Interstitial Cystitis: Don’t dismiss the pelvic pain

Interstitial Cystitis is a painful condition related to your bladder that can severely restrict your life. Pay attention to your body's signals to seek proper treatment

woman in painWe often tend to ignore mild pain in any part of our body attributing it to stress or exertion. When it disappears in some days, we think all's well again. Unfortunately, in the case of pain in the pelvic area [lower abdomen], that's not always the case. Any pain in that area should be addressed as soon as possible to prevent conditions like Interstitial Cystitis [IC].

What is IC

Interstitial Cystitis/Painful Bladder Syndrome [PBS] is a chronic disorder of the urinary bladder characterised by variable degree of pelvic pain, frequency and urgency. Though believed to be a rare disorder and non-existent in India, it is one of the emerging but most misdiagnosed diseases world over. The awareness about IC in India is lacking. It is a clinical entity that is not well-defined, poorly understood, inadequately treated and extraordinarily bothersome.

The cause of IC/PBS is still unknown. It is believed that the primary defect lies in the bladder lining [where the surface glycosaminoglycan {GAG} layer is damaged], which allows absorption of substances such as potassium and urea into the bladder wall. This eventually leads to tissue damage and pain as well as symptoms of frequency and urgency. Activation of mast cells with histamine release and neurogenic inflammation are also considered important factors in the cause of IC. These changes cause up regulation of the sensory nerves of the bladder resulting in a state of 'neurologic wind–up', which presents as hyperalgesia [increased sensitivity to pain]. The symptoms of IC/PBS are often misdiagnosed as a 'common' bladder infection [cystitis] or a urinary tract infection. However, IC has not been shown to be caused by bacterial infection, and thus treatment by antibiotics is ineffective.

Symptoms of IC

The characteristic symptoms of IC are pain, frequency and urgency:

  • Pain, pressure, discomfort or unpleasant sensation that may increase as the bladder fills; urinating often alleviates the pain and gives a temporary sense of relief
  • Suprapubic pain, pelvic pain, sometimes extending to the lower part of the back; pain may also be felt in the groin and thighs
  • Pain in the vagina [in women]
  • Pain in the penis, testicles, scrotum and perineum [in men]
  • Pain in the urethra and rectum
  • Pain with sexual intercourse in both men and women [dyspareunia]
  • Lack of sleep due to waking up several times at night to urinate
  • Difficulty in passing urine, dribbling
  • Desire to pass urine again and again.

Diagnosis

To diagnose IC/PBS these symptoms must be present for more than 4 – 6 weeks. Once a diagnosis of IC/PBS is made, your healthcare professional can discuss treatment options. Keep in mind that most treatments take time to work, and you will need to be patient. There is currently no cure for IC/PBS, but there are treatments that make you comfortable. IC/PBS is not a harmful disease. Treatment is difficult, but not impossible.

Impact on life

IC can have a major impact on the social, psychological, occupational, domestic, physical and sexual life of patients. The frequent and urgent need to urinate can affect work, travel, visits to friends, or even shopping. When outside their home, patients are always dominated by the question, "Where am I going to find the next toilet?" Before every outing, patients often carefully plan a network of toilets, known as 'toiletmapping'. Many patients say, "If I don't think I will be able to find a toilet, I simply don't go out".

Treatment options

Medication: Pentosan Polysulfate Sodium is the first and only FDA-approved oral treatment for IC. Unfortunately, it is not available in India yet.

Lifestyle changes: Some patients find that avoiding certain foods such as caffeine, alcohol, tomato products, citrus, fruits, chocolates, soda, and supplements containing vitamin C and potassium helps. Healthcare professionals may suggest an 'elimination diet'. While on this diet, a patient begins with bland foods, and then slowly adds various foods and beverages, one at a time, to see which ones cause symptoms to appear or worsen. Stress is also believed to have a profound impact on IC and is often associated with symptom flare-ups. Relaxation exercises, stress management, yoga, or massage may help reduce stress and its negative impact on health.

Therapeutic hydrodistension: Though controversial, I have found it useful. Hydrodistension gives initial relief in most of the patients, where the urologist distends your bladder with water or saline under anaesthesia.

Intravesical therapy: Here a cocktail of drugs in liquid form are administered in the bladder via a catheter.

Intravesical Botox injection: This is done in a patient who does not improve with the above-mentioned therapies. Botox is injected in the bladder through endoscopy.Neuromodulation: In this, a pacemaker is implanted in the lower back or perineum to control symptoms.

Surgery: This may be the last resort, if all other treatments fail. It is specially indicated for patients with small capacity bladder.

There is no way to know which treatment will work for you, so you and your healthcare professional should watch your progress and decide if a different approach is necessary.

IC in the elderly

IC may cause additional problems in the elderly. Frequent urination at night may be hazardous and can increase their risk of falls and fractures. Installing a commode chair next to the bed could be an option. Some of the medications used to treat IC can have cognitive side-effects, which may be more pronounced in the elderly and further exacerbate any existing memory impairment or confusion.

Complementary relief

There are many complementary therapies and self-help possibilities that may alleviate symptoms, relax the patient and help to achieve a better quality of life. Because of the limited effectiveness of traditional treatments, patients tend to seek other non-medical forms of therapy for relief. These therapies achieve body-mind relaxation, with progressive relaxation of tense pelvic floor muscles, which may help in reducing pain. Any therapy where the patient can relax and have time to discuss their symptoms and impact of these symptoms on their life is likely to have a stress-reducing effect. Complementary approaches include biofeedback, which helps the patient to gain awareness and greater control over muscles that cause pain, hypnotherapy, trigger-point therapy, myofascial pain therapy, pelvic floor re-education, acupuncture and herbal supplements. Relaxation of any kind can help in reducing stress, including yoga, T'ai Chi, meditation, breathing exercises [slow diaphragmatic breathing], regular exercise, walking [even short distances], swimming, warm baths, hydrotherapy, and guided imagery.

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1 COMMENT

  1. Doctor,

    I totally agree with you.

    Your simple way of presenting this article is great and i strongly feel that you have dedicated yourself to this field.

    My mother 60 years old has been suffering from this past 3 years. We visited many leading Urologists in Chennai and no progress, only my mother lost her confidence.

    We wish you good luck in your endeavour

    Regards,
    Krishna

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