Interstitial Cystitis or Painful Bladder Syndrome is an unpleasant sensation (pain, pressure, discomfort) perceived to be related to the urinary bladder, associated with lower urinary tract symptoms of more than 6 weeks’ duration, in the absence of infection or other identifiable causes.
People with IC have inflamed or irritated bladder walls, which can cause scarring and stiffening of the bladder. According to the cystoscopy appearance, we distinguish two main IC groups:
Non-ulcerative (90%): the cystoscopy shows pinpoint haemorrhages in the bladder wall, also known as glomerulations. However, these are not specific to IC, and any bladder inflammation may have these lesions.
Ulcerative (5-10%): these patients usually have Hunner’s ulcers or patches, which are red, bleeding areas on the bladder wall.
While it is prevalent in women (up to 12% of all women in the United States), IC is rare in children. In men, symptoms of IC may be confused with other common conditions like chronic prostatitis.
The exact cause of IC is unknown. However, there are several hypotheses regarding why IC/PBS may occur. We suspect a possible multifactorial process leading to the bladder damage. The result is microscopic wall gaps, where urine particles such as potassium and acidic ions may leak into the bladder wall making inflammation/irritation of the underlying sensitive nerve branches and causing chronic nerve pain/irritative bladder symptoms (frequent and urgent urination). According to this theory, the damage may occur with (risk factors for IC):
Interstitial Cystitis and Bladder Pain Syndrome may also be associated with chronic conditions such as fibromyalgia, myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS) and irritable bowel syndrome (IBS).
All these symptoms may have different severity among patients. According to the prevalence of one sign to others, we can identify different subtypes (phenotypes) of IC/BPS.
The description of pain in IC/BPS deserves a thorough discussion. With pelvic pain, we generally define unpleasant sensory and emotional experiences associated with bladder inflammation. It occurs mainly in the lower abdomen or the perineum (the area between anus and vagina or scrotum). It intensifies as the urinary bladder fills or empties. This pain might be steady or intermittent. It can be a sharp stabbing in a specific spot or a dull ache spread out. The pain is usually chronic, so that recurs frequently or lasts for a longer time. In females often, the pain occurs during sexual intercourse (dyspareunia).
Using a visual analogue scale helps to describe the intensity of pain. For example, the patient can rate it with a number from “0” to “10”. “Zero” means no pain, while “10” means the worst pain ever felt.
0 to 1
2 to 3
4 to 5
6 to 7
8 to 9
Intense-very severe pain
Worst pain imaginable
Table 1: Visual Analog Scale to rate the pelvic pain
The patient can use this 0-10 rating scale to describe:
However, it can be hard to remember the details every time pain occurs. It is helpful to use a pain diary to describe and record the pain episodes when they occur.
Date and time
Pain score (0-10)
Where pain is and how it feels*
What I was doing when it started
Pain score 1 hour after medication
How long does the pain last
No-drugs techiques to relief the pain^
Table 2: Pain diary
Patients may void insignificant amounts every 20-30 minutes and even at night. We can only imagine how symptoms might impact daily activities and night sleep.
The feeling of a sudden urge to urinate is challenging to control.
There is no standardized test for interstitial cystitis/painful bladder syndrome diagnosis. The symptoms make the diagnosis in the Interstitial Cystitis or Blabber Pain Syndrome. When the patient complains about pelvic pain, or irritative bladder symptoms (frequent and urgent urination), we must rule out other treatable conditions with similar symptoms before considering a diagnosis of IC/BPS. Once we exclude different diseases, we treat patients for presumed IC.
There is a list of confoundable chronic diseases we must rule out before starting to treat IC/BPS:
Then, the whole diagnostic is a multidisciplinary workup that involves the urologist and gynaecologist. Moreover, since food intolerance and IBS may be concomitant, the gastroenterologist may be included in the patient’s evaluation.
Gynaecology referral to exclude:
When we rule out all confoundable diseases, we may consider some diagnostics to confirm a presumed IC/BPS.
Two symptom screening questionnaires are available: the O’Leary-Sant Symptom and Problem Index and the Pelvic Pain and Urgency/Frequency Symptom Scale (PUF).
