Links and Frequently Asked Questions
UTI Tests and Diagnostics
Some labs are able to test for specific organisms, however, the accuracy of testing is most dependent upon the technology used. Most labs utilize standard urine culture, which can be highly inaccurate. When a test is used that has limited capacity for identifying bacteria, yeast, fungi, or viruses , it may not provide any useful information to help guide treatment.
It can be important to consider the state of the urinary microbiome as a whole when dealing with a chronic or recurrent infection. Therefore, testing for specific organisms may not be as beneficial.
We often receive requests from patients in the community for educational materials to take to their doctor about difficult to diagnose UTI. We developed clinician education materials that you can share with your doctor. Along with this scientifically supported resource and diagnostic testing directory, you can also download a patient guide that can help you prepare for your appointment and encourage open dialogue between you and your clinician.
View the following videos for an overview of how to get the most out of these materials:
Interstitial cystitis (IC) is a diagnosis of exclusion. This means it is generally given when another cause has not yet been found. That also means it is entirely possible there is a cause that can be found using a different approach. Due to the limitations of dipsticks and standard urine cultures, many clinicians believe IC is over-diagnosed as a result of a failure to use all appropriate diagnostic methods available. We’ve covered recurrent UTI vs. interstitial cystitis in a few places on our site, including in our articles about UTI treatments and symptoms of a chronic or recurrent UTI.
We have listed a few chronic UTI practitioners on our site who are reporting good levels of success with their patients. These practitioners mainly treat patients who were previously diagnosed with interstitial cystitis, as well as those diagnosed with recurrent UTI. We don’t recommend specific clinicians, however, we do share information where we think it may be useful to our community. We may also be able to share further information about clinicians in your region. If you are interested, please get in touch.
For more information on specific approaches, you can learn more about how Dr. Raj Patel and Ruth Kriz, APRN treat patients with a diagnosis of IC.
Many patients dealing with a recurrent or persistent UTI are recommended a cystoscopy by their doctor. While cystoscopies are part of standard diagnostic workups in urology, they come with both benefits and risks. We’ve laid all of these out for you in our article on cystoscopies, to help guide you in making an informed decision. Â
This is a topic that’s been raised frequently in our UTI community, so we asked an expert about his experience with biopsying Hunner’s lesions (or ulcers). Some patients diagnosed with Hunner’s lesions have been found to have both microorganisms and biofilms inside the lesions, and have improved with antimicrobial treatment. While this is an exciting discovery for both clinicians and patients, no formal research has yet been completed on this topic. Â
UTI Treatment and Specialists
Advanced testing methods can be beneficial in identifying a difficult-to-diagnose UTI, but they are just the first step. It’s important to develop an understanding of your report and reach out to a clinician experienced in interpreting these types of tests.
If you don’t already have a practitioner familiar with chronic or recurrent UTI, you can download our physician resource to introduce your current practitioner to these technologies, or send us a direct message to request information about practitioners in your region. We will do what we can to help.
If you’re looking for instructions on how to interpret test results from one of the diagnostics companies we have covered on our site, please follow the links below:
Bladder fulguration is a procedure in which superficial layers of the bladder are cauterized, or burned, in order to remove abnormal tissues. Research has shown that these tissues likely contain bacteria and may be making it difficult for someone to fully eradicate an infection. We’ve covered all the details about fulguration, success rates, and finding a specialist in our fulguration article.
In addition to doing our own research, we also sat down with Dr. Philippe Zimmern, a urogynecologist and pelvic reconstruction surgeon who has been heavily involved in fulguration research. You can check out our video interview with Dr. Zimmern to hear his experience in treating chronic UTI patients with fulguration.
Other Causes for UTI Symptoms
Many urological and gynecological conditions have overlapping symptoms, making it difficult to determine if another condition is causing symptoms or further contributing to UTI. Along with outlining what are thought to be the most common bacterial causes of UTI, we’ve outlined 5 other common and less common causes of lower urinary tract symptoms to help you explore the possibility of other causes for your symptoms.
Keep in mind that while other conditions on their own can cause lower urinary tract symptoms, they can also coincide with or contribute to chronic or recurrent UTI.
UTI biofilms are sticky substances that adhere to the bladder wall and contain and protect bacterial communities. Because up to 80% of chronic or recurrent infections within the body involve biofilms, understanding and addressing biofilms can be important.
At this time, tests available to patients and clinicians are unable to specifically identify biofilms within urine samples. However, with Next-Generation Sequencing, organisms within a biofilm (that are released from the bladder while collecting a urine sample) are able to be identified. We’ve discussed biofilms further in our article on chronic bladder infection. Watch our video interview on biofilms, that discusses biofilms in the context of real photos and images.
Personal Support and Success Stories
Some patients who have recovered from chronic or recurrent UTI have shared their stories on our site. You can browse through the personal recovery stories to get a feel for what other UTI patients experienced and how they recovered. There are a variety of experiences, symptoms, and treatments shared, and you may find a story that resonates with you.
You can quickly access a handful of personal stories we’ve included here, with more published on the site:
Melissa’s recovery from recurrent UTI
How Annette found the right treatmentÂ
Juliet’s story about UTIs after sex
Meaghan’s pelvic floor dysfunction story
Browse all of our personal stories >>>>
Absolutely! Patients benefit from hearing from people who are no longer suffering from UTI. By sharing your personal story, you’ll provide hope to others and contribute to the UTI community.
If you’d like to share your UTI recovery or success story, just send us a message letting us know. It’s not necessary to have a draft written just yet, as we can help you with preparing your original content. Once you reach out, we’ll be certain to get in touch with you to discuss the details.
As awareness around recurrent and chronic UTI has grown, online support and education groups have also emerged. Depending on your country or region, you may be able to find a local online community of other patients navigating the issues of lower urinary tract symptoms. Facebook or Instagram are a great place to start. Below are some of the support groups we are aware of:
2. Embedded/Chronic UTI Support Group
3. Men and Women’s Chronic UTI Support Group
4. Women’s Chronic UTI Support Group
5. CUTIC LUTS Children’s Group
6. Investigation of Chronic Bladder Infections
7. ESBL and Resistant UTIs – Alternatives to Long Term Antibiotics
There is a strong network of chronic UTI sufferers in Australia and New Zealand, and you may be able to find a practitioner through either their facebook group or website.
We understand how difficult it can be to navigate through the complexities of chronic or recurrent UTI, as most of us have been there as well. In fact, our team member, Crystal, chatted with Marnie Simpson on this very topic, and you can watch their video on mental health and UTI. Connecting with people who are going through or have gone through similar experiences can be helpful, but sometimes more personalized care is needed.
One of our mental health advisors recommends finding a health psychologist who can provide support and help you navigate decisions around your healthcare. She has given us advice about how to find a health psychologist to help you during your chronic or recurrent UTI journey.
Staying Updated and Getting Involved
We appreciate your support! We’re always embarking on new projects to expand awareness and research around chronic and recurrent UTI, and your support allows us to continue pursuing those goals.
You can support Live UTI Free by contributing to projects that mean the most to you.
Please note that Live UTI Free is not a listed non-profit and is therefore not tax-deductible. However, we operate under the guidance of an ethics board and a central mission.
