Interstitial Cystitis (IC), Incidence of IC

People with Interstitial Cystitis (IC) have to void frequently and often experience pain in the pubic or genital region. Causes, description, diagnosis and treatment described. Physician-monitored; written for consumers.

Interstitial cystitis (IC) is a chronic inflammatory bladder disorder that produces frequent, urgent, and painful urination, as well as pelvic discomfort. The natural bladder lining (epithelium) is protected against toxins in the urine by a layer of enzymes (mucopolysaccharides) known as the GAG (glycoaminoglycan).

In IC, this protective layer is defective, allowing toxins to penetrate into the “interstitial layers” of the bladder wall, depolarize the nerve endings located there, and cause severe irritative voiding symptoms and bladder pain.

Unlike inflammation of the bladder caused by bacterial infection (cystitis), which is associated with urinary tract infections (UTI) and usually treated with antibiotics, no infectious agent has been found in IC. Though not curable, IC is treatable and most patients find relief with treatment and lifestyle changes.

Incidence and Prevalence of Interstitial Cystitis (IC)

According to the National Institutes of Health (NIH), IC affects about 700,000 persons in the United States, with 90% of those affected being women. The typical onset age is 40 years. Although only 25% of occurrences involve persons under the age of 30, the number of youngsters afflicted by IC may be higher than previously thought.

IC is frequently misdiagnosed, and patients may see numerous doctors over the course of years before receiving a diagnosis. Raising awareness of the condition is assisting in the acceleration of diagnosis and treatment. A growing number of men are being diagnosed with IC after being misdiagnosed with chronic prostatitis.

Patient Information about Interstitial Cystitis

Interstitial cystitis (IC) is a chronic, inflammatory bladder condition that causes pain, urinary urgency, and frequent urination. In people who have IC, the lining of the bladder becomes irritated by toxins that are found in urine. Doctors do not know exactly what causes interstitial cystitis; however, researchers have discovered connections between IC and other conditions, such as asthma, endometriosis, and lupus.

There is no cure for IC, but symptoms often can be managed through medication, biophysical techniques, surgery, and changes in diet. Complications of IC include anxiety, depression, and insomnia.

Also Read: 11 Natural Remedies for Interstitial Cystitis

Here are some questions to ask your doctor (e.g., urologist) about interstitial cystitis. Print this page, check off the questions you’d like answered, and take it with you to your next doctor’s appointment. Information about IC can help you work with your doctor to develop an effective treatment plan to manage IC symptoms.

Questions to Ask Your Doctor about Interstitial Cystitis (IC)

  • Why do you suspect that I have interstitial cystitis?
  • Might my IC symptoms be related to another condition, such as overactive bladder, urinary incontinence, bladder infection, bladder stones, kidney disease, or pelvic floor dysfunction?
  • How will these other conditions be ruled out and an IC diagnosis be made?
  • What diagnostic tests do you recommend?
  • What do these tests involve?
  • How should I prepare for these diagnostic tests?
  • Might I need to have cystoscopy with hydrodistention, potassium chloride (KCI) sensitivity test, or bladder biopsy? Can you explain these procedures to me?
  • When can I expect my test and/or biopsy results? Should I call for the results or will someone contact me?

DateTelephone number to call:

  • Who will explain these test results to me?
  • What are Hunner’s ulcers?
  • What is chemical cystitis?
  • What are my treatment options?
  • What type of treatment do you recommend?
  • What are the benefits and disadvantages of this treatment?
  • Do you recommend dietary changes to help alleviate some of my IC symptoms? Why or why not?


  • Might you recommend that I have cystoscopy with hydrodistension from time to time to help reduce my symptoms? Why or why not?
  • Do you recommend local or systemic medication and/or chronic pain medication?
  • How will these medications be administered?
  • What side effects are associated with these IC medications?
  • What should I do if my symptoms worsen or I experience severe side effects?

Telephone number to call:

  • What are your thoughts on biophysical techniques, bladder retraining, and transcutaneous electrical nerve stimulation (TENS) to treat IC?
  • What do these treatments involve?
  • Where can I find a physical therapist that specializes in pelvic floor rehabilitation?
  • Do you recommend that I participate in an IC clinical trial? Why or why not?
  • If so, where can I find a clinical trial that is appropriate for my situation?
  • What is the current status of sacral nerve stimulation as a treatment for IC?
  • Am I a candidate for bladder surgery?
  • Do you recommend naturopathic treatment, such as dietary supplements, herbal medicines, homeopathy, or castor oil packs, for my interstitial cystitis?
  • If so, what do these treatments involve?
  • What is my prognosis? How likely are my symptoms to go into remission?
  • What strategies can I use to plan trips or activities where a restroom may not be readily available?
  • What can I do about some of the complications of interstitial cystitis, such as anxiety, depression, and insomnia?
  • How can I learn more about IC? Can you suggest any books or online resources?
  • Are there support groups for people with IC in my local area?

Interstitial Cystitis (IC) & Bladder Pain

Bladder Pain and IC

Bladder pain is a common symptom of interstitial cystitis (IC), also sometimes called painful bladder syndrome. Bladder pain associated with interstitial cystitis can vary from mild to severe and often comes and goes—flares up and then subsides.

Other IC symptoms include urinary urgency (sensation of having to urinate immediately) and urinary frequency (frequent urination). In women with IC, bladder pain and other symptoms may worsen during sexual intercourse and menstruation.

Other causes for bladder pain and pelvic pain include the following:

  • Bladder cancer
  • Bladder infection (cystitis)
  • Bladder stones
  • Endometriosis (abnormal growth of uterine lining cells outside of the uterus; may affect the bladder and other pelvic organs)
  • Kidney stones
  • Prostate conditions (in men; e.g., prostatitis)

When the cause for bladder pain cannot be determined, a diagnosis of interstitial cystitis/painful bladder syndrome (IC/PBS) may be made. Reducing bladder pain caused by IC/PBS often involves a combination of treatments, including diet modifications, medications, and other therapies (e.g., physical therapy, bladder retraining, biofeedback).

Interstitial Cystitis (IC) Causes & Risk Factors

Causes and Risk Factors for IC

IC is an illness that is poorly understood and has unknown causes. Although no germs or viruses (pathogens) have been discovered in the urine of IC patients, an unknown infectious agent might be the reason. Others feel that IC is caused by ischemia (tissue death) or a lack of GAG in the epithelium due to an unknown reason, while hereditary predispositions have been reported in certain cases.

It might be an autoimmune illness in which the immune system targets healthy cells, possibly as a result of a bladder infection. Pelvic floor muscular spasms may potentially contribute to IC symptoms. The disorder is most likely caused by a combination of events.

Other conditions connected with IC include as follows:

  • Asthma
  • Endometriosis
  • Food allergies
  • Hay fever (pollen allergy)
  • Incontinence
  • Irritable bowel syndrome
  • Lupus
  • Migraine
  • Rheumatoid arthritis
  • Sinusitis
  • Vulvadynia and vulvar vestibulitis

The connection between IC and these conditions is not well understood.

Following gynaecological surgery, IC might arise. Some data shows that Jews are more likely to get IC, and studies of mothers, daughters, and twins who have it imply a familial risk factor.

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