Chronic Urinary Tract Infection Vs. Recurrent UTI

By Melissa Kramer

11 mins

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UTI Definitions: Let’s Clear Things Up

You’ll notice the headline here reads chronic urinary tract infection. But if you’ve read other sections of Live UTI Free, you’ll also see us refer to recurrent UTI a lot. There is a method to our UTI madness, and we’ll explain below.

While many females we have interviewed refer to their ongoing symptoms as recurrent UTI, there is a point where a recurrent UTI can become a chronic urinary tract infection.

A Defintion On Live UTI FreeA recurrent urinary tract infection is officially defined as three episodes of a UTI in the previous 12 months or two episodes within the previous 6 months.

At the moment, it is generally accepted that recurrent UTIs occur due to either reinfection or a persistent infection.

A Defintion On Live UTI FreeReinfection refers to an infection where the pathogen is eradicated by treatment, then the same or a different pathogen ascends the urinary tract to cause a new infection. We’re not going to go into this as many studies have shown this is unlikely to be the cause of most long term recurrent UTIs.
A Defintion On Live UTI FreePersistence means the pathogen that caused the UTI is not completely cleared from the bladder by treatment, remains detectable in the urine, and after treatment returns to a level that once again causes symptoms of infection. This cycle of persistence can repeat indefinitely, feeling like a new infection each time. A persistent infection is also called a chronic urinary tract infection.

More and more evidence supports the theory of persistent infection, indicating that many recurrences of UTI may actually be caused by an underlying bladder infection caused by ineffective initial treatment.

Recurrent UTIs caused by a persistent infection in the bladder are also referred to as chronic cystitis or a chronic urinary tract infection.

This concept is important, and we want to highlight here that while the terminology used for various urinary tract conditions may sound different, it could be referring to the same thing.

When we refer to recurrent UTI in this site, we mean persistent infections which are also called chronic urinary tract infections.

If your frequent UTIs are actually caused by an underlying chronic urinary tract infection, you need to pay attention here:

Whatever you’re doing to treat each occurrence of UTI is probably not working.

The fact that your UTIs keep returning should be enough evidence of this. But you may not know why chronic urinary tract infections are so hard to properly treat. Fortunately, we can explain it through super interesting science.

 

Why Do I Keep Getting UTIs?

While most uncomplicated UTIs either resolve on their own, or with a course of antibiotics, there is an increasing number of cases of chronic urinary tract infections that cause ongoing symptoms.

You get a UTI, you take the antibiotics you are given, the symptoms disappear, and everything seems normal, until you suddenly find yourself with another UTI… You take the antibiotics you are given, the symptoms disappear, and everything seems normal, until…

It may sound like a broken record, but this is the situation more and more females are finding themselves in.

A Quote On Live UTI Free About Recurrent UTIs“I’ve had recurrent UTIs for around 15 years. I take antibiotics when it gets really bad, and it seems to help, but I always get another one, and I always anticipate getting another one. I try my best to prevent it, but it seems inevitable.”

While the statistics around chronic urinary tract infections are hard to find, we do know that:

  • 26-44% of females with their first UTI will experience a second UTI within 6 months.
  • With each UTI, the risk of another UTI increases.
  • Reports say the period of recurrence is typically 1 or 2 years, before the infections cease. That is a long time to suffer from UTIs, and our research interviewees indicate that 1 to 2 years is a gross underestimation.
  • Most females who experience recurrent UTIs do so despite antibiotic treatment, and despite being otherwise healthy individuals with no anatomical abnormalities in the lower or upper urinary tracts.
  • Testing and treatment guidelines for chronic urinary tract infections are inadequate or do not exist in most parts of the world. This means even when doctors want to help, they generally don’t have the resources or guidance they need to be able to.
  • A report published by the National Institute of Health found that 74% of females diagnosed with Interstitial Cystitis had previously been diagnosed with recurrent UTIs. Interstitial Cystitis (defined below) is a painful set of urinary tract symptoms with no identified cause and no known cure.
  • 92% of the females included in the above report had also received negative test results after having their urine cultured (more on this in our testing guides).

