Basics of Chronic UTI

In much of the world, chronic UTI remains an unofficial diagnosis, despite being a very real phenomenon. Although chronic UTIs are technically recognized by the NHS in the United Kingdom, the United States has yet to document chronic UTI as its own condition officially. While recurrent UTIs are recognized in official literature, those with chronic UTIs can often be left without answers or respite. As a result, many people with continuous urinary tract symptoms will be misdiagnosed or undertreated.

There is significant evidence that chronic UTI exists as a condition separate from acute or recurrent UTI. But where official diagnoses fail, often tests will too. Chronic UTI notoriously can come up negative on standard testing protocols, once again leaving patients without the care they need. Due to a combination of inaccurate testing, misdiagnosis, and complex microbial communities within the bladder that can avoid detection, chronic UTI remains complex and nuanced but a completely real issue.

What is a Chronic UTI?

A UTI is an infection of the urinary tract. Lower urinary tract symptoms, or LUTS, involve the bladder and the urethra. Sixty percent of women and those with female anatomy will experience at least one UTI within their lifetime.

To define what a chronic UTI is, we first need to define acute and recurrent UTI. 

One-off UTIs are acute UTIs:

• They are uncomplicated 

• They do not usually return 

• They are typically are successfully treated by standard treatment protocols (such as antibiotics)

  
  

Recurrent UTIs meanwhile are defined as:

• Two or more UTIs within six months, or three or more UTIs within a year

• Have official guidelines established within the United States

• Caused either by reinfection or persistent infection. 

  
  

Persistent infection is also sometimes called chronic UTI. It is thought that many chronic UTI cases are previous infections that never went away, either due to improper treatment or lack of treatment options.

Chronic UTIs can be caused when infections are treated with the wrong type of antibiotics, or when antibiotics are given at too low or short of a dosage. When it comes to chronic UTIs antibiotics often will not work, and standard testing can show a negative result despite there being an ongoing infection. This can be due to bacteria entering the cell wall rather than remaining in the urine stream. Once bacteria are embedded in the bladder wall, they will often go on to form hard-to-treat substances called biofilms.

As our founder, Laura, puts it, it may be helpful to think of acute, recurrent, and chronic UTIs as a continual progression of the disease. UTIs can develop from the least severe, being acute, then to ongoing recurrent UTIs, and finally at the most severe; chronic UTI.

How to tell if it's a Chronic UTI

The hallmark of chronic UTI symptoms is that they may fluctuate or vary in intensity, but they do not go away.

When living with any form of UTI it can be easy to doubt your symptoms or experience. But when it comes to identifying chronic UTI, generally you will know. Listen to your body and trust the validity of the symptoms you have been experiencing. You are the first and foremost expert on your body, and as the person living through the symptoms, you are encouraged to heed your lived experience.

Knowing some of the symptoms of chronic UTI can be helpful. Chronic UTI carries many of the same symptoms as acute or recurrent UTI but on a long-term and severe scale. 

These may include:

• Urgency and frequency

• Dysuria (AKA pain or burning while urinating)

• Incontinence

• Urine with a strong smell or abnormal color

• Fatigue

• Nausea and vomiting

• Pain in the back, sides, or abdomen

• Fever and chills

• Cognitive symptoms such as brain fog or dizziness

  
  

Any of the above symptoms may indicate a chronic UTI. But like any disease, symptoms of chronic UTI can and will differ from person-to-person. 

Something we cannot stress enough is that UTI testing is fallible. Someone can have all the symptoms of a UTI, but continuously test negative. These cases are often indications of a chronic UTI.

Chronic UTIs have been shown to provide false negative results due to multiple factors. When an infection goes undetected, untreated, or inadequately treated, chronic UTI can develop as the infection transfers from the urine stream into being physically embedded within the bladder wall. As most standard tests only test for free-floating bacteria, embedded bacteria can surpass the limitations of the testing and give a false negative, even though there is a raging infection. Additionally, once bacteria have pierced into the bladder wall, slimy membranes called biofilms often will develop. These are substances made of combined microbes that act as a barrier to protect the infection. As the infection, which has burrowed inside the cell wall, is now covered by a layer of biofilms, antibiotics are unable to penetrate past the biofilms to treat the infection. The result is chronic UTI goes undetected by testing, and often untreated as well. The takeaway from these facts is that when it comes to chronic UTI, your knowledge of your symptoms and your body can sometimes be the best guidance in finding treatment.

Bringing up chronic UTI with your doctor

If you suspect you have chronic UTI you deserve to get the proper treatment for this disease. That being said, approaching doctors and medical professionals can often be challenging for those experiencing chronic UTIs. Many patients have reported feeling dismissed or not listened to by their doctors when broaching the topic of chronic UTI. While this isn’t always the fault of the healthcare workers, as most of them are operating off of old or inaccurate information, it is nonetheless discouraging for many people living with this vulnerable condition.

That is why it’s all the more important to learn how to advocate for yourself when going into a healthcare setting. Take time before your appointment to write down your symptoms and your thoughts about potential options. When in the doctor’s office, don’t be afraid to ask for more information or to take time to think about whether or not to do suggested procedures.

Some other specific things that can be helpful when discussing chronic UTI with your doctor are asking for advanced testing options, or bringing research with you. While the dipstick test and urine culture tests are the most frequently applied testing methods, there are more accurate testing options. Presenting your doctor with some research can be potentially helpful as well. However, with this method try to keep your research concise and not too overwhelming. Having the names of publications, authors, and dates on hand may be helpful too.

While chronic UTI may be a complex and misunderstood condition, if you or your loved one is experiencing symptoms you deserve to have recognition, treatment, and respite. Don’t be afraid to educate yourself on the nuances of chronic UTIs, speak up for yourself in healthcare settings, and advocate for yourself by asking for the care you deserve. You’re not alone.