By Jason J. Kutch, PhD and Stephanie Prendergast, MPT, PHRC West Los Angeles
Interstitial Cystitis/ Bladder Pain Syndrome (BPS) is a pelvic pain syndrome that is characterized by urgency/frequency and pelvic pain, affecting up to 7.9 million vagina owners and roughly 10% of penis owners in the United States. It is a clinical diagnosis, meaning that there are no diagnostic tests needed or validated to confirm or refute the presence of IC/PBS. In layman’s terms, the diagnosis is made based on symptom description.
If a diagnosis is made by symptom description alone how do we actually know the underlying cause and how do we deliver appropriate treatment?
This question is the reason I teamed up with neuroscientist and researcher Jason Kutch, PhD to discuss his past and current work on IC/PBS. We thought it would be helpful to have suffering patients and curious colleagues better understand the current situation from a clinician/research team perspective on IG Live. This post summarizes a few of our key points!
Like many other pelvic pain syndromes, we know so much more about IC/PBS than we did even five years ago, let alone 20 years ago. Previously all people with irritative bladder symptoms were lumped into one category and it was assumed all of these patients had Hunner’s lesions on the lining of the bladder wall. Today we know that Hunner’s lesions IC/PBS only accounts for 10% of the people with this diagnosis. So what about the other 90%? What does this mean for patients? It means good news! We know there are also other types of IC/PBS thanks to the Multidisciplinary Approach to the Study of Chronic Pelvic Pain (MAPP) Research Network!
What is MAPP?
The MAPP project is a multi-site endeavor to study clinical phenotypes for urologic pelvic pain, including IC/PBS. Multiple sites exist across the United States and the work done at these sites have significantly advanced our knowledge of painful bladder syndromes.
What is Phenotyping?
In basic terms, phenotyping means characterizing the underlying cause of the irritative bladder symptoms. Hunner’s lesions are one IC/PBS phenotype. The MAPP project has also identified pelvic floor dysfunction as an IC/PBS phenotype. In clinical practice we also see hormonally mediated causes of irritative bladder symptoms, in both premenopausal and menopausal women. Dr. Kutch’s research has identified alterations in brain structure in people with IC/PBS, as well as differences in neural connectivity and brain function in patients versus controls. There is evidence for a phenotype that appears to have heightened sensitivity to a wide array of sensations.
This study compared fMRI brain scans in women with IC/PBS to women without symptoms. The results showed that women with IC/PBS had brain alterations in a specific region of the brain that also controls pelvic floor muscles. Women who had pain with bladder filling had different brain function than women who had symptoms but did NOT Have pain with bladder filling.
This study investigated the use of Transcranial Magnetic Stimulation (TMS) to the brain to alter the resting tone of pelvic floor muscles. The study showed it is possible to do this and is the basis for Dr. Kutch’s current research study!
Transcranial Magnetic Stimulation (TMS) as a treatment option for IC/PBS
TMS is an FDA-approved, noninvasive treatment for anxiety and depression. Therefore, it makes sense to apply it to other conditions such as pelvic pain syndromes now that we know alterations in our brain structure exist in patients versus people without symptoms. Currently, Dr. Kutch is enrolling patients in a clinical trial at USC to study the effect of TMS on women with a diagnosis of IC/PBS.
We need your help!
If you are a female over the age of 18 with a diagnosis of IC/PBS and you would like more information or to be enrolled in this study please contact Giselle Garcia: Giselle.Garcia@med.usc.edu
This is an official link to the study. Participants will be compensated for their time.
Take Home Points
We must understand why someone has their symptoms to be able to deliver effective treatment. For example, if someone has Hunner’s Lesions they may be a good candidate for bladder instillations. If someone has pelvic floor dysfunction as a cause of their symptoms they may not be a great candidate for bladder instillations but they will likely benefit from pelvic floor PT. Many vagina owners suffer from hormone deficiencies, another subset that is successfully treated with medical management. Patients with heightened sensitivity may benefit from drugs that act on the central nervous system in addition to the other therapies. The most important take home message: people can have overlapping phenotypes and pelvic pain specialists and pelvic floor physical therapists can help people identify their root cause.
Want to hear more? Check out our full IG Live Discussion.
Are you unable to come see us in person? We offer virtual physical therapy appointments too!
Due to COVID-19, we understand people may prefer to utilize our services from their homes. We also understand that many people do not have access to pelvic floor physical therapy and we are here to help! The Pelvic Health and Rehabilitation Center is a multi-city company of highly trained and specialized pelvic floor physical therapists committed to helping people optimize their pelvic health and eliminate pelvic pain and dysfunction. We are here for you and ready to help, whether it is in-person or online.
Virtual sessions are available with PHRC pelvic floor physical therapists via our video platform, Zoom, or via phone. For more information and to schedule, please visit our digital healthcare page.
In addition to virtual consultation with our physical therapists, we also offer integrative health services with Jandra Mueller, DPT, MS. Jandra is a pelvic floor physical therapist who also has her Master’s degree in Integrative Health and Nutrition. She offers services such as hormone testing via the DUTCH test, comprehensive stool testing for gastrointestinal health concerns, and integrative health coaching and meal planning. For more information about her services and to schedule, please visit our Integrative Health website page.
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