Interstitial Cystitis
What is it?
Interstitial cystitis (IC) is caused by a recurring inflamed or irritated lining of the bladder. It is also known as Painful Bladder Syndrome, Chronic Pelvic Pain Syndrome and Frequency-Urgency-Dysuria syndrome. In people without IC, the bladder wall has a lining that protects it from toxins in the urine. In people with IC, this protective layer has broken down, allowing toxins to irritate the bladder wall. The bladder then becomes inflamed and tender and does not store urine properly.
IC is different from common cystitis. Common cystitis is inflammation of the bladder caused by bacterial infection and is usually easily treated with antibiotics. No-one really knows what causes IC, and it does not respond to antibiotics. Although there is no cure for IC, most patients find some relief with treatment and lifestyle changes.
Although IC can affect both men and women, 90% of IC cases are women. The average age of onset is 40 years. Although only 25% of cases involve people under age 30, the number of children affected by IC may be greater than commonly believed. IC is difficult to diagnose and is often overlooked. It is not unusual for sufferers to see several doctors over the course of a few years before a diagnosis is made. Increasing awareness of the disease is helping to make diagnosis and treatment quicker.
What are the symptoms?
The symptoms of IC vary from those of common cystitis. In common cystitis, symptoms are only present during an ‘attack'. In cases of IC, symptoms are present all the time. Symptoms of IC can include any of the following:
Symptoms usually worsen within the first 5 years and then level off. Following this, people with IC usually have good times, when symptoms lessen, followed by bad times, where the symptoms flare up and get worse.
How is it diagnosed?
The symptoms of IC are similar to many other conditions, so a number of tests must be performed to rule these out.
The doctor will first examine your urine for bacteria and signs of infection. In men, fluid from the prostate may also be taken for examination. If there are no signs of infection, your GP may refer you to a urologist.
Cystoscopy
The main way of diagnosing IC is by carrying out a cystoscopy under general anaesthetic. The bladder is usually filled with water until it is full. A thin tube with a camera on the end is inserted into your urethra up to your bladder. This allows the doctor to examine the lining of your bladder. Glomerulations (tiny bleeds that are the telltale sign of IC) are only seen while the bladder is full. These bleeds are present in 95% of IC cases.
Less commonly, ulcers and scars are found on the bladder lining. A biopsy, in which a tiny piece of the ulcer is removed and analysed, is carried out to make sure the ulcers are not cancer-related.
Cystoscopy may also show up bladder stones, which can cause symptoms similar to IC.
What is the treatment?
There is no cure for IC so the main aim of treatment is to relieve symptoms. Sometimes a treatment works for a while and then wears off and so a replacement treatment must be found. Most patients who suffer from IC find some relief, usually with a variety of treatments that work together to make symptoms better.
Bladder distension
Some people report that their symptoms are better after a cystoscopy (when the bladder is filled with water). Therefore a cystoscopy may be used as both an investigation and a treatment.
Bladder retraining
Patients with IC feel the need to urinate more frequently because they have pain or urgency as the bladder fills. However, if you urinate too frequently your bladder may gradually become smaller making the problem of frequency worse. Bladder retraining is a self-help process where you learn to control your urge to urinate.
Bladder retraining exercises vary. Generally, you would have a schedule where you only urinate at specific times. Relaxation techniques and distractions can be used to help keep to the schedule. The time between each urination is gradually lengthened. This strengthens the bladder muscle. Bladder retraining may be difficult to perform if the pain is severe.
Transcutaneous electrical nerve stimulation (TENS)
TENS is the application of mild electric pulses to the body through pads placed on the lower back or at the front, above the pubic area. The TENS pads can be worn for any length of time, from a few minutes up to several hours. It is thought that the electric pulses increase blood flow to the bladder, strengthen pelvic muscles, and trigger the release of special hormones that block pain. You may have to use TENS for a couple of months before it begins to work.
Diet
Although there is no scientific evidence linking IC to diet, many people find that getting rid of acidic, spicy, and sugary foods, as well as dairy products and alcohol from their diet helps to control symptoms. Smoking is also linked to worsening of symptoms, and many people find that their symptoms improve once they give up smoking.
Surgery
Surgery is typically performed only when other treatments fail to provide relief. It does not always work and may even make the symptoms worse.
If you have the type of IC where ulcers are present on the lining, these may be removed by laser or through surgery. Both of these operations are performed with a cystoscope inserted through the urethra under general anesthesia.
Bladder removal (cystectomy)
While you are under a general anaesthetic, the doctor can re-route the ureters into a small piece of bowel so that the open end emerges from the skin of your abdomen. The hole on the surface of your abdomen, where the urine will now pass, is called a stoma. Urine will be collected from the stoma in a flat watertight bag, which you will have to empty regularly. Even after the bladder is removed, some people still have symptoms, so this operation should only be carried out after extensive discussions with your doctor.
Further information
Your local GP surgery is the best place for you to find information on interstitial cystitis, especially if you have specific concerns about your symptoms and treatment. Charities related to the bladder can also be useful sources of information and support.
UK Interstitial Cystitis Support Group www.interstitialcystitis.co.uk