In short, a significant number of females move through escalating stages of diagnosis as antibiotic treatment fails to cure them and testing fails to find a cause.

A Doctor Quote About Recurrent UTIs On Live UTI Free “Most UTI guidelines are aimed at management of simple uncomplicated UTI. It can be very difficult to successfully manage complex or recurrent UTI in primary care. If symptoms persist, or where there is diagnostic uncertainty GP’s will need to make a referral for specialist assessment."

Dr Jon Rees, Chair, Primary Care Urology Society, UK

We want to illustrate that because this escalation of diagnoses of chronic urinary tract conditions is not based on positive UTI test results, it relies solely on the opinion and experience of your medical practitioner.

Because there are no guidelines on managing complex or recurrent UTI, your doctor is generally not in a position to help, and should make a referral to a specialist that can.

Our research has shown this is often not the case, and a practitioner may instead decide that possible avenues for testing and treatment are exhausted. At this point, a diagnosis of Interstitial Cystitis may or may not be given, depending on the practitioner.

For females that progress from a single UTI, to recurrent UTI or chronic urinary tract infection, to a diagnosis of Interstitial Cystitis, there has historically been very little hope of effective treatment. We hope to help change this.

 

Different Types Of Chronic Urinary Tract Infection

Depending which country you are in, what your symptoms are, and which terminology your doctor is familiar with, you may have heard the following terms to describe different conditions of the urinary tract:

Chronic Urinary Tract Conditions: Different Names For The Same Family Of Problems

AcronymTermDefinition
RUTIRecurrent Urinary Tract Infection
(Specifically, persistent recurrent infections)
Three episodes of a UTI in the previous 12 months or two episodes within the previous 6 months. RUTI can be classified as a persistent infection or a reinfection.

The open nature of this definition means there is no logical end to this diagnosis. Even after twenty years of UTIs, this definition can still apply to you.
cUTIChronic Urinary Tract Infection / Chronic CystitisA persistent infection of the bladder.

As with RUTI, many females are diagnosed with chronic cystitis indefinitely
IC
PBS
BPS
Interstitial Cystitis
Painful Bladder Syndrome
Bladder Pain Syndrome
An unpleasant sensation (pain, pressure, discomfort) perceived to be related to the urinary bladder, associated with lower urinary tract symptoms of more than six weeks duration, in the absence of infection or other identifiable causes.

The American Urological Association

HBS
HSB
Hypersensitive Bladder Syndrome

Hypersensitive Bladder

An umbrella term used in East Asia to cover conditions resulting in symptoms including, bladder pain, discomfort, pressure or other unpleasant sensation,
and is associated with disorders such as a frequent need to urinate day and night
and/or an urgent need to urinate. It encompasses Bladder Pain Syndrome. International Painful Bladder Foundation

If you do a little research, you will quickly find there are also sub-categories within these  conditions, with varying symptoms and levels of injury to the urinary tract.

It is not our intention here to imply these chronic urinary tract conditions are the same, or that they affect people in the same ways, but they do have an important thing in common – in the majority of cases, no cause has been identified, and the condition is therefore not curable. Treatment focuses on reducing symptoms rather than resolving the underlying issue.

A Quote On Live UTI Free About Recurrent UTIs“After about 3.5 years of chronic urinary tract infections, two doctors said they couldn’t help me further. A third said ‘maybe you just have irritable bladder or IC.’ That ‘maybe’ didn’t feel like a diagnosis. Why did my test results tell them nothing?”

So why do we mention these chronic urinary tract conditions?

There is strong evidence that many of these individuals have been misdiagnosed with incurable conditions, when in fact they are afflicted with a chronic, embedded bladder infection that can be identified with appropriate testing, and treated effectively over time.

