Interstitial cystitis (IC) is a rare, painful and chronic inflammation of the wall of the urinary bladder. In case of interstitial cystitis, the wall of the urinary bladder is irritated, making it stretch less easily and decrease the capacity of the bladder. As a result, a person sooner feels that the bladder is full and thus has urge.
Interstitial cystitis often occurs spontaneously. Sometimes, the disease is the result of a severe bladder infection or surgery, for example to the uterus or prostate. The cause of the disease is still unclear. Bacteria don’t play a role. The inflammation possibly occurs because the immune system produces antibodies against its own urine (autoimmune response).
Initially, the symptoms are the same as for an ordinary bladder infection. They can gradually get worse. The signs and symptoms of interstitial cystitis are:
- Peeing often.
- Constantly feeling urge.
- Abdominal pain, radiating to the back, groin or legs.
- Bladder pain, especially when the bladder is fuller. Peeing reduces this pain.
- Pain when holding one’s water.
- Painful urethra.
- Stabbing pain in the vagina (in women).
- Burning sensation in the area around the genitals.
Hormonal changes in women can increase the symptoms. Those changes occur, for example, by taking the pill, menopause or menstruation.
Interstitial cystitis can be very troublesome in daily life. Because the symptoms also occur overnight, the condition can lead to sleep deprivation and exhaustion. Outdoor activities are becoming increasingly difficult, because a person with interstitial cystitis often needs to go to the toilet.
The diagnosis of interstitial cystitis is difficult to determine and can only be made when other causes, such as an ordinary bacterial bladder infection, don’t play a role. Sometimes, the urologist decides to look inside the bladder with an endoscope (cystoscopy). In case of an interstitial cystitis, the doctor can usually see some small bleedings in the bladder wall. Via this endoscope, a small piece of tissue (biopsy) can be taken from the bladder wall. Then so-called ‘mast cells’ can be seen. These are cells that are loaded with dirty molecules, which are secreted by these cells into the bladder wall.
Interstitial cystitis cannot be cured, but there are treatments to reduce the symptoms:
- Pain medication and anti-inflammatories. Medication will relax the bladder and reduce the urge.
- Neurostimulation (PTNS). With PTNS, the nerves that run to the bladder are stimulated by electrical impulses, often causing the urge to be reduced.
- Bladder rinsings inhibit the inflammations and restore the sugar layer.
- The pain sites and ulcers in the bladder can be treated with laser.
- Botox injections in the bladder mucosa. This is done in the operating room.
- In some cases, when the bladder is seriously damaged, the bladder capacity is greatly reduced and there’s a lot of pain, surgery may be needed. The bladder is removed then. The urologist constructs a urostoma or a new bladder may be made from a part of the intestine.
Interstitial cystitis is a chronic condition that won’t pass without treatment. But even with treatment there is usually no cure. Quality of life can be increased by the treatment, but treatment is not without side effects. When doing nothing, there’s chronic pain. When opting for treatment, one may have less or even no pain, but has to deal with other inconveniences. In the largest group of patients, one of the previously mentioned treatments is sufficient in order to achieve an acceptable level of pain.
- Many patients with interstitial cystitis are helped with a diet, which is low in alcohol, caffeine, chocolate, spices and citrus fruits.
- For patients with interstitial cystitis, there's no reason to drink extra fluid.
- Experience shows that cold has a bad effect on the symptoms and heat a good. Therefore, wear warm (under)clothing, make a hot-water bottle or use an electric blanket in order to relieve the symptoms. A warm hipbath for twenty to thirty minutes can also relieve the pain.
- When there’s pain during intercourse, a long hipbath before having sex may also help, possibly combined with a painkiller or suppository.
- The term ‘interstitial cystitis’ is derived from the Latin words interstitium (interruption, between the structures) and cyste (fluid-filled vesicle). The suffix -itis indicates that it is an inflammation.
- The prevalence of interstitial cystitis is 5% and increases with age.
- Interstitial cystitis usually occurs in people aged 20 to 65 years.
- The condition is mainly a problem in women.