The examination includes a bimanual (vaginal-lower abdominal) pelvic examination in women and rectal examination in men. Assessment of patients with interstitial cystitis/painful bladder syndrome may have pelvic floor spasms, rectal spasms, or suprapubic tenderness. Women may feel tenderness in the anterior vaginal wall and bladder base. After physical examination, we can suspect two possible confoundable diseases (pudendal-nerve entrapment and pelvic-muscle-related pain).
The Potassium Chloride Sensitivity Test (PST), or Parson’s test, consists of a bladder instillation of potassium chloride through a urinary catheter. The PST is no longer widely used because of its low sensitivity and specificity and because it could be painful and trigger a pelvic pain crisis.
We can install a local anaesthetic solution in a symptomatic patient through a catheter. If the bladder is the source of pain, the patient will experience significant pain relief.
Cystoscopy is a mild invasive diagnostic that allows us to visualize the internal bladder walls directly and document the bladder inflammation and its severity (the presence of ulceration). During cystoscopy, we can perform the hydrodistension, which consists of filling the bladder with water until the maximum bladder capacity to detect mucosal changes considered typical of IC/BPS. Moreover, hydrodistension can aid in evaluating maximal bladder capacity (about 1,150 mL in healthy adults). The maximum bladder capacity is low or very low in severe symptomatic cases. This finding may help us to confirm IC/IBS.
However, due to the low level of evidence, we do not recommend cystoscopy in all cases (in mildly symptomatic patients, for example).
We do not perform bladder biopsies routinely. We do it if we suspect symptomatic bladder cancer (carcinoma in-situ).
Urodynamics are not required but may help differentiate interstitial cystitis/painful bladder syndrome from detrusor overactivity.
We do not know the cause of IC/BPS. That is why the therapy includes an empiric combination of treatments to improve the symptoms and the quality of life. This treatment strategy includes lifestyle modifications (stress management), dietary restrictions, food supplements, medications, intravesical treatments and complementary therapies. It is essential to know that we tailor the treatment strategy to the patient, and the response to a cure is variable and not reproducible among different patients.
Some research strongly suggests a relationship between symptoms and diet. However, more than recommending a diet to help relieve symptoms of IC/BPS, we should focus on the restriction of known trigger foods. Some patients are aware of symptoms triggering or worsening after eating certain foods. Coffee, soda, alcohol, tomatoes, hot and spicy foods, chocolate, caffeinated beverages, citrus juices and drinks, monosodium glutamate, and high-acid foods can trigger or worsen IC symptoms. Some people also note that their symptoms get worse after eating or drinking products with artificial sweeteners like soft drinks. The diet diary may help patients link the symptoms flares to specific foods.
The elimination diet is an eating plan that stops certain foods and drinks one at a time. By removing certain foods for a period and then reintroducing them during a “challenge” period, we can learn which foods are causing symptoms.
Antiacids taken with meals reduce the urine acidity related to some foods and may relieve the symptoms.
We must assess the patient for food intolerance and allergy which might trigger IC/BPS symptoms.
Pentosan polysulfate sodium (Elmiron) is the only oral therapy approved by the US Food and Drug Administration (FDA) for treating interstitial Cystitis.
Other medications are only empiric and include:
Dimethyl sulfoxide is the only FDA-approved intravesical agent to treat painful symptoms of interstitial cystitis/painful bladder syndrome. The bladder irrigation with 50% dimethyl sulfoxide solution is used for six to eight weeks to relieve moderate to severe pain symptoms of IC/BPS.
We can use Pentosan polysulfate sodium (Elmiron) in bladder instillations alone or combined with the oral formulation.
Heparin and hyaluronic acid (combined with chondroitin sulfate) are other possible medications used for intravesical therapy.
Sacral nerve stimulation may be effective only for frequency associated with IC/BPS but not for pain relief.
We can obtain better results in terms of pain control with pudendal nerve stimulation.
We use physical therapy in select cases of IC/BPS, especially for treating associated pelvic floor muscle spasms.