Let us explain…

 

What Causes Chronic Urinary Tract Infection?

This is where the science gets a little more complicated. (But fascinating too!)

We’ve talked about what causes UTIs. We also know that recurrent UTIs can be attributed to a persistent bladder infection that is not properly eradicated by treatment, and returns to a level that causes symptoms.

This underlying bladder infection can last for years in the form of a chronic urinary tract infection. For many females, this cycle of acute and symptom-free periods is never broken, and some move on to be diagnosed with the conditions mentioned above, such as Interstitial Cystitis (IC), or Painful Bladder Syndrome (PBS).

These conditions are considered to be incurable, however…

Interstitial cystitis is a diagnosis of exclusion. This means IC is diagnosed in the absence of any other obvious cause, rather than being diagnosed due to a specific set of symptoms and/or test results. This is clear in the official definition for IC above.

A diagnosis of exclusion leaves a lot of room for misdiagnosis, with many researchers now suggesting cases of misdiagnosis may be more common than many people think.

A Doctor Quote About Recurrent UTIs On Live UTI Free "...if the [dipstick] test is negative, the sensitivity is such that there is no justification for claiming you do not have an infection... if the culture is negative it is again wrong to claim this proves an absence of infection; the culture is too insensitive. For these reasons, negative tests are unhelpful and a cause of terrible suffering."

Professor Malone-Lee, Whittington Hospital, UK

And this isn’t just theoretical. Hundreds of females diagnosed with Interstitial Cystitis – that is, the absence of infection – have been able to receive better testing that has identified an infection.

With an infection identified these individuals have gained long term treatment that relieves their painful symptoms and has often lead to complete resolution of the issue.

Why has it been so difficult to detect these infections?

There is a culprit here, so let’s take a closer look. Behind the misdiagnosis of hundreds of thousands (potentially millions) of people, are embedded chronic urinary tract infections called biofilms.

A Defintion On Live UTI FreeIn the case of a chronic urinary tract infection, a biofilm is a community of bacterial cells that stick together and adhere to the bladder wall. These cells then produce a protective slime that shields the bacterial community from antibiotics and the natural defences of the body.

Chronic Urinary Tract Infection - Simplified UTI Pathway

This goopy shield makes diagnosis and treatment very difficult. And while the bacteria are contained within their shield, the body is less likely to mount a response to their presence.

When bacteria are periodically released or escape from the biofilm, the body recognises a threat and an inflammatory response is triggered, heightening symptoms of a UTI. This can be experienced as a cycle of acute symptoms, followed by periods of fewer or no symptoms.

Let’s compare the science of biofilms with the symptoms a sufferer of a chronic urinary tract infection may experience, using E.coli as an example pathogen:

 

Chronic Urinary Tract Infection - UTI Pathway Step 1
Stage OneTHE SCIENCE:
• Infection and inflammation of urinary tract caused by invasion and multiplication of bacteria or other pathogen.

HOW IT FEELS:
• UTI symptoms including burning when urinating and urgency
Chronic Urinary Tract Infection - UTI Pathway Step 2
Stage TwoTHE SCIENCE:
• Free-floating bacteria form a weak attachment to the bladder wall
Antibiotics can still be effective during this stage

HOW IT FEELS:
• Without effective treatment, UTI symptoms remain as body continues to defend against the threat
Chronic Urinary Tract Infection - UTI Pathway Step 3
Stage ThreeTHE SCIENCE:
• Bacteria form a strong attachment to the bladder wall and begin to form a biofilm encased in protective slime
• Antibiotic resistance increases, treatment becomes more difficult

HOW IT FEELS:
• Without effective treatment, UTI symptoms remain as body defends against the threat
Chronic Urinary Tract Infection - UTI Pathway Step 4
Stage FourTHE SCIENCE:
• Free-floating bacteria are flushed from bladder via treatment or natural body defenses
Biofilm remains intact

