Interstitial Cystitis

1 What is Interstitial Cystitis?

Interstitial cystitis (in-tur-STISH-ul sis-TIE-tis) is also called painful bladder syndrome — is a clinical condition characterized by bladder pressure, chronic bladder pain, both daytime and nighttime urinary frequency, urgency, and pain in the pelvic region that may range from mild discomfort to severe pain. Your bladder is a hollow, muscular organ that stores urine until you go to the restroom. The bladder can expand until it becomes full, after which, it sends signals to your brain that it is time to urinate, through the pelvic nerves. This results in an urge to urinate in most normal people.

In people with interstitial cystitis, the bladder wall may become irritated, scarred, and stiff. Thier bladder is unable to hold much urine, because of which, they need to urinate more often. Sometimes, in severe cases of interstitial cystitis, a person may pass urine as often as 60 times including nighttime urination (nocturia). The symptoms differ from one person to another, and even in the same individual. This syndrome is more common in women, and their symptoms worsen during menstrual periods.

Medications and other therapies may provide some relief, but there is no treatment that can completely eliminate interstitial cystitis. 

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2 Symptoms

The signs and symptoms of interstitial cystitis differ from one person to another. If you have interstitial cystitis, your symptoms may also vary over time, periodically flaring in response to common triggers, such as menstruation, sitting for a long time, stress, exercise and sexual activity. Interstitial cystitis signs and symptoms include: 

  • Intense pain in your pelvis or between the vagina and anus in women or between the scrotum and anus in men (perineum).
  • A strong, persistent, urgent need to urinate.
  • Need to urinate more frequently, but only small amounts, throughout the day and night. People with severe interstitial cystitis may need to urinate as often as 60 times a day. 
  • Pain or discomfort becomes worse when the bladder is full and gets temporary relieved once you urinate.
  • Pain aggravates during sexual intercourse, menstrual periods or after the intake of certain foods and beverages. 
  • Glomerulations, pinpoint bleeding appears on the bladder wall
  • Hunner’s ulcers—patches of broken skin on the bladder wall

The symptoms of interstitial cystitis often vary in their severity, and some people may experience episodes lasting for few days, weeks or even months during which the symptoms disappear, followed by periods of worsening symptoms. Although, the signs and symptoms of interstitial cystitis are similar those of a chronic urinary tract infection, urine cultures are typically devoid of bacterial growth. However, symptoms may become more worse if a person with interstitial cystitis develops a urinary tract infection. 

When to see a doctor 

 Contact your doctor as soon as possible if you are experiencing chronic bladder pain, urinary urgency and frequency.

3 Causes

The exact cause of interstitial cystitis remains obscure, but it is likely that several factors play a role. For instance, people with interstitial cystitis may also have a defect such as an ulcer, a scar in the protective lining (epithelium) of the bladder. Although there may not be any signs of infection in the bladder. A breach in the epithelium may allow toxic substances in the urine to irritate your bladder wall and surrounding muscles and nerves. Other proposed but unproven factors that may contribute to interstitial cystitis include:

  • Your immune system erroneously attacks your bladder – an autoimmune reaction.
  • Pelvic floor muscle dysfunction or dysfunctional voiding.
  • Pathogenic action of mast cells in the mucosal layers of the bladder.
  • A toxic substance produced in the urine.
  • Infection with a slow-growing virus or extremely fastidious bacterium.
  • Heredity
  • An allergic reaction

4 Making a Diagnosis

Making a diagnosis of interstitial cystitis is done by performing several tests.

If you have symptoms of interstitial cystitis, you primary care doctor will ask you to maintain a voiding diary for a few days to record information, such as how often you urinate and the quantity and types of fluid you consume. For further evaluation of your condition, you may be referred to a specialist in urinary disorders (urologist) or urinary disorders in women (urogynecologist). 

What you can do?

  Prepare yourself before going to the appointment. Make a list of the following information:

  • The symptoms you are experiencing. Include the symptoms, even if you think they are unrelated to the reason of the appointment. 
  • Regular medications, vitamins or other supplements that you take. Include their dosages, and how often you take the medication or supplements. 

