Article Quick Links
- UTI definitions to help clear up the confusion.
- Why do I keep getting UTIs?
- Different types of chronic urinary tract infection.
- What causes a UTI to become chronic?
- When to see a doctor for a chronic urinary tract infection.
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 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.
|Reinfection 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.|
|Persistence 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.
“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.
|“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." |
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
|RUTI||Recurrent 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.
|cUTI||Chronic Urinary Tract Infection / Chronic Cystitis||A persistent infection of the bladder. |
As with RUTI, many females are diagnosed with chronic cystitis indefinitely
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.|
|Hypersensitive Bladder Syndrome|
|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.
“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.
"...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."
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.
In 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.
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:
|Stage One||THE 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
|Stage Two||THE 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
|Stage Three||THE 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
|Stage Four||THE 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
|Stage Five||THE SCIENCE:|
• Biofilm community formation continues
• Antibiotic resistance increases as the biofilm develops
HOW IT FEELS:
• No UTI symptoms, or low level chronic symptoms
|Stage Six||THE 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
|Stage Seven||THE 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.
“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.
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
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.