HOW IT FEELS:
• UTI symptoms decrease or disappear
Chronic Urinary Tract Infection - UTI Pathway Step 5
Stage FiveTHE SCIENCE:
• Biofilm community formation continues
• Antibiotic resistance increases as the biofilm develops

HOW IT FEELS:
• No UTI symptoms, or low level chronic symptoms
Chronic Urinary Tract Infection - UTI Pathway Step 6
Stage SixTHE SCIENCE:
• Biofilm detachment
• Bacteria escape biofilm and enter urine as free-floating bacteria

HOW IT FEELS:
• ‘Recurrence’ of UTI
• UTI symptoms including burning when urinating and urgency return
Chronic Urinary Tract Infection - UTI Pathway Step 7
Stage SevenTHE SCIENCE:
• New biofilm attachments may begin to form
• Free-floating bacteria are flushed from bladder
• Without appropriate treatment, the process repeats

HOW IT FEELS:
• A cycle of ‘recurrent’ UTI as the biofilm fluxes over time

We should also note here that biofilms can be fungal as well as bacterial, and there may be more than one pathogen present in the bladder at any given time. In fact, biofilms can be complex and diverse communities of multiple pathogens.

For the sake of simplicity, and because bacterial infections of the urinary tract are much more common than fungal, we’ll stick to bacteria for our examples. But keep in mind, what causes a chronic urinary tract infection in one person is very likely different from the next person.

Bacterial biofilms can also be found INSIDE the cells of the bladder wall, forming intracellular bacterial communities (IBC). In fact, evidence of IBCs was found in about one fifth of urine samples from females with acute uncomplicated symptomatic UTIs. Fascinated? You can find a more in depth look at how biofilms and IBCs form here.

This is not far-fetched science.

The National Institute of Health (NIH) estimates around 80% of all bacterial infections in humans involve biofilms.

Persistent recurrent UTIs, also known as chronic urinary tract infections, are examples of UTIs where the bacteria has formed a biofilm or embedded itself in the bladder wall to form an IBC.

Research has also shown that a high percentage of females with Interstitial Cystitis may in fact have biofilms, IBCs, or both within their bladder, and that this is the cause of their ongoing infection and recurrent symptoms.

A Quote On Live UTI Free About Recurrent UTIs“I get a UTI every month or so. In between each really bad UTI I would feel mostly better, but I’d often have sensations like another UTI was coming on. I was continually drinking water to try and prevent it, but, like clockwork, my symptoms would suddenly get much worse and I’d end up with another full blown UTI.”

We hear many people refer to this as a cycle of ‘flare ups’ or ‘episodes,’ implying they believe it to be a continuous, chronic issue with both acute and symptom-free phases. Evidence shows they are probably right.

For those who suffer from a chronic urinary tract infection, the symptoms and ongoing pain can be debilitating, dramatically and adversely affecting their daily lives, as well as their overall mental and physical health.

Although the existence of biofilms in human infection has been accepted in medicine for decades, it is much more recently that attention has turned to their involvement in chronic UTI.

Traditionally, testing labs have focused on culturing and testing free-floating pathogens. If free-floating pathogens are identified, their susceptibility to antibiotics is also tested while they are in a free-floating state.

Once the susceptibility has been tested, it is possible to prescribe the right treatment.

The problem with these types of tests is that they do not specifically look for evidence of biofilm formations in the bladder. And therefore, they are also not a mechanism for testing which treatments may be effective against a biofilm-forming community of microbes.

To really figure out how to treat a chronic urinary tract infection caused by a biofilm or intracellular bacterial communities (IBCs), it would be necessary to test different treatments on the biofilm or IBC, rather than on free-floating, easy-to-target pathogens.

Some advancements in testing have been made. Researchers have been able to pinpoint indicators of biofilms and IBCs in the bladder, such as filamentous bacteria and exfoliated IBCs.