Ask a family member or a close friend to accompany you. You may be given lots of information by your doctor during your visit, and it may be hard to remember everything. Take a notepad or an electronic device along to note important information given during your visit.

Prepare a list of questions to ask your doctor.

For interstitial cystitis, some basic questions to ask your doctor include:

  • Will my symptoms go away with time?
  • What tests will I need?
  • Will dietary modifications improve my symptoms? 
  • Can the medicines I take aggravate my condition?
  • Do any medications ease my symptoms?
  • Will I need surgery? 

What to expect from your doctor?

    Be prepared to answer questions your doctor might ask. Potential questions include: 

  • How often do you feel the sudden urge to urinate with little or no warning? 
  • Do you feel the urge to urinate soon after urinating? 
  • Do you have to urinate before two hours of your last visit to the toilet? 
  • Do you wake up from sleep at night to urinate? 
  • Do you have pain or burning sensation in your bladder? 
  • Do you have pain in your abdomen or pelvic region?
  • Are you currently sexually active? 
  • How severe are your symptoms?

The following test may be recommended in the diagnosis of interstitial cystitis: 

  • Medical history and bladder diary: Your doctor will ask you to describe your symptoms and may also advise you to maintain a bladder diary, which records the volume of fluids you drink and the amount of urine you pass. 
  • Pelvic examination: During a pelvic examination, your doctor will examine your external genitalia and cervix, and your abdominal area is palpated to assess your internal pelvic organs. Your doctor may also examine your anus and rectum.
  • Urine test: A sample of your urine will be examined for any evidence of a urinary tract infection
  • Potassium sensitivity test: In this test, your doctor will place two solutions, for instance, water and potassium chloride, one at a time into your bladder. Then, you will be asked to give a rating for your pain and feeling of urge to urinate, on a scale of 0 to 5. If you have noticeable pain or urgency with the potassium solution than with the water, your doctor may diagnose interstitial cystitis. People with normal bladders can feel no difference between the two solutions. 
  • Cystoscopy: During cystoscopy, your doctor inserts a thin tube attached with a tiny camera at its end (cystoscope), through the urethra. This allows your doctor to visualize the lining of your bladder. Along with cystoscopy, your doctor may inject a liquid into your bladder to measure your bladder capacity. Your doctor may perform this procedure, known as hydrodistention, after giving you anesthetic medication to keep you comfortable. 
  • Biopsy: While performing cystoscopy under anesthesia, your doctor can remove a tissue sample (biopsy) from the bladder and the urethra, which is sent to a laboratory for examination under a microscope. This is done to check for bladder cancer and other rare causes of bladder pain.

5 Treatment

As the causes of interstitial cystitis are unknown, the treatment is focused on relieving the symptoms. No simple treatment exists to eliminate the signs and symptoms of interstitial cystitis, and no single treatment is effective in everyone. You may need to try various treatments or combinations of treatments before you find an approach that relieves your symptoms.

