Interstitial Cystitis testing and recurrent UTI treatment are big topics here at Live UTI Free.
We covered both in our recent interview with Dr Raj Patel, a urologist who uses molecular testing as a tool to get to the bottom of many issues related to the urinary tract. Clinicians who would like to get involved in our community can learn more on our clinician information page.
Our chat led us through possible underlying causes for chronic bladder conditions and how important it is to address these, while also treating infection. Read more below.path
Jump To Section:
- Interstitial Cystitis Testing: Why A Negative Urine Culture Is Not Good Enough >>>>
- Dr Patel On Molecular Testing For IC and Recurrent UTI >>>>
- How One Patient Benefited From Molecular Testing >>>>
- Sex, Constipation And Other Triggers For Bladder Symptom Flares >>>>
- Treatment For Recurrent UTI and Interstitial Cystitis Where Infection Is Identified >>>>
- About Dr Raj Patel >>>>
Interstitial Cystitis Testing: Why A Negative Urine Culture Is Not Good Enough
The American Urological Association defines Interstitial Cystitis as 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 phrase ‘in the absence of infection’ is extremely important. Until recently, no UTI test existed that could even come close to identifying every organism known to cause infection in the bladder.
This means that confirming an absence of infection previously relied on the standard urine culture, which is incredibly inaccurate (and this has been proven many times now).
A quick wrap of the reasons the standard urine culture should not be used for preliminary Interstitial Cystitis testing include:
- It was created to identify acute kidney infection, not lower UTI
- It cannot grow the vast majority of known organisms
- The presence of multiple organisms is often dismissed as contamination
We’ve covered 8 reasons that urine culture is inaccurate in a lot more detail already, so I won’t go into it here.
Not only does urine culture often fail to identify pathogens in single, recurrent and chronic UTI, this failure is also a stepping stone towards a diagnosis of Interstitial Cystitis.
Some Statistics And Facts About Interstitial Cystitis (IC)
93% of the females included in the above study had also received negative test results after having their urine cultured.
The unanswered question is, how many received negative results when there actually was an infection present?
|“The problem is the urine culture has been around for so many years, and was relied on to tell us whether you do or do not have an infection. Interstitial Cystitis is a diagnosis of exclusion where you shouldn’t have any positive urine cultures, but as we know, the urine culture is very inaccurate.”
To highlight Dr Patel’s point: Interstitial Cystitis is a diagnosis of exclusion. This simply means that symptoms occur which are yet to be explained; some things have been excluded as possible causes, but the root cause is yet to be found.
In the case of IC, someone might experience an unpleasant sensation associated with lower urinary tract symptoms and have been unable to identify the root cause.
Labeling this as IC does not mean that person should not continue to look for the underlying cause. There are many different angles to consider, and we discussed a number with Dr Patel.
|“In our office, where we have adopted molecular testing, we find far fewer patients are labeled with Interstitial Cystitis now than when I started practicing 20 years ago, because we're looking for solutions rather than treating them with a barrage of different things that we used to use for IC. I think it would definitely be worthwhile to rule out some more simple things that could help resolve their situation.”
Here at Live UTI Free we often hear from people previously diagnosed with Interstitial Cystitis who have now discovered more about the underlying cause of their symptoms. Many have gone on to find treatment, including UK reality TV star Marnie Simpson who was later diagnosed with a chronic UTI.
Dr Patel On Molecular Testing For IC and Recurrent UTI
A number of years ago, Dr Patel’s group adopted molecular testing (aka genetic sequencing) for urinary symptoms. We’ve discussed different types of molecular testing in our information on UTI testing options.
The specific test used by Dr Patel is Guidance® UTI by Pathnostics.
|“Urinary tract infections were one of those problems in urology that really hadn't received enough attention. We were one of the first practices that adopted Guidance UTI. This snowballed into us using it more and more as we came to understand the benefits of it for our patients, as well as our physicians. We then partnered with Pathnostics to create a lab in Chicago so we were able to decrease the turnaround time to close to about 24 hours, which is great for patients.”
This test offered by Pathnostics is one of the reasons Dr Patel’s practice sees so few cases of Interstitial Cystitis – they are able to identify the presence of bacteria more accurately.
What Is Guidance UTI And Where Can You Access It?
Guidance® is a UTI test that uses PCR (Polymerase Chain Reaction) technology, which looks for genetic material in the urine rather than relying on growing specific bacteria in the way a urine culture does.
