What Is Bladder Pain Syndrome (Interstitial Cystitis)?

What it is and how it is named

The bladder is a muscular organ that stores the urine arriving from the kidneys until it is passed. Bladder pain syndrome describes a picture in which pain, pressure or discomfort felt in the bladder region lasts longer than six weeks and is accompanied by complaints such as urinary frequency and urgency, while investigations show neither an infection nor another disease that would explain it.

The same picture was known for many years as interstitial cystitis. The word "cystitis" means inflammation of the bladder; because no bacterial inflammation is present here, current sources prefer the names bladder pain syndrome or painful bladder syndrome, which put the pain first. The two names are used side by side in most texts and describe the same condition.

It is reported more often in women than in men, yet it can occur in both sexes and across a wide age range. The severity varies greatly from person to person: some have quiet periods lasting months, while others live with a constant discomfort that clearly affects daily life.

Why it develops

No single cause can be shown in bladder pain syndrome. Different mechanisms are thought to come to the fore in different people, and the name is understood to cover a group of conditions with shared complaints rather than one single disease. The headings most often studied are the following:

The protective layer lining the bladder. The inner surface of the bladder is covered by a thin layer of long sugar based molecules. The general name of these molecules is glycosaminoglycan. It has been proposed that when this layer thins or becomes more permeable, substances in the urine may reach the bladder wall and cause irritation. This is one of the hypotheses most often cited in explaining the condition, and research continues.

Sensitisation of nerve endings. In long lasting pain, the sensory nerves in the bladder wall and the pathways they connect to may begin to respond to stimuli at a lower threshold. Filling that would normally cause no discomfort may then be perceived as pain.

A local inflammatory response. An increase in the number of certain immune cells in the bladder wall, and the substances they release, has been described particularly in the smaller group of patients in whom ulcer like changes are seen on the inner surface of the bladder.

Tension of the pelvic floor muscles. The muscles at the base of the pelvis may stay contracted for long periods. This tension is regarded as a factor that sustains the pain and makes emptying more difficult.

Accompanying conditions. Irritable bowel complaints, widespread muscle pain conditions, migraine, anxiety and sleep disturbance often accompany this syndrome. They may not be the cause of the pain, but they influence its severity and the burden it places on daily life.

Symptoms

Three complaints occur together: pain, urinary frequency and urgency.

The most distinctive feature of the pain is its relationship with filling. It increases as the bladder fills and eases for a while after urine is passed. It may be felt in the lower abdomen, in the groin, along the urinary channel, around the vagina in women and between the anus and the testicles in men. People often describe the sensation as pressure, burning or straining from within rather than as pain.

Urinary frequency continues both by day and by night. The volume passed each time is usually small; the person goes to the toilet before the bladder is full, because the aim is to relieve the pain rather than to empty the bladder. In this respect the condition differs from an overactive bladder, where fear of leakage is the leading concern.

Complaints that come and go are typical. Weeks of mild symptoms may be followed by flare ups lasting several days; people link these periods with heavy work, lack of sleep, menstruation or particular foods. Pain during intercourse and increased complaints afterwards are also frequently reported.

At the outset the complaints closely resemble a urinary tract infection. The distinguishing point is that cultures come back clear time after time and the complaints persist despite the treatments given. For the other causes of burning on passing urine you may read our article on dysuria. Bladder pain syndrome is a benign condition; there is no evidence that it turns into bladder cancer.

Assessment and diagnosis

There is no single blood or urine test that demonstrates this condition. The diagnosis is made by excluding the conditions that cause similar complaints. The physician first asks when the complaints began, in which situations they increase, about urinary and bowel habits and about past infections.

The steps commonly used in the assessment are:

• Bladder diary. Over three days the person records fluid intake, the times of each visit to the toilet, the volume passed and the pain score at that moment. It is the tool that contributes most to both diagnosis and follow-up.
• Urinalysis and culture. Required to exclude infection; repeated when necessary.
• Symptom scores. Question lists that score pain and urinary complaints allow the course to be compared from one period to another.
• Physical examination. Includes assessment of the abdomen, the groin and the pelvic floor muscles, looking for tension and tender points.
• Imaging and further investigations. Ultrasound can measure the urine remaining in the bladder after emptying. Where blood is seen or the course is not typical, the physician may ask for the inside of the bladder to be examined with a camera.

