Taking Control of Interstitial Cystitis/Bladder Pain Syndrome, also known as Painful Bladder Syndrome: A Guide to Treatment Options

What is Interstitial Cystitis/Bladder Pain Syndrome, also known as Painful Bladder Syndrome?

Let’s start with understanding what exactly IC/BPS is. According to the American Urological Association (AUA), IC/BPS is described as “an unpleasant sensation (pain, pressure and/or discomfort) associated with lower urinary tract symptoms of more than 6-week duration, in the absence of infection or other identifiable causes” (Clemens). Lower urinary tract symptoms include symptoms associated with evacuation of urine such as dysfunctional urination whether that is the inability to urinate, weakness of the urine stream, voiding for a prolonged duration, incomplete bladder emptying, dribbling of pee, urinary urgency, frequency, leakage, or waking up to urinate more than two times a night, referred to as nocturia (Lepor). Urinary urgency is the sudden need to urinate, and urinary frequency is the increased number of times needed for an individual to empty their bladder. Any of these symptoms with pain or discomfort around the bladder region which lies in the central, lower part of the abdomen that lasts more than 6 weeks may be diagnosed as IC according to this definition; in particular, the AUA definition notes that these symptoms cannot be associated with another infection or specified cause suggesting IC as a diagnosis that can be made from subjective reports from an individual with exclusion of other underlying cause.

There is also the East Asian guideline that divides IC/BPS into 3 categories, type 1-3. ‘Type 1 is hypersensitive bladder (i.e., BPS) with no proven bladder pathology or other confusable disease, type 2 is non-Hunner IC/BPS with mucosal bleeding after hydrodistention in the absence of Hunner lesions, and type 3 is Hunner IC (HIC)/BPS with Hunner lesions’ (Ueda). A Hunner lesion is “a distinctive inflammatory lesion presenting as a reddened mucosal area with fragile microvessels radiating towards a central scar” (Udea). This lesion would be found on the bladder wall. International Consultation of Interstitial Cystitis, Japan (ICICJ) holds a conference in Japan with scientists from all over the world where the definition along with other characteristics of IC have been greatly debated. Each part of the world seemed to be defining and treating patients with IC differently. In North America, Europe, and Asia there were differences in the way they were diagnosing the patients with some regions using cystoscopy to diagnose the disease and other regions making diagnoses based on the patient’s subjective symptoms and presentation. A cystoscopy is a procedure where a medical professional is able to use a lens to observe the bladder. Similar to an endoscopy or colonoscopy, a cystoscopy is a procedure that is used to visualize an organ system. At the ‘2018 meeting of the ICICJ, they concluded that HIC with significant inflammation in the bladder is clinically and pathologically distinct from non-Hunner IC/BPS and may be categorized as a separate disease entity called “Hunner lesion disease (HLD) distinct from other BPS conditions’ (Udea).

Taking into account the above information, you may now see how there is a wide range of information still being debated about the IC/BPS definitions. Uniformity across regions for acceptance of what IC/BPS is still lacking. As a physical therapist in New York City, most of my patients who come into our clinic suggesting they have been diagnosed with IC have been provided this diagnosis from their medical provider via a subjective history intake and based on the exclusion of infection or other known underlying cause. Maybe due to the high variability of defining factors for diagnosing IC/BPS, an article researching date using the Veterans Affairs Informatics and Computing Infrastructure found “a high rate of misdiagnosis of IC/BPS, with only 44.1% of patients with an ICD diagnosis of IC/BPS actually meeting diagnostic criteria after in depth chart review” (Skove).

If you have been diagnosed with IC/BPS, know that you are not alone. Individuals of any gender may experience this as IC/BPS affects between 3 to 8 million people assigned female at birth and between 1 and 4 million people assigned male at birth in the United States. People assigned female at birth have a higher prevalence of IC/BPS than people assigned male at birth (NIDDK). You may be at greater risk for IC/BPS if you are 30 or older or have another condition that causes pain (Cleveland Clinic Medical). In the clinic I generally see a representative population of patients with IC/BPS, typically people assigned female at birth over the age of 29.

Although there is not an exact known cause of IC/BPS at this time, there are several factors that may be involved. One thought is that the lining of the bladder may be dysfunctional. It’s found that many people with IC have symptoms of lower urinary tract infections around the time of onset. This may cause alterations in bacterial makeup within the bladder lining and lead to changes in bladder lining function. Another contributing factor may be increased sensitivity of the bladder nerve. There is a theory that the bladder lining may be intertwined with the sensory nerve of the bladder.