This sounds complicated, but all it really means is bacteria that have taken on an elongated and/or branched shape as part of a bacterial community, and cells that have been shed from the bladder lining. Both are signs of an embedded bladder infection.

Unfortunately, this area requires a lot more research, and tests to specifically identify an embedded chronic urinary tract infection are not available to the general public.

Treatment protocols for biofilms do exist, however, specialists who can administer these therapies are few and far between. And this type of treatment requires regular monitoring to evaluate any improvement in the embedded infection.

You can read more about the issues with UTI testing, and how to find better testing in the next sections.

We hope the information in this site can shed some light on the topic, and guide you towards a resolution.

 

When To See A Doctor For A Chronic Urinary Tract Infection

If you’ve had a UTI previously, you are in a much better position to recognize the symptoms, and you may feel confident in what action to take.

You may even be able to take this action at the first sign of a UTI, and prevent the symptoms from escalating. This doesn’t necessarily mean you have cleared the infection. If you’ve read the fascinating tale above about chronic urinary tract infection and biofilms, you’ve probably realized that by now.

For females with a chronic urinary tract infection, it’s not just about treating isolated symptoms, it’s about breaking the cycle and eradicating the underlying cause.

The ideal scenario wouldn’t involve a UTI at all, we get that. But once you’re on that rollercoaster, you really need to find a way off safely. This is what the ride should look like…

Symptoms → Test → Results → Diagnosis → Treatment → Cure

Chronic Urinary Tract Infection - Simplified Journey of a UTI

Anyone who has experienced a chronic urinary tract infection can tell you this isn’t always how it pans out.

Instead, for many females, parts of the sequence are missing, and a cure has been out of reach. There are a number of reasons for this, which we’ve covered in the next sections, so read on!

Getting tested and getting an answer as to what is causing your UTI is your best bet to finding a permanent solution.

If you have had more than 2 UTIs in the last 6 months, or more than 3 UTIs in the last 12 months, it’s highly recommended that you get tested.

If you are uncomfortable taking antibiotics without knowing what exactly you are treating, you should get tested.

If you have recurrent UTIs and you have never been tested, you should get tested.

And the best way to get tested is to see a doctor. Finding the right doctor, however, can also be tough. But first things first.

Now that we’ve convinced you to pursue testing, we have some heavy information to lay on you…

Getting accurate testing for UTIs is extremely difficult.

So next we’ll share some frustrating facts on why this is, before providing a few tips on how to get better UTI testing. It’s always best to arm yourself with information before embarking on a journey towards better health.

 

Share your questions and comments below, or get in touch with our team.

 

 

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Comments

Steph K says:

I am a 54 year old female and have been dx with at least 2 UTI’S in the last 6 months. I know when I have one because urine has a foul odor and appears foggy. I just ended a cycle of antibiotics…3 pills for $90 as insurance didn’t pay. I know I have another one because sxs have returned. I work full time where most of day is spent in the community with limited access to restrooms. As I’m aging, I find the need to urinate is more frequent and because of limited access to restrooms, could this be causing reinfection. Also, has there ever been reports of being able to go on SSDI due to the condition?

Hi Steph, I’m not aware whether it’s possible to access SSDI due to chronic UTI. I suspect it isn’t, though many people report an inability to work because of ongoing infection and the associated pain and frequency. Chronic UTI practitioners tend to take a longer term approach to treatment, and you may like to speak with one of the practitioners we’ve listed on our site. This page also includes more information on recurrent UTI treatment options. I hope this helps, and you can always get in touch directly if you have other questions. Melissa

Kai H says:

I am a 19 year old that just recently started getting reoccurring UTI’s just at the beginning of this year. And it is driving me to the point of insanity. I’ve had three full blown ones over the last five months and I’ve finally convinced my parents to let me see a urologist. I’ve taken all the precautions (like everything) to prevent them and they still have me feeling like im going crazy. Being away at college has had set backs because the doctors didn’t believe me the second time It came back and then forced me to get STD tested in order to receive antibiotics I did and I was clear of course knowing I would be and they are still coming back. Currently sitting here typing with frustration as having to deal with my third.

