Fact: More than 12 million people in the US have IC
What is Interstitial Cystitis?
Interstitial cystitis (in-tur-STISH-ul sis-TIE-tis) — also called painful bladder syndrome or hypersensitive bladder syndrome — is a chronic condition causing bladder pressure, bladder pain and sometimes pelvic pain. The pain ranges from mild discomfort to severe.
If you’re confused about the name of this condition, don’t be. Collectively, we call it Interstitial Cystitis/Bladder Pain Syndrome (IC/BPS). In Europe, only patients with Hunner’s lesions are diagnosed with IC. Patients without lesions are diagnosed with BPS. In Japan, they use the name Hypersensitive Bladder Syndrome (HBS).
Your bladder is a hollow, muscular organ that stores urine. The bladder expands until it's full and then signals your brain that it's time to urinate, communicating through the pelvic nerves. This creates the urge to urinate for most people.
With interstitial cystitis, these signals get mixed up — you feel the need to urinate more often and with smaller volumes of urine than most people.
Interstitial cystitis most often affects women and can have a long-lasting impact on quality of life. Although there's no cure, medications and other therapies may offer relief.
Five Proposed Subtypes of IC
The system proposed by Dr. Christopher Payne in 2015 shows the great diversity we now see in the IC patient population.(2) No wonder older research and treatment studies were so ineffective. They were putting many different types of patients into the same study.
Subtype 1 – Hunner’s Lesions – The most severe form of IC occurs in the 5 to 10% of patients who have Hunner’s lesions. These are wounds on the bladder that, when biopsied, show severe inflammation. Hunner’s lesions can be very painful, require a strict diet and specific treatments. Hunner’s lesions may be the only true bladder “disease” in the IC community and, in 2015, were linked to a rare viral infection.
Subtype 2 – Bladder Wall Injury – These patients symptoms start after a UTI, chemotherapy, bad diet, chemical exposure. Because the bladder wall has been injured, urine penetrates deeply into the tissues where it causes severe irritation.
Subtype 3 – Pelvic Floor Injury – Having a baby, repetitive pelvic trauma (bicycling, falling), car accident or fall may cause the pelvic floor muscles to tighten around the bladder, nerves and blood vessels where it can cause bladder symptoms and pelvic pain. Pelvic floor physical therapy is now considered one of the best therapies for IC/BPS and research studies have found it to be more effective than oral medications and/or bladder treatments for many patients.
Subtype 4 – Pudendal Neuralgia – These patients often have muscles so tight that they are squeezing or pressing on nerves. Known as bike riders syndrome, sitting can become quite painful. A painful arousal sensation can also occur.
Subtype 5 – Multiple Pain Disorders/Functional Somatic Syndrome – These patients struggle with more than just IC. They often irritable bowel, vulvodynia, prostatodynia, fibromyalgia, neurosensitivity and more. Odds are that this group of patients may have had symptoms from a young age and/or could have other relatives who struggle with bladder and other pain syndromes. If you’ve always wondered why you have struggled with multiple conditions, this explains why. It’s all about having nerves that have become very sensitive. In some cases, it’s genetic and in other cases, it can be result of injury or trauma.
The signs and symptoms of interstitial cystitis vary from person to person. 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:
- Pain in your pelvis or between the vagina and anus in women
- Pain between the scrotum and anus in men (perineum)
- Chronic pelvic pain
- A persistent, urgent need to urinate
- Frequent urination, often of small amounts, throughout the day and night (up to 60 times a day)
- Pain or discomfort while the bladder fills and relief after urinating.
- Pain during sexual intercourse.
Symptom severity is different for everyone, and some people may experience symptom-free periods.
Although signs and symptoms of interstitial cystitis may resemble those of a chronic urinary tract infection, there's usually no infection. However, symptoms may worsen if a person with interstitial cystitis gets a urinary tract infection.
What Causes IC?
Experts do not know exactly what causes IC, but there are many theories, such as:
- A defect in the bladder tissue, which may allow irritating substances in the urine to penetrate the bladder.