Which investigations are needed varies from person to person. Question lists found on the internet may give an idea, but they do not establish a diagnosis.

Daily life and follow-up

Follow-up in bladder pain syndrome runs over a long period and is arranged according to the complaint that troubles the person most. The headings that come up most often in daily life are:

• Recognising personal triggers. Coffee, strong tea, acidic and fizzy drinks, citrus fruit, tomatoes, spicy food and alcohol increase complaints in some people. There is no list of prohibitions that applies to everyone; removing the foods you suspect for a while, adding them back one by one and recording the result in the bladder diary is the way to draw up your own list.
• Fluid intake. Cutting fluids back too far out of fear of pain may concentrate the urine and increase the complaints. It is better to decide the daily amount together with your physician.
• The pelvic floor. The form of exercise for these muscles varies from person to person and is decided by a physician or physiotherapist; wrongly performed contraction exercises may increase the complaints.
• Bowel habits. Avoiding constipation is among the recommendations aimed at reducing strain in the pelvic region.
• Sleep and stress. Sleep routine and management of anxiety are regarded as headings that affect the burden the pain places on daily life.
• Warmth and clothing. Warm applications are reported to be soothing; clothing that presses on the waist and groin increases discomfort in some people.

Flare ups are part of the natural course of this condition and do not mean that it is getting worse. Your physician draws up the follow-up plan; do not stop a treatment your physician has started on your own decision because the complaints have eased.

When to see a doctor

Medical advice should be sought without delay in the following situations:

• Fever, chills and flank pain added to the complaints.
• Visible blood in the urine.
• Being unable to pass urine at all, or a feeling that the bladder cannot be emptied.
• Bladder pain that is new and worsening rapidly.
• Unexplained weight loss or night sweats alongside the complaints.

Beyond these, bladder pain and urinary complaints lasting longer than six weeks should also be assessed. Considering this condition is particularly important in people who are repeatedly told they have cystitis while their cultures remain clear, because it helps avoid unnecessary courses of antibiotics. Complaints lasting a long time do not mean a serious disease, but a medical assessment is needed to distinguish the cause and to establish a follow-up plan.

This page has been prepared for general health information; please consult your physician for diagnosis and treatment and your pharmacist for questions about medicine use.

Frequently asked questions

How is bladder pain syndrome distinguished from a urinary tract infection?

The complaints are very similar. The distinguishing point is the urine culture: in an infection a bacterium is demonstrated, whereas in bladder pain syndrome cultures come back clear time after time and the complaints last for months. Your physician makes this distinction.

Does this condition turn into cancer?

Bladder pain syndrome is a benign condition and there is no evidence that it turns into bladder cancer. Visible blood in the urine, however, is always a finding that must be assessed separately; consult your physician without delay.

Do I have to cut out certain foods?

There is no list of prohibitions that applies to everyone. Coffee, acidic drinks, citrus fruit and spicy food are frequently reported triggers, but this varies from person to person. Removing the foods you suspect for a while, adding them back one by one and recording the result in the bladder diary is the most practical approach.

Will my complaints ease if I drink less?

Cutting fluids back too far may concentrate the urine and increase the complaints. For this reason it is better to decide the daily amount together with your physician rather than reducing it on your own.

My complaints disappear from time to time; is the diagnosis wrong?

No. Good and bad periods following one another is a typical feature of this condition. Recording flare ups and the circumstances that preceded them in the bladder diary guides your physician during follow-up.

Is bladder pain syndrome contagious?

No. It is not a communicable disease and is not sexually transmitted. Your physician may request a urine test to determine whether the complaints are related to an infection.

Aymed İlaç Sanayi manufactures authorised medicinal products in urology and nephrology. This page does not contain diagnostic or treatment advice; it is intended as general health information.