It’s important to understand that PCR testing typically uses a panel of selected organisms. It does not have the ability to look for all known organisms. For this reason, panel organisms are generally selected based on how likely they are to be involved in infection.
Guidance® looks for 45 pre-selected organisms that previous research has linked to urinary symptoms.
When we asked Dr Patel whether it’s likely that a patient may have infection caused by organisms that are not included on the panel, he highlighted the following:
|“From what I see right now, I think it's pretty rare. We're balancing the ability to not identify too many organisms which can lead to over-treating with antibiotics, whilst also trying to make sure we don't miss any bacteria. I think right now these 45 organisms are a good balance.”
We’ve covered Guidance® UTI testing in more detail, if you’d like to learn more about how it works.
If you’re interested in using Guidance® for further Interstitial Cystitis testing or recurrent UTI investigation you can make an appointment with Dr Patel, or any other clinic that utilizes the test.
How Guidance UTI Testing Differs From Other UTI Tests
PCR technology is not uncommon in the realm of recurrent UTI and Interstitial Cystitis testing. The main difference between the Guidance® test used by Dr Patel and other PCR tests, is its ability to make antibiotic recommendations based on real antibiotic susceptibility testing.
For a quick refresher, antibiotic susceptibility testing is conducted on live bacteria that have been grown from a patient sample in a lab.
Specific antibiotics are physically applied to each colony of bacteria (a single type) to see what happens. If the antibiotic prevents further growth it is considered to be an effective antibiotic to use.
Clinicians base their antibiotic recommendations on these outcomes.
Molecular testing technologies, such as PCR, do not typically allow for antibiotic susceptibility testing as the bacteria found are not grown (cultured). In contrast, Guidance® uses a combination of PCR technology and Pooled Antibiotic Susceptibility Testing (P-AST).
You could consider this a step up from the way antibiotic susceptibility testing is normally done. P-AST looks at the bacterial community as a whole rather than isolating each type on their own.
This is because the way bacteria respond to antibiotics when they are amongst their own kind differs to their behavior when they are combined with other types of bacteria. They can share antibiotic resistance traits and other characteristics and the outcome of antibiotic treatment can be vastly different.
You might be surprised to learn just how many urinary tract infections are polymicrobial (involve more than one type of bacteria).
Pathnostics has found that polymicrobial infection occurred in up to 68% of urine samples they evaluated. And 27% had at least four organisms!
|“Before we started using Guidance, patients would come in with symptoms of recurrent UTI but their urine culture was negative or the antibiotic treatment wasn’t effective. The limitations of urine culture meant I didn't have any other options to try to identify where the infection was coming from. Guidance is more targeted and the pooled sensitivity results mean we're finding fewer patients that we have to put on suppressive antibiotic regimens.”
How One Patient Benefited From Molecular Testing
“Just a few weeks ago, I saw a gentleman who had prostate cancer, was treated with radiation, and had significant urinary symptoms. We asked him to come through the office as opposed to the ER because of the COVID crisis. He’d already had a urinalysis and culture and the urinalysis showed just a little bit of blood, which wouldn’t be too unusual in someone who has had radiation therapy for prostate cancer. But he also had all the symptoms and signs of a urinary tract infection, even though his urinalysis and culture were negative.
We ordered a Guidance UTI test and found an organism that would never be picked up on the standard urine culture. We treated him appropriately with the correct antibiotic and he was cured. There are cases like these where everything points to urinary tract infection but if the patient went to the ER, or saw physicians who aren’t used to molecular based testing, they would be identified as someone who doesn’t have an infection despite their symptoms. If they had the ability to do a molecular urine test right from the beginning, they may have prevented this person from needing additional testing, seeing additional physicians and most importantly, help them recover a lot sooner.”
Could The Right Type Of Interstitial Cystitis Testing Identify Different Organisms?
We speak with many researchers and clinicians on the topic of the bladder microbiome and the organisms that should and should not be there.
The truth is, at this stage of the research, no one knows exactly what a healthy bladder microbiome should look like.
One thing that everyone can agree on is that the standard urine culture has never been able to identify even half of the organisms that can exist within the bladder.
In fact, there is much speculation around the role of E. coli. It is becoming evident that it is not the culprit in as many cases as previously suspected. E. coli is certainly the easiest bacterium to grow in standard culture and it is the fastest growing, but this has skewed our understanding of bladder infection.
