get comments from a pharmacist or sales assistant, so I fill my prescriptions at different pharmacies so I can avoid this.

On top of having this horrible condition, receiving judgment is extremely frustrating and unfair to deal with. Currently, long-term antibiotic therapy is the only appropriate and available treatment for people like me with a chronic, embedded UTI.

The London clinic receives many international patients, but I know not everyone can travel overseas to see a specialist. It took me over two years of on-going pain and suffering before I made this drastic decision, although now I wish I hadn’t waited so long.

 

The Situation In Australia Needs To Change

We desperately need a specialist in Australia who is educated and trained in diagnosing and treating chronic, embedded UTIs. At the moment, there is just one website, Chronic UTI Australia, that addresses this issue in the region.

This whole experience has been a horrible ordeal. In Australia I was put through various testing, including ultrasounds (as well as several transvaginal scans), CT scans, cystoscopy, several pap smears and a pelvic MRI.

“I was angrily berated by a specialist until I cried at their desk. I was told by one doctor that I research too much, and told by another it was time to focus on my life and not my bladder.”

Inadequate test results were given more credibility by doctors than the symptoms I was experiencing — which is not only disheartening, but insulting.

 

This is what I’ve learnt from my chronic, embedded UTI ordeal:

  • Current lab testing is NOT sensitive enough to pick-up embedded infections.
  • Test results showing levels of leukocytes, blood and epithelial cells indicate INFECTION is present.
  • It is untrue that infections can only be caused by a single species of a known urinary pathogen. This means reports of ‘No Significant Growth’, ‘Mixed Growth’ and counts of epithelial cells DO NOT mean the sample was contaminated and should NOT be ignored.
  • Doctors and specialists pay far too much attention to lab reports and do not give enough credibility to a patient’s symptoms.
  • Sadly, doctors and specialists, worldwide, are invested in the current status quo and will aggressively defend their positions.
  • Testing needs to change and GPs need to update their understanding of chronic, embedded UTI so they can help treat their patients.

 

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Comments

Hannah says:

I cried as I read this article. It is like reading my own story. I spent years of wandering to the GP only to be sent home without treatment as tests were negative. I felt incredibly down and I spent weeks of lying under a heat pad wondering if my life was over. I am seeing a private urologist now, who has me on a three month course of antibiotics and who I know is at the end of the phone. I am starting to feel better and my life is returning back to normal. I feel that worldwide, there are so many women trapped in this awful situation. It saddens me that these forward thinking specialists are so low in number. Thank you so much for this website- it gives me hope.

Hi Hannah, I’m so happy to hear you have found a specialist who can help, and that you’re improving! I hope you make a full recovery very soon. Perhaps you can send me a message and share more information about your doctor, in case this is useful for others in your area? Melissa

Scarlet says:

I was told by a urologist last November that I had a possible embedded infection, but she didn’t take me seriously because urgency and frequency were my only symptoms and they eventually went away. They have flared up again this year, and I still have no answers. The “IC” diet does not help and pelvic floor therapy only helps minutely, so I am also convinced mine is an embedded infection. That original urologist went on maternity leave and her replacement had no idea about embedded infections. Obviously the simple GP dipstick came back negative for UTI, I have no idea what to do next but will consult your resources for sure. Im in Aus too, Brisbane specifically, and doctors have been awful here.

Hi Scarlet, sorry to hear you’re experiencing that, it can be very frustrating. I can share further information that may help you find a practitioner in Australia. If you’d like further details, you can send me a message directly. Melissa

Emily Young says:

I was just diagnosed with IC because I have UTI symptoms but according to several cultures, a cystoscopy, and an ultrasound, no infection or other abnormalities. I’m curious to know if those tests would show an embedded UTI? I have spent the past three years getting recurrent UTI’s none of which came up negative until now (even though my first visit showed levels of leukocytes and white blood cells). Im grasping at anything that tells me its not IC.

Hi Emily, standard urine culture tests have been shown to be inaccurate so you have every reason to question a negative result when you have symptoms. You can learn more about why we shouldn’t rely on a standard culture for a diagnosis here, and alternative testing methods here. There is no test that specific looks for embedded infection, but some types of testing are more sensitive than others. If you have other questions you can message me. Melissa

Virve says:

Hello, Does embedded UTI show in bladder biopsies taken in cystocsopy?

Hi Virve, we’ve heard mixed reports on this. It may be the case that an embedded infection will be identified if the biopsy was taken at the site of the infection, but missed otherwise. We’re still collecting data on how biofilms may be identified in different types of tests, and we’ll publish more information when we have it. I’m happy to discuss it further if you want to get in touch. Melissa

Val says:

I too see the same Prof and have got my life back from being in 24/7 excruciating pain to being 90% better. GPs dont have NICE guidelines to treat chronic UTI or Embedded Bladder Wall infections in the UK so thousands of patients in the UK develop Embedded Bladder Wall infections with no proper treatment and part of this is due to cheap agar plates and too short of a duration UTI testing in the first place plus very short duration antibiotic treatment that helps to created bacterial immunity to the drugs we have. Proper testing in the first place with longer duration testing and longer duration antibiotic treatment is needed. If this doesnt happen there will be thousands more people who develop embedded infections that will also get written off to a life of living hell with the kind of 24/7 pain that you would get prosecuted for if you put an animal through it. This is a world wide problem that needs change and support. It can happen to anyone and yet we only have one clinic in the entire world where the Professor can diagnose and treat Embedded infections properly and effectively

Shahina hussain says:

Can I have contact details of professor and clinic in London please .

Hi Shahina, you can find more information about chronic UTI practitioners, including the one mentioned, on our UTI Treatment page.

Hi Val, it’s so great to hear your treatment has been successful so far! The lack of guidelines for chronic UTI is indeed a global issue, as is the limited availability of more accurate urine testing methods. We’ve covered the shortcomings of standard testing, as well as alternative testing options that are available. I’d love to hear your thoughts on those. Outside the UK, there are a handful of practitioners working on better diagnosis and treatment of chronic UTI, and we agree with you that more are very much needed. We’ll keep working to that end, sharing resources wherever we can. And we’re always happy to receive input, if you have research you’d like to send our way. Melissa

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