Painful Bladder Problems, Interstitial Cystitis

Interstitial Cystitis (IC) or Bladder Pain Syndrome (BPS) is a chronic, oftentimes severely debilitating disease of the urinary bladder. Of unknown cause, it is characterized by: pain associated with the bladder, pain associated with urination (dysuria), urinary frequency (as often as every 10 minutes), urgency, and/or pressure in the bladder and/or pelvis. The disease has a profound impact on quality of life. A study concluded, "the impact of interstitial cystitis on quality of life is severe and debilitating", stating that the quality of life of interstitial cystitis patients resembles that of a person on kidney dialysis or suffering from chronic cancer pain. The condition is officially recognized as a disability. It is not unusual for patients to have been misdiagnosed with a variety of other conditions, including: overactive bladder, urethritis, urethral syndrome, trigonitis, other generic terms used to describe frequency/urgency symptoms in the urinary tract.

IC/BPS affects women of all cultures, socioeconomic backgrounds, and ages. Although the disease previously was believed to be a condition of menopausal women, growing numbers of women are being diagnosed in their twenties and younger. IC/BPS is not a rare condition, early research suggested that IC/BPS prevalence ranged]

Signs and symptoms

The symptoms of IC/BPS are often misdiagnosed as a "common" bladder infection (cystitis) or a UTI. However, IC/BPS has not been shown to be caused by a bacterial infection, and the mis-prescribed treatment of antibiotics is ineffective. The symptoms of IC/BPS may also initially be attributed to endometriosis and uterine fibroids. The most common symptom of IC/BPS is pain, which is found in 100% of patients, frequency (82% of patients) and nocturia (62%). In general, symptoms are:

  • Painful urination
    • Pain that is worsened with bladder filling and/or improved with urination.[9]
    • Pain that is worsened with a certain food or drink.
    • Some patients report dysuria (burning sensation in the urethra when urinating).
  • Urinary frequency (as often as every 10 minutes), urgency, and pressure in the bladder and/or pelvis.
  • Some patients report nocturia (waking at night to urinate), hesitancy (needing to wait for the stream to begin, often caused by pelvic floor dysfunction and tension), pain with sexual intercourse, and discomfort and difficulty driving, travelling or working.

During cystoscopy, 5 to 10% of patients are found to have Hunner's ulcers. Far more patients may experience a very mild form of IC/BPS, in which they have no visible wounds in their bladder, yet struggle with symptoms of pain, frequency and/or urgency. Still other patients may have discomfort only in their urethra, while others struggle with pain in the entire pelvis. For the most part, people with interstitial cystitis will either have lots of pain and very little frequency or they'll have lots of frequency and very little pain.

Association with other conditions

Some people with IC/BPS suffer from other conditions that may have the same etiology as IC/BPS. These include: irritable bowel syndrome (IBS), fibromyalgia, chronic fatigue syndrome, endometriosis, vulvodynia, chemical sensitivities and anxiety disorder. The presence of endometriosis has a strong association with typical IC findings on cystoscopy including glomerulations, ulcers, and reduced bladder capacity.

Causes of Interstitial Cystitis

The cause of IC/BPS is unknown, though several theories have been put forward (these include autoimmune theory, nerve theory, mast cell theory, leaky lining theory, infection theory and a theory of production of a toxic substance in the urine. Other theories are neurologic, allergic, genetic and stress-psychological. In addition, recent research shows that IC patients may have a substance in the urine that inhibits the growth of cells in the bladder epithelium. An infection may then predispose those patients to get IC. Regardless of the origin, it is clear that the majority of IC/BPS patients struggle with a damaged urothelium, or bladder lining. When the surface glycosaminoglycan (GAG) layer is damaged (via a urinary tract infection (UTI), excessive consumption of coffee or fizzy drinks, traumatic injury, etc.), urinary chemicals can "leak" into surrounding tissues, causing pain, inflammation, and urinary symptoms. Oral medications like pentosan polysulfate and medications that are placed directly into the bladder via a catheter sometimes work to repair and rebuild this damaged/wounded lining, allowing for a reduction in symptoms.

Anxiety and Stress - Numerous studies have noted the link between interstitial cystitis, anxiety, stress, hyperresponsiveness, and panic

Autoimmune - The body's immune system attacks the bladder. Biopsies on the bladder walls of people with IC usually contain mast cells. Mast cells gather when an allergic reaction is occurring. They contain histamine packets. The body identifies the bladder wall as a foreign agent, and the histamine packets burst open and attack. Thus, the body attacks itself (basis of autoimmune disease.

Genes & Leaky Bladder Lining - Some genetic subtypes, in some patients, have been linked to the disorder. There is an antiproliferative factor secreted by the bladders of IC/BPS patients which inhibits bladder cell proliferation, thus possibly causing the missing bladder lining. Most literature supports the belief that IC's symptoms are associated with a defect in the bladder epithelium lining which allows irritating substances in the urine to penetrate into the bladder — essentially, a breakdown of the bladder lining (also known as Adherence Theory). The deficiency in this glycosaminoglycan (GAG) layer, on the surface of the bladder results in increased permeability of the underlying submucosal tissues. GP 51 is a Urinary Glycoprotein that functions as a protective barrier to the bladder wall. A study evaluated urinary GP 51 levels in patients with and without interstitial cystitis and found that these levels are significantly reduced in patients with the disease.

Mast Cells - were once thought to be responsible for allergic reactions. Mast cells release histamine. Histamine causes pain, swelling, scarring and prevents healing. Current evidence from clinical and laboratory studies confirms that mast cells play a central role in IC/PBS. Research has shown that there is proliferation of nerve fibers in the bladders of IC patients that does not exist in the bladders of people who have not been diagnosed with IC.