Dr Patel’s own findings echo this.
|“The current media that the culture utilizes is perfect to grow E. coli but the anaerobic or slower growing fastidious organisms are not being picked up on urine culture. Fortunately, we're identifying these more and more with PCR-based urine tests and some of these organisms appear to create significant symptoms. Patients that have symptoms of a UTI but have previously tested negative, may find answers with PCR-based testing.”
On the other hand, Dr Patel also believes that molecular testing can also more accurately rule out infectious causes, and point to a need to pursue other things that could be causing urinary discomfort. So let’s take a look at some of those.
Sex, Constipation And Other Triggers For Bladder Symptom Flares
While testing is important to help identify or rule out infection, there are other risk factors and triggers that may need to be considered. Even when infection is identified and treated, if there is an underlying reason that the infection occurred in the first instance, this also needs to be addressed.
We chatted with Dr Patel about some of the factors that can increase the risk of UTI, or trigger an onset of symptoms. These include:
- Urinary incontinence
- Menopause or other hormonal changes
- Kidney stones
- Pelvic floor dysfunction
- Anatomical abnormalities
- Foreign objects such as Foley catheters
- Pelvic organ prolapse
UTIs, Constipation And Diet
|“If someone doesn't manage their bowels or are plagued with chronic constipation, that puts them at much higher risk for developing recurrent infections. This is for two main reasons. If they're not moving their bowels regularly, the bacterial counts in their colon go up exponentially. Second, if you think of your pelvis like a bowl, and the colon is filled with stool that hasn't been evacuated, your bladder doesn’t have the room to hold as much and won’t function properly.”
Dr Patel encourages people to maintain a good bowel regimen with stool softeners, fruits and vegetables.
This leads to the broader topic of diet and hydration. As far as the right level of hydration is concerned, Dr Patel suggests that a good rule of thumb is to drink enough fluids to ensure that urine output is similar in appearance to water.
He also suggests experimenting with diet to alleviate symptoms. In particular, it may be helpful for some people to monitor acidic foods to see if these directly impact symptoms.
UTIs After Sex
When it comes to sex as a trigger, it may not be as simple as testing the person with symptoms. In some cases, infection-causing bacteria is transferred from a partner during sex.
At Live UTI Free, we hear from many people who experience UTIs with a specific partner, and in these cases Dr Patel suggests that the partner should also be evaluated. Evaluation can include UTI and STI testing, along with an assessment of whether there may be underlying incontinence or other issues causing the recurrence.
Treatment For Recurrent UTI and Interstitial Cystitis Where Infection Is Identified
During our interview with Dr Patel, we learned that his particular approach focuses very much on identifying the underlying cause of the infection, rather than simply the infection itself.
Previous urologic history is considered first, such as:
- Inability to properly empty the bladder
- Evidence of scar tissue
- Stricture disease (narrowing of the urethra)
- Kidney stones
- Anatomical abnormalities
- Urinary incontinence (particularly common in females)
- Pelvic floor dysfunction
|“As a urologist, you should be an expert at trying to figure out why the infection happened in the first instance. It's not just about treating the infection, but it's treating the whole system. You can't just compartmentalize the recurrent urinary tract infection, we're actually treating the whole urinary tract itself.”
If infection is identified, antibiotic therapy will be started, based on the recommendations of the Guidance® test. In Dr Patel’s practice, an appropriate treatment approach is likely to be multi-faceted, as any underlying causes for infection are also addressed.
For instance, where bladder or pelvic floor dysfunction are identified, pelvic floor therapy is likely to be initiated. An experienced Nurse Practitioner at Dr Patel’s clinic works with patients on this.
Where yeast infection is present, or a patient is immunocompromised or very weak, antifungal therapy may be combined with antibiotic therapy.
For patients with poor renal function, or on dialysis, or with a permanent catheter in place, an antibiotic solution may be instilled directly into the bladder, rather than via oral antibiotic therapy.
Dr Patel often emphasizes the importance of utilizing all the tools available to treat the whole system.
Biofilms And The Urinary Microbiome: What It Means For Interstitial Cystitis Testing And Treatment
The National Institutes of Health (NIH) estimates around 80% of all bacterial infections in humans involve biofilms.
[Definition: 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.]
Bacteria can also be found living 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.
While this may now be known, it is not yet common knowledge among healthcare providers. This particular concept of biofilms is quite new in urology. Previously, biofilms in the bladder were typically only associated with catheters or other foreign objects.
