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: [email protected]
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.
Check out our IC/PBS Resource List with blogs, videos, and success stories!
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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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FAQ
What are pelvic floor muscles?
The pelvic floor muscles are a group of muscles that run from the coccyx to the pubic bone. They are part of the core, helping to support our entire body as well as providing support for the bowel, bladder and uterus. These muscles help us maintain bowel and bladder control and are involved in sexual pleasure and orgasm. The technical name of the pelvic floor muscles is the Levator Ani muscle group. The pudendal nerve, the levator ani nerve, and branches from the S2 – S4 nerve roots innervate the pelvic floor muscles. They are under voluntary and autonomic control, which is a unique feature only they possess compared to other muscle groups.
What is pelvic floor physical therapy?
Pelvic floor physical therapy is a specialized area of physical therapy. Currently, physical therapists need advanced post-graduate education to be able to help people with pelvic floor dysfunction because pelvic floor disorders are not yet being taught in standard physical therapy curricula. The Pelvic Health and Rehabilitation Center provides extensive training for our staff because we recognize the limitations of physical therapy education in this unique area.
What happens at pelvic floor therapy?
During an evaluation for pelvic floor dysfunction the physical therapist will take a detailed history. Following the history the physical therapist will leave the room to allow the patient to change and drape themselves. The physical therapist will return to the room and using gloved hands will perform an external and internal manual assessment of the pelvic floor and girdle muscles. The physical therapist will once again leave the room and allow the patient to dress. Following the manual examination there may also be an examination of strength, motor control, and overall biomechanics and neuromuscular control. The physical therapist will then communicate the findings to the patient and together with their patient they establish an assessment, short term and long term goals and a treatment plan. Typically people with pelvic floor dysfunction are seen one time per week for one hour for varying amounts of time based on the severity and chronicity of the disease. A home exercise program will be established and the physical therapist will help coordinate other providers on the treatment team. Typically patients are seen for 3 months to a year.
What is pudendal neuralgia and how is it treated?
Pudendal Neuralgia is a clinical diagnosis that means pain in the sensory distribution of the pudendal nerve. The pudendal nerve is a mixed nerve that exits the S2 – S4 sacral nerve roots, we have a right and left pudendal nerve and each side has three main trunks: the dorsal branch, the perineal branch, and the inferior rectal branch. The branches supply sensation to the clitoris/penis, labia/scrotum, perineum, anus, the distal ⅓ of the urethra and rectum, and the vulva and vestibule. The nerve branches also control the pelvic floor muscles. The pudendal nerve follows a tortuous path through the pelvic floor and girdle, leaving it vulnerable to compression and tension injuries at various points along its path.
Pudendal Neuralgia occurs when the nerve is unable to slide, glide and move normally and as a result, people experience pain in some or all of the above-mentioned areas. Pelvic floor physical therapy plays a crucial role in identifying the mechanical impairments that are affecting the nerve. The physical therapy treatment plan is designed to restore normal neural function. Patients with pudendal neuralgia require pelvic floor physical therapy and may also benefit from medical management that includes pharmaceuticals and procedures such as pudendal nerve blocks or botox injections.
What is interstitial cystitis and how is it treated?
Interstitial Cystitis is a clinical diagnosis characterized by irritative bladder symptoms such as urinary urgency, frequency, and hesitancy in the absence of infection. Research has shown the majority of patients who meet the clinical definition have pelvic floor dysfunction and myalgia. Therefore, the American Urologic Association recommends pelvic floor physical therapy as first-line treatment for Interstitial Cystitis. Patients will benefit from pelvic floor physical therapy and may also benefit from pharmacologic management or medical procedures such as bladder instillations.
Who is the Pelvic Health and Rehabilitation Team?
The Pelvic Health and Rehabilitation Center was founded by Elizabeth Akincilar and Stephanie Prendergast in 2006, they have been treating people with pelvic floor disorders since 2001. They were trained and mentored by a medical doctor and quickly became experts in treating pelvic floor disorders. They began creating courses and sharing their knowledge around the world. They expanded to 11 locations in the United States and developed a residency style training program for their employees with ongoing weekly mentoring. The physical therapists who work at PHRC have undergone more training than the majority of pelvic floor physical therapists and as a result offer efficient and high quality care.
How many years of experience do we have?
Stephanie and Liz have 24 years of experience and help each and every team member become an expert in the field through their training and mentoring program.
Why PHRC versus anyone else?
PHRC is unique because of the specific focus on pelvic floor disorders and the leadership at our company. We are constantly lecturing, teaching, and staying ahead of the curve with our connections to medical experts and emerging experts. As a result, we are able to efficiently and effectively help our patients restore their pelvic health.
Do we treat men for pelvic floor therapy?
The Pelvic Health and Rehabilitation Center is unique in that the Cofounders have always treated people of all genders and therefore have trained the team members and staff the same way. Many pelvic floor physical therapists focus solely on people with vulvas, this is not the case here.
Do I need pelvic floor therapy forever?
The majority of people with pelvic floor dysfunction will undergo pelvic floor physical therapy for a set amount of time based on their goals. Every 6 -8 weeks goals will be re-established based on the physical improvements and remaining physical impairments. Most patients will achieve their goals in 3 – 6 months. If there are complicating medical or untreated comorbidities some patients will be in therapy longer.