Nerve Damage Theory - An unknown toxin or stimulus causes nerves in the bladder wall to fire uncontrollably. When they fire, they release substances called neuropeptides that induce a cascade of reactions that cause pain in the bladder wall.

Diagnosis of IC

Diagnosis has been greatly simplified in recent years with the development of two new methodologies. The Pelvic Pain Urgency/Frequency (PUF) Patient Survey, created by C. Lowell Parsons, is a short questionnaire that will help doctors identify if pelvic pain could be coming from the bladder. The KCl test, also known as the potassium sensitivity test, uses a mild potassium solution to test the integrity of the bladder wall. Though the latter is not specific for IC/BPS, it has been determined to be helpful in predicting the use of compounds, such as pentosan polysulphate, which are designed to help repair the GAG layer.

The previous gold standard test for IC/BPS was the use of hydrodistention with cystoscopy. Researchers, however, determined that this visual examination of the bladder wall after stretching the bladder was not specific for IC/BPS and that the test, itself, can contribute to the development of small glomerulations (that is, petechial hemorrhages) often found in IC/BPS. Thus, a diagnosis of IC/BPS is one of exclusion, as well as a review of clinical symptoms. In 2009, Japanese researchers identified a urinary marker called phenylacetylglutamine that could be used for early diagnosis.

Treatment of IC


As recently as a decade ago, treatments available were limited to the use of astringent instillations, such as chlorpactin (oxychlorosene) or silver nitrate, designed to kill "infection" and/or strip off the bladder lining. Rather, IC/BPS treatment is typically multi-modal, including the use of a bladder coating, an antihistamine to help control mast cell activity and a low dose antidepressant to fight neurogenic inflammation.

Pentosan polysulfate - Oral pentosan polysulfate is believed to provide a protective coating in the bladder, but some studies have found that a minority of patients do respond to pentosan polysulfate.

Amitriptyline can reduce symptoms in patients with IC/BPS. Patient overall satisfaction with the therapeutic result of amitriptyline was excellent or good in 46%. Amitriptyline may be beneficial in doses greater than 50 mg.

DMSO (Dimethyl Sulfoxide), a wood pulp extract, is the only approved bladder instillation for IC/BPS yet it is much less frequently used nowadays. This is because the approved dosage of a 50% solution of DMSO had the potential of creating irreversible muscle contraction. However, a lesser solution of 25% was found to be reversible. Long term use is questionable, at best, particularly given the fact that the method of action of DMSO is not fully understood.

Rescue instillations - More recently, the use of a "rescue instillation" composed of pentosan polysulfate or heparin, sodium hyaluronate, lidocaine and sodium bicarbonate, has generated considerable excitement in the IC/BPS community because it is the first therapeutic intervention that can be used to reduce a flare of symptoms. Published studies report a 90% effectiveness in reducing symptoms. Sometimes these rescue instillations are given on a regular basis for treatment. It is important to note that this is off-label use for both pentosan polysulfate and heparin, as neither medicine has been approved to be used this way.

Bladder Coatings - Other bladder coating therapies include Cystistat (sodium hyaluronate) and Uracyst (chondroitin). They are believed to replace the deficient GAG layer on the bladder wall. Like most other intravesical bladder treatments, this treatment may require the patient to lie for 20 – 40 minutes, turning over every ten minutes, to allow the chemical to 'soak in' and give a good coating, before it is passed out with the urine.


It has been reported that most (but not all) people with IC find that certain foods make their symptoms worse. In 2007, a study done at Long Island University, USA reported that over 90 percent of interstitial cystitis patients experience an increase in symptoms when they consume certain foods and beverages, especially coffee, tea, soda, alcoholic beverages, citrus fruits and juices, artificial sweeteners and hot pepper. The challenge with diet triggers is that they vary from person to person: the best way for a person to discover his or her own triggers is to use an elimination diet. The foundation of treatment is to modify the diet to help patients avoid those foods which can further irritate the damaged bladder wall.

Pain that worsened with a certain food or drink and/or worsened with bladder filling and/or improved with urination was reported by 97% of patients, in one study. Avoiding citrus fruits, tomatoes, coffee, tea, carbonated and alcoholic beverages, spicy foods, artificial sweeteners, and vitamin C has been recommended. It also found that many patients had reduced sensitivity to trigger foods if they consumed calcium glycerophosphate and/or sodium bicarbonate.

Bladder distension a procedure which stretches the bladder capacity, done under general anaesthesia) has shown some success in reducing urinary frequency and giving pain relief to patients.,[52] However, many experts still cannot understand precisely how this can cause pain relief. Unfortunately, the relief achieved by bladder distensions is only temporary (weeks or months) and consequently, it is not really viable as a long-term treatment for IC/BPS.

Surgery - Surgical interventions are rarely used for IC/BPS, non is totally effective. Surgical intervention is very unpredictable for IC/BPS, and is considered a treatment of last resort when all other treatment modalities have failed and pain is severe. Some patients who opt for surgical intervention continue to experience pain after surgery.

Pain control Pain control is usually necessary in the IC/BPS treatment plan. The pain of IC/BPS has been rated equivalent to cancer pain and may lead to central sensitization if untreated.

Neuromodulation - Neuromodulation can be successful in treating IC/BPS symptoms, including pain. Electronic pain-killing options include stimulators have also been used, with varying degrees of success. Percutaneous sacral nerve root stimulation (PNS) was able to produce statistically significant improvements in several parameters, including pain

Acupuncture - there are some good results reported when acupuncture is combined with other treatments. In others, no benefit has been noted.

Prognosis - A survey showed that among people with interstitial cystitis:

  • 40% were unable to work
  • 27% were unable to have sex due to pain
  • 27% had marriage breakdown
  • 55% contemplated suicide
  • 12% had attempted suicide