The discovery of the urinary microbiome has led to a better understanding of how biofilms and IBCs may be implicated in recurrent UTI and Interstitial Cystitis.
|“All of this at least is new for a urologist. We always felt that urine should be sterile, to some degree, and that there wasn’t a biome of various bacteria working together to protect the environment within the bladder. We can learn a lot from our gastrointestinal colleagues who found this out decades ago.”
Molecular testing has helped provide more insight into organisms that can be found in the bladder. At this point in time, there is no test that can identify whether an organism found is causing symptoms or whether it is an unproblematic member of the greater urinary microbiome.
This is where pooled antibiotic sensitivity, that looks at how a bacterial community responds to antibiotics, may help.
|“We're learning this more and more. I think pooled sensitivity results have helped us better understand the differences between finding just one bacteria on your test results vs. two or three or more. A bacterium isolated by itself may be sensitive to an antibiotic, but in conjunction with other bacteria they’re able to become resistant. We see that there are synergies where some bacteria can work together and in some cases, they can work against the antibiotic therapy.”
Can Probiotics Help Restore Bladder Health?
Probiotics have been studied in relation to bladder health, with varied findings. We’ve covered some of the research into probiotics for recurrent UTI elsewhere on Live UTI Free.
It is not yet understood how probiotics that are orally ingested may reach the bladder, if at all. Given that the vaginal and urinary microbiomes are interconnected, it may be that probiotics inserted directly into the vagina have an impact on the urinary tract. Or perhaps balancing the digestive microbiome can result in benefits to both the vaginal environment and the urinary tract. More research is needed in all these areas.
|“I think taking probiotics may help replenish the urinary microbiome to some degree, but it's not going to be as targeted as it can be with the gut. It has been suggested that, similar to fecal matter transplant, at some point we may be able to take pre-selected bacteria that are useful for the urinary environment and transplant it into the bladder to repopulate those areas. The most important thing we have right now is to try and reduce the overuse of antibiotics by tailoring the antibiotic therapy better.”
According to Dr Patel, pooled antibiotic sensitivity has enabled physicians in his practice to reduce antibiotic treatment times by better tailoring antibiotic therapy for each individual. In many cases it has enabled the eradication of recurrent infections that were previously unsuccessfully treated.
About Dr Raj Patel, Urologist
Dr Raj Patel currently practices in Chicago, at Associated Urological Specialists, a practice that primarily specializes in robotic surgery and cancer. Alongside these specialties, however, is a strong focus on recurrent urinary tract infection.
As the availability of molecular testing in urology increased, Dr Patel and his colleagues became one of the few practices to use it for recurrent UTI patients.
The success achieved with the adoption of Guidance® UTI prompted the practice to set up a lab in Chicago in order to decrease the turnaround time for test results. UTI patients at Associated Urological Specialists can now receive their UTI and Interstitial Cystitis testing results in around 24 hours.
How To Make An Appointment With Dr Patel And His Experienced Colleagues At Associated Urological Specialists
Physicians at Associated Urological Specialists frequently work with recurrent UTI patients, and the use of molecular testing is practice wide.
You can make an appointment with Dr Patel or one of his colleagues, via the Associated Urological Specialists website.
New patients with any urological ailment are welcome, including those previously diagnosed with recurrent UTI or Interstitial Cystitis. Pediatric patients under the age of 16 are generally referred out to pediatric hospitals.
Appointments are available via telemedicine for local and international patients currently residing within the USA, enabling prompt care in all parts of the country. International patients residing outside the USA cannot currently book an appointment due to restrictions on the shipment of test kits and samples.
Patients can prepare for their first appointment by gathering any previous urinalysis and urine culture results, along with information about which antibiotics have been helpful and which have not. CAT scans, ultrasounds or other records from specialists will also help complete the picture.
The Future Of Recurrent UTI And Interstitial Cystitis Testing
At Live UTI Free, our mission is to push for better data, better testing and better treatment options for sufferers of recurrent and chronic UTI, and for those who have been diagnosed with Interstitial Cystitis.
We share information about clinicians that are actively working on the problem, to help provide insight and to demonstrate that there is hope.
|“I think the future holds a lot of hope for patients who have been told they have an infection and have taken an antibiotic, and the antibiotic doesn’t work, or patients who feel like they have an infection, but everyone tells them that they don't. With the use of PCR-based urine testing, I think we're going to see a lot more positive results and benefits to patients, as time goes on.”
To get answers to commonly asked questions about chronic and recurrent UTI, visit our FAQ page.