Another concept referred to as mast cell activation may be contributing to IC as well. Mast cell activation is when there is an increased inflammatory response in the body that can cause a variety of allergy related symptoms. When there is a great rise in these inflammatory markers, this can lead to a condition called mastocytosis. “Mastocytosis occurs in 30% to 65% of IC patients” (Sant). Lastly, there may be a connection to onset of autoimmune conditions or infection in patients with IC/BPS but more research is yet to be conducted as there is not a consistent connection of this with presenting patients.

Treatment Options Available:

If you have IC/BPS there are many angles from which you may try to target your symptoms to heal. Below are some interventions and approaches you may consider attempting:

Let’s start with physical therapy. Physical therapy can be a good place to start. Here, you may try working with a pelvic floor physical therapist specifically to work on decreasing areas of muscle, superficial connective tissue, and deep connective tissue restrictions. Muscle tightness may occur as a response to pain. A therapist could evaluate your mobility around the pelvis and inside of the pelvis to find areas that may be contributing to your pain. A pelvic exam could be conducted to assess the three different layers of pelvic floor muscles and to see the muscle mobility, and length. An external exam can be performed to assess the outermost layers of muscles and an internal pelvic exam, which is a digital exam, can be performed to assess the deeper layers of muscles. The second layer of muscles have more direct connections to the urethra while the deepest layer of pelvic muscles lie closest to the bladder itself. Pressure, restriction, pain or difficulty with coordinating muscle activity around these areas are all factors your provider would consider assessing and treating.

Your pelvic floor physical therapist can also work with you to assess and treat connective tissue. Connective tissue is a spider web-like tissue that envelops our body. There are many layers of it and if it is tight, it may be adding pressure around or over the bladder. In physical therapy, you can work with a trained therapist who can manually assess and treat this system if restricted. A variety of manual therapy treatment techniques may be used or, mobility and lengthening based stretches and exercises can be used to help decrease areas of tension or restriction. In physical therapy, we may also try to address symptoms of pain with a device called a TENS unit. This stands for transcutaneous electrical nerve stimulation. One of the ways it can be used is to help decrease the level of sensitivity around the bladder to reduce bladder pain symptoms. Following this protocol for a period of weeks may help relieve pain symptoms.

Some other non invasive treatment options include trying to track and adjust dietary factors. You can try keeping a log of food and drink intake to see if certain things are irritating your bladder and may be exacerbating your symptoms. Common trigger foods and drinks to consider include: caffeinated beverages such as coffee or soda, alcohol, citrus foods/fruits, artificial sweeteners, acidic foods, or spicy foods. If you do find that you react to certain food/drink you can try consulting your doctor for advice on management of this. Sometimes, patients are recommended to take an antacid to help decrease acid levels and help ease symptoms. You may also consider working with a nutritionist or dietician specialized in IC. A specialist would be able to help you track food/drink in a healthy way as this task may quickly become overwhelming and complicated especially if it is hard to identify your specific triggers. They may also help you find ways to manage your food/drink flares while finding food and drink options that feel better for you, allowing you to maintain a healthy diet.

Commonly used drugs to treat IC/BPS include non-steroidal anti-inflammatory drugs (NSAIDs) tricyclic antidepressants, antihistamines, or Elmiron. NSAIDs are typically used to help relieve pain and inflammation. Tricyclic antidepressants can help promote relaxation of the bladder, helping to decrease lower urinary tract symptoms such as urinary frequency. They can also help by having an effect on helping relieve pain symptoms. Antihistamines may be prescribed to you to tackle an underlying histamine reaction experience that may be contributing to your IC/BPS. Lastly, Elmiron is an FDA approved drug specifically devised to treat IC which you and your doctor may discuss trying. Elmiron usually takes three to six months of use prior to patients experiencing notable change. This drug acts on the bladder wall to help decrease irritation. An alternate option you may consider after consulting your doctor is getting a bladder installation. This is a procedure where a medication is inserted into your bladder via the route through your urethra. Discussing these options with your provider is essential to help identify what option is best for you and to consider potential side effects or interactions prior to usage.

If the above changes and treatments do not work, surgery may be an option but all above options should be exhausted prior to consideration of a surgical treatment. Sacral nerve stimulation may be considered. This is a form of treatment that involves implantation of a device into the buttock region. This device can be used to alter messages sent to the bladder and pelvic region by altering the inputs from the nerves that exit this region. Nerves that exit the sacral region have connections to the bladder, and pelvic region and this electrical input can adjust sensation to these areas to help manage symptoms. There is typically a trial test period for sacral modulation prior to permanent implantation of the device. If other treatments fail, other surgical methods that may be considered involve removal or treatment of ulcers around the bladder or alteration of the physical walls of the bladder itself to increase its capacity.