Hi Kai, I can sympathise with your frustration! It would be great to hear more about your experience so I can share any useful resources. This is the best way to get in touch. I hope you find the urologist helpful. Melissa

LT says:

I have had many, many UTIs after having a hysterectomy during which my ureter was cut.Spent about 3-4 years having bouts of UTIs.Had multiple stints put in to keep the repaired ureter open.Eventually had the ureter re-implanted and bladder moved over to make it accessible. Had the hyster due to estrogen receptive breast cancer. Had 3-4 UTIs since November and 2 of those within the last month. Currently on an antibiotic and still feel some burning when urinate but not every day. Should finish this round of treatment in 2 more days but afraid this is not over since still having pain. Have reflux from the injured ureter. Sexual activity is certain infection. Saw urologist in November. Did a cystoscope everything fine. When any urine test done ALWAYS have blood in urine. Help!

Sorry to hear you’re experiencing that! I’d love to hear more via private message, so I can share further resources. You may also like to speak with one of the chronic UTI practitioners listed on our site, for advice on the best approach. Melissa

Steve says:

I am a male who is suffering from recurrent UTIs with 2 hospitalization for sepsis. I have been on multiple antibiotics that just hold it at bay until it becomes full blow. I am in a constant state of sickness, no energy, unable to get back to baseline. My urine cultures grow gram negative rods with isolated bacteria of EColi. I’ve ungone every test in the book to find the source without success. Bactrium cause nephrotoxicty, Keflex only holds it for a while, Ciprio no good. Thoughts?

Hi Steve, that’s a tough situation. Can you get in touch with me directly via our contact form so I can send you some more resources? Melissa

JC says:

I am under the care of the Professor Malone-Lee quoted in this article. I’ve suffered with persistent symptoms for four years, and the Professor diagnosed what he believes to be an IBC caused infection. The treatment is long and dogged, I have been seeing him for a year thus far. I hope to see results soon as it truly is a life altering condition, which few understand and thus leaves sufferers anxious and isolated. Stay strong ladies!

Hi Crystal, thanks for sharing your experience and your optimism. Life altering is indeed a good way to describe chronic UTI. I hope you see results very soon and I’d love to hear about your progress. Melissa

Lucille says:

Doctors always seem to blame the patient for poor hygiene or not emptying the bladder prior to sexual intercourse—most women know what to do and do it but UTI’s persist!! It’s time for women to be tested effectively and new treatments to be employed. Billons of dollars are spent annually to treatment UTI’s that return quickly especially when women are sexually active. We have suffered long enough with this horrid affliction—researchers must be charged with finding safe, effective and affordable solutions NOW.

Hi Lucille, it’s true, you can have ‘perfect’ hygiene and still suffer from chronic UTIs. We agree that guidelines must be updated to reflect the inadequacy of current standard UTI testing methods, and much more research is required to provide more effective testing and treatment options. We know there are practitioners and researchers working on this, and we’ll continue to share new information as it becomes available. If you have any resources to share, please get in touch!

LK says:

Thanks for this great website. I was diagnosed with IC/BPS 4 years ago through a cystoscopy. I have strongly suspected an imbedded bacterial infection as I had recurrent UTI’s for about a year before it became full blown pain and sometimes frequency, completely changing my life. Your website explains things in very understandable terms. I love websites like this that offer scientific reasons, rather than forums that make me feel depressed. I truly believe the issue of UTI’s and IC/BPS is gaining traction in the medical world offering hope to people that suffer these life altering symptoms

Thanks for the great feedback. We’ve heard a lot of similar stories from people with recurrent UTIs that were later diagnosed as IC/BPS. We hope more people can find answers through more accurate testing and further research, and we’ll do what we can to help. Keep in touch with your own updates!

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