  • Physical therapy: A physical therapist can teach you certain gentle stretching exercises that may help in relieving pelvic pain associated with muscle tenderness, restrictive connective tissue or muscle abnormalities in your pelvic floor. In addition, there are certain types of physical therapy, which when administered by an experienced physical therapist, improve the symptoms of interstitial cystitis.
  • Oral medications: Oral medications that may improve the signs and symptoms of interstitial cystitis include: 
  1. Nonsteroidal anti-inflammatory drugs, such as ibuprofen (Advil, Motrin IB, others) or naproxen (Aleve) can relieve pain. 
  2. Tricyclic antidepressants, such as amitriptyline (Elavil) or imipramine (Tofranil) may reduce pain, help relax your bladder and increase bladder capacity and thereby decrease urinary frequency.
  3. Narcotic analgesics, such as acetaminophen (Tylenol) with codeine or longer-acting narcotics may be prescribed in severe pain.
  4. Antihistamines, such as loratadine (Claritin, others) may reduce urinary urgency, frequency, and other symptoms. 
  5. Pentosan polysulfate sodium (Elmiron), which is approved by the Food and Drug Administration specifically for treating interstitial cystitis. Doctors are not sure how exactly this drug works, but one of the theory states that it may repair and restore the defects that have developed on the inner surface of the bladder. This will protect the bladder wall from irritating substances found in the urine. This medication should be taken for a long-term as it may take two to four months before you begin to feel pain relief, and up to six months to experience a decrease in urinary frequency. 
  • Nerve stimulation: Nerve stimulation techniques include:
  1. Transcutaneous electrical nerve stimulation (TENS): The technique of delivering electrical impulses through the skin is called transcutaneous electrical nerve stimulation (TENS). With TENS, mild electrical pulses are delivered into the body for minutes to hours, two or more times in a day either through the wires placed on the lower back or just above the pubic area or through special devices placed into the vagina in women or into the rectum in men. These mild electrical pulses help relieve pelvic pain and, in some cases, decrease urinary frequency. TENS may relieve pelvic pain by increasing blood flow to the bladder, strengthening the pelvic muscles that control the bladder or triggering the release of substances that block pain. 
  2. Sacral nerve stimulation: Your sacral nerves act as a primary link between the spinal cord and nerves in your bladder. Stimulation of these nerves may relieve urinary urgency associated with interstitial cystitis. During the process of sacral nerve stimulation, a thin wire placed near the sacral nerves delivers electrical impulses to your bladder, in a manner similar to what a pacemaker does for your heart. If this procedure produces a favorable response, a permanent device may be implanted surgically.
  • Bladder distention: Most people with interstitial cystitis have noticed an improvement in their symptoms after undergoing cystoscopy with bladder distention. This procedure is done both as a diagnostic test and initial therapy. Bladder distention involves stretching of the bladder with water or gas. It may help in increasing the capacity of your bladder and also interferes with the pain signals transmitted by nerves in the bladder. Symptoms may become worse temporarily for about 4-48 hours after distention, but it may return to normal or may improve within 2-4 weeks. This procedure may be done repeatedly as a treatment if there is a long lasting response.
  • Bladder instillation: In bladder instillation, also called a bladder wash or bath, your doctor fills a measured amount of the prescription medication, dimethyl sulfoxide (Rimso-50) into your bladder through a narrow, flexible tube (catheter) inserted through the urethra. This solution may sometimes be mixed with other medications, such as a local anesthetic, and retained in your bladder for about 15 minutes, before you urinate to expel the solution. You might receive dimethyl sulfoxide — also called DMSO — treatment weekly for six to eight weeks, and then have repeated maintenance treatments as needed — such as once in every two weeks, for up to a year. A newer approach to bladder instillation uses a solution containing the medications lidocaine, sodium bicarbonate, and either pentosan or heparin. Patients who are highly motivated and think that they are able to catheterize themselves may do so, after consulting a doctor. DMSO treatment can be taken at home, and moreover, self-administration is less expensive and more convenient rather than going to the doctor’s office.
  • Surgery: Doctors consider surgery as treatment of interstitial cystitis only when all other treatments have failed and the pain is debilitating. Removing part or all of the bladder doesn't relieve pain and may further lead to other complications. Several approaches and techniques are used, which include: 
  • Fulguration: This minimally invasive method involves insertion of instruments through the urethra to burn off Hunner's ulcers using electricity or a laser beam. When it heals, the dead tissue along with the ulcer falls leaving behind a healthy tissue.
  • Resection: This is another minimally invasive method that involves insertion of special instruments into the bladder through a cystoscope to cut and remove the ulcers. 
  • Bladder augmentation: In this surgical procedure, which makes the bladder larger, the surgeon removes the scarred, inflamed, and ulcerated portions of the bladder, and replaces it with a piece of the patient's colon. Pain still remains the same, and some people may even need to empty their bladders through a catheter many times a day.