- A specific type of inflammatory cell, called a mast cell. This cell releases histamine and other chemicals that lead to IC symptoms.
- Something in the urine that damages the bladder.
- Changes in the nerves that carry bladder sensations so pain is caused by events that are not normally painful (such as bladder filling).
- The body's immune system attacks the bladder. This is similar to other autoimmune conditions..
No specific behaviors (such as smoking) are known to increase your risk of IC. Having a family member with IC may increase your risk of getting IC. Patients with IC may have a substance in the urine that inhibits the growth of cells in the bladder tissue. So, some people may be more likely to get IC after an injury to the bladder, such as an infection.
These factors are associated with a higher risk of interstitial cystitis:
- Your sex. Women are diagnosed with interstitial cystitis more often than men. Symptoms in men may mimic interstitial cystitis, but they're more often associated with an inflammation of the prostate gland (prostatitis).
- Your skin and hair color. Having fair skin and red hair has been associated with a greater risk of interstitial cystitis.
- Your age. Most people with interstitial cystitis are diagnosed during their 30s or older.
- Having a chronic pain disorder. Interstitial cystitis may be associated with other chronic pain disorder, such as irritable bowel syndrome or fibromyalgia
The following may be helpful in diagnosing interstitial cystitis:
- Medical history and bladder diary. Your doctor will ask you to describe your symptoms and may ask you to keep a bladder diary, recording the volume of fluids you drink and the volume of urine you pass.
- Pelvic exam. During a pelvic exam, your doctor examines your external genitals, vagina and cervix and feels your abdomen to assess your internal pelvic organs. Your doctor may also examine your anus and rectum.
- Urine test. A sample of your urine is analyzed for signs of a urinary tract infection.
- Cystoscopy. Your doctor inserts a thin tube with a tiny camera (cystoscope) through the urethra, showing the lining of your bladder. Your doctor may also inject liquid into your bladder to measure your bladder capacity. Your doctor may perform this procedure, known as hydrodistention, after you've been numbed with an anesthetic medication to make you more comfortable.
- Biopsy. During cystoscopy under anesthesia, your doctor may remove a sample of tissue (biopsy) from the bladder and the urethra for examination under a microscope. This is to check for bladder cancer and other rare causes of bladder pain.
- Urine cytology. Your doctor collects a urine sample and examines the cells to help rule out cancer.
- Potassium sensitivity test. Your doctor places (instills) two solutions — water and potassium chloride — into your bladder, one at a time. You're asked to rate on a scale of 0 to 5 the pain and urgency you feel after each solution is instilled. If you feel noticeably more pain or urgency with the potassium solution than with the water, your doctor may diagnose interstitial cystitis. People with normal bladders can't tell the difference between the two solutions.
What is the Treatment for IC?
No single treatment works for all people with IC. Treatment must be chosen for each patient based on symptoms.
Patients usually try different treatments (or combinations of treatments) until good symptom relief occurs. It is important to know that none of these IC treatments works right away. It usually takes weeks to months before symptoms improve. Even with successful treatment, the condition may not be cured. It is simply in remission. But, most patients can get significant relief of their symptoms and lead a normal life with treatment.
Most treatments are aimed at symptom control. IC treatment is often done in phases with constant monitoring of your pain and quality of life. It is important to talk to your health care provider about how your treatments are working so that together you can find the best treatment option for you.
The following are the different phases of IC/BPS treatment:
- First Phase: Lifestyle Changes
- Second Phase: Prescription Drugs
- Third Phase: Neuromodulation Therapy, Ulcer Cauterization & Injections
- Fourth Phase: Cyclosporine
- Fifth Phase: Surgery
Want to learn more?
The following are organizations and/or websites dedicated to providing information and education surrounding Interstitial Cystitis. These organizations are dedicated to research, education, awareness, and/or support. They are listed in Alphabetical order without any preference or prejudice. Listing these organizations is not a recommendation or referral in any regard for seeking treatment or consultation or support for treatment.
Interstitial Cystitis Association
Urology Care Foundation