Interstitial cystitis – symptoms, diagnosis and treatment

Interstitial cystitis is a chronic disease that significantly reduces the patient’s quality of life. Symptoms related to the bladder – such as pain, discomfort, pressure or pollakiuria – impede normal functioning, even excluding you from everyday activities. The diagnosis of interstitial cystitis is difficult and can take up to several years, while the treatment depends practically solely on the financial capacity of the patient. Find out more about interstitial cystitis.

IC help Poland association phone: 508 570 076

Email: [email protected]

Interstitial cystitis – what is this disease?

Interstitial cystitis (ang. Interstitial Cystitis, IC) otherwise painful bladder syndrome (The. Bladder Pain Syndrome, BPS) is a chronic inflammatory disease of the lower urinary tract, the development mechanism of which has not yet been elucidated. It is characterized by persistent or recurring bladder complaints for at least 6 months.

IC affects mainly women between 30 and 50 years of age, the disease less frequently affects men. Sometimes it is diagnosed in infants and children. The occurrence of the disease does not pose a threat to the patient’s life, although it significantly reduces its quality.

IC help Poland Association tel: 508 570 076, email: [email protected]

Interstitial cystitis – classification

Interstitial cystitis comes in two main forms, as:

1. classic form – characteristic of it is the so-called Hunner’s lesion, visible as an area of ​​redness or ulceration on the bladder wall;
2. non-classical form – Hunner change does not occur.

Appropriate classification is important as it determines the choice of form of treatment.

The causes of interstitial cystitis

The factors responsible for the occurrence of painful bladder syndrome, as well as the mechanism of the disease development, are not fully understood. However, the conducted observations allow us to suspect that there are a number of disorders contributing to the occurrence of pathological reactions that mutually drive each other, creating the so-called vicious circle.

The disruption of the glycosaminoglycan coating on the inside of the bladder mucosa, through which the permeability of the bladder wall increases and the penetration of irritating substances into it, as well as the sensory innervation of the bladder, is of significant importance in the development of IC. This results in a further development of inflammation. It is difficult to pinpoint the cause of the cascade of events. It is known, however, that breaking the vicious circle should reduce your symptoms.

Interstitial cystitis – symptoms

The main symptom of interstitial cystitis is disturbances in urge to urinate, consisting in increased sensitivity to sensory stimuli and intense perception of events occurring within the bladder, urethra and pelvis. Although the most common form of sensory disturbance is pain, there are also a number of other unpleasant ailments.

Patients suffering from painful bladder syndrome report symptoms such as:

1. pain in the lower abdomen, which increases with filling the bladder and decreases with urination,
2. discomfort in the perineum,
3. urgency pollakiuria,
4. urinating at night
5. discomfort associated with sexual intercourse.

In women, pain is felt in the perineum, urethra, anus, and also in the labia, while in men, pain is also felt in the penis, scrotum and testes.

The symptoms associated with interstitial cystitis are progressive. At the beginning of the disease, the symptoms are mild and there are often periods of remission, with time their intensity increases and they are annoying all the time.

Diagnostics of the interstitial cystitis

The diagnosis of interstitial cystitis is difficult due to non-specific symptoms. The observations show that the average time from the appearance of the first symptoms to the correct diagnosis is from 3 to even 10 years.

The diagnosis of painful bladder syndrome is divided into several stages:

First step

People who have chronic pain, discomfort or pressure in the pelvis and feel related to the bladder are referred for testing. Until recently, it was believed that diagnostics should be performed only when these symptoms persist for at least 6 months. Currently, it is recommended to start active diagnostics earlier, provided that the pain is not associated with another disease of the genitourinary system, and the patient complains of pollakiuria or urgency.

Step two

It comes down to excluding other possible causes of the ailment. For this purpose, tests such as urinalysis, urine culture, imaging tests, and sometimes tests for specific disorders that may show similar symptoms are performed. At the same time, it is worth emphasizing that the detection of another disease does not exclude the possibility of interstitial cystitis.

Step three

The disease is classified on the basis of cystoscopy with hydrodistension (stretching of the bladder) and selective sampling of bladder specimens. Urodynamic testing is not normally performed to diagnose interstitial cystitis, but may be ordered to rule out other urinary problems.

Interstitial cystitis – treatment

Treatment of painful bladder syndrome is very difficult and, unfortunately, in many cases it does not bring the expected results. It requires an individual approach and adjustment of treatment procedures to the patient’s health condition.

Given the progressive nature of the disease, time is of the essence. Treatment should be initiated as early as possible to avoid serious consequences.

Management of interstitial cystitis

Treatment in the course of painful bladder syndrome is graded on a 4-level scale, where:

1. First-line treatment – includes behavioral therapy, nutritional modification, bladder training, and self-help techniques;
2. Second-choice procedure – oral pharmacotherapy is used: PPS (sodium pentosan polysulfate) and implements analgesic and adjuvant treatment;
3. The third-choice procedure – intravesical treatment (infusions, botulinum toxin) and neuromodulation are used;
4. Fourth-choice procedure – various types of procedures are performed, including cystectomy or ileocystoplasty.

Non-surgical treatment of interstitial cystitis

The symptom that most bothers people struggling with interstitial cystitis is the pain that prevents the normal functioning of the pain, which is why they most care about relieving it. Therefore, if there is a suspicion of the presence of this ailment, analgesic treatment should be initiated.

Parallel to the treatment of pain, causal treatment should be carried out, primarily aimed at reducing inflammation and restoring the barrier functions of the epithelium lining the urinary tract. As the exact etiological factor behind painful bladder syndrome is unknown, various treatments are available.

Getting the right drugs to support treatment is difficult because they are not reimbursed and they are relatively expensive. Many patients, due to severe ailments, are unable to work professionally, and therefore have limited financial possibilities, so they simply cannot afford to cover the costs of such treatment.

Surgical treatment of interstitial cystitis

In the advanced stages of the disease, surgical treatment may be necessary. The following treatment procedures are used:

1. cystoscopy with low-pressure bladder hydrodistension – is a diagnostic and therapeutic procedure that allows to distinguish the classic form from the non-classical one;
2. resection / fulguration of Hunner lesions – enables destruction of Hunner lesions by resection or coagulation with electric current or laser;
3. injection of the bladder with botulinum toxin – is used in the treatment of the non-classical form, inhibits the key impulse, and also blocks the back secretion of pro-inflammatory substances;
4. cross neuromodulation (SNM) – involves implanting electrodes with the help of which low-voltage electrical stimulation is carried out, which inhibits the transmission of pain information and the feeling of pressure;
5. surgical treatment – includes procedures such as supravesical urine drainage, removal of the bladder leaving the bladder triangle and ileocystoplasty, or complete removal of the bladder with retention or removal of the urethra.

Living with interstitial cystitis

Interstitial cystitis is an incurable disease that does not pose a direct threat to life. With the selection of the appropriate therapy, there is a chance to reduce symptoms and stabilize health, but each case is different and it all depends on individual circumstances.

The disease has a significant impact on virtually every aspect of life. The accompanying symptoms are so bothersome that they make learning impossible and reduce professional activity. Moreover, they impair mobility, disrupt the circadian rhythm, and cause emotional and sexual disorders.

Interstitial Cystitis Association

People who have been diagnosed with interstitial cystitis, as well as all patients who are still in the process of diagnosis, may turn to assistance to the IC help Polska Association. They can call you by calling 508 570 076 or by sending a message to [email protected] The IC help Polska association primarily provides mental support, which is extremely important for people struggling with this disease. In addition, it provides assistance at the beginning of diagnostics.

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