6 Alternative And Homeopathic Remedies

There are two kinds of complementary and alternative remedies that have shown to be helpful in treating interstitial cystitis: 

  • Guided imagery: This therapy involves visualization and direct suggestions using imagery to help you imagine healing. It believes that the body will follow the mind's suggestions. 
  • Acupuncture: During an acupuncture session, a practitioner inserts numerous fine needles into your skin at specific points in your body. According to traditional Chinese medicine, precisely pricked acupuncture needles can ease your pain and other symptoms by rebalancing the flow of life energy. Western medical practitioners tend to explain that acupuncture can boost the activity of your body's natural painkillers. However, these therapies have not been well-studied for interstitial cystitis, therefore, discuss the use of these treatments with your doctor.

7 Lifestyle and Coping

The emotional support derived from your family, friends, and other people with interstitial cystitis can help you cope well with your problem. Studies have established that people who have knowledge about their disorder and those who participate actively in their own care do far better than people who do not.

Here are some self-care strategies you can follow to find some relief from your symptoms of interstitial cystitis:

  • Dietary modifications: Avoiding or limiting the intake of certain foods that are known to be potential bladder irritants may help relieve some discomfort of interstitial cystitis. Common bladder irritants — known as the "four Cs" — include: 
  1. Carbonated beverages
  2. Caffeine in all forms (including chocolate) 
  3. Citrus products and food containing high concentrations of vitamin C. 

Also, avoid foods such as tomatoes, spicy pickled foods, and artificial sweeteners, which may aggravate symptoms in some people. If you think certain foods may irritate your bladder, try eliminating them from your diet. Reintroduce these one at a time and check whether they worsen your signs and symptoms. 

  • Bladder training: Bladder training involves following a routine for urination — going to the toilet according to the time rather than waiting for the urge to come. You can start by going to the toilet at regular set intervals, for example, for every half-an-hour — whether you feel the urge to urinate or not. Then, you may slowly wait for longer time between bathroom visits. During bladder training, you may control your urge to urinate by using relaxation techniques, such as breathing slowly and deeply or getting engaged with another interesting activity. 
  • Wear loose fitting clothes: Avoid wearing belt or dresses that exert pressure on your abdomen. 
  • Manage your stress: Try relaxation methods such as visualization and biofeedback
  • Stop smoking: Smoking can make any painful condition worse, and it can also contribute to bladder cancer.
  • Regular exercises: Performing gentle stretching exercises may help you reduce symptoms of interstitial cystitis. 

Interstitial cystitis significantly affects your quality of life. Support from your family and friends plays an important role, but as this is a urinary problem, you may find it difficult to discuss your concern with others. Consult a supportive doctor who is concerned about your quality of life and your condition. Seek some help from a doctor who can work with you to reduce your urinary frequency, urge, and bladder pain. 

You might also consider joining a support group. A support group can provide you some useful information and sympathetic listening. Ask your doctor for information on support groups or visit the Interstitial Cystitis Association on the Web.

8 Risks and Complications

The factors associated with a greater risk of developing interstitial cystitis include : 

  • Gender: Interstitial cystitis is more commonly diagnosed in women than men. There can be nearly identical symptoms to those of interstitial cystitis in men, but are more often associated with an inflammation of the prostate gland (prostatitis). 
  • Age: Most often, interstitial cystitis is diagnosed at the age of 30 or more. 
  • Having a chronic pain disorder: Interstitial cystitis may be associated with chronic pain disorders, such as irritable bowel syndrome or fibromyalgia.

 Interstitial cystitis can lead to several complications, including: 

  •     Decreased bladder capacity: Interstitial cystitis may make your bladder wall stiff, thereby, reducing your bladder capacity, which mean your bladder can hold lesser amount of urine. 
  •     Lower quality of life: Frequent urge to urinate and pain may intervene with your work, social activities, and other routine activities. 
  •     Sexual intimacy problems: Frequent urination and pain may meddle with your personal relationships, and cause problems related to sexual intimacy. 
  •     Emotional troubles: The persistent pain and sleep disturbances associated with interstitial cystitis may cause emotional stress that eventually leads to depression.

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