Interstitial cystitis affects 500,000 people in the UK, who are told that there is no cure for it and they must live with it. Patients have often been on an exhausting route visiting GPs, urologists and gynaecologists with little success. They feel that the orthodox treatment seems to be purely symptomatic and unable to address the underlying cause of this very debilitating condition.
What is Interstitial Cystitis (IC)?
Interstitial cystitis is a very uncomfortable and stressful disorder, which is characterized by chronic urinary urgency (feeling the need to urinate immediately) and frequency (frequent urination) with or without pelvic pain. Symptoms of interstitial cystitis may vary among individuals and may even vary with time in the same individual. Many people have to live life around their bladder because of the unpleasant symptoms. The term “cystitis” refers to any inflammation of the bladder. In contrast to bacterial cystitis, which results from an infection in the bladder, no infectious organism has been identified in people with interstitial cystitis. Interstitial cystitis is diagnosed when the symptoms occur without evidence for another cause of the symptoms.
About 90 percent of patients with interstitial cystitis are women and the average age of onset is 40, though people of any age can be affected. Although interstitial cystitis has not been considered a hereditary disorder, multiple cases have occurred among some families, prompting further research into a genetic link.
Women with interstitial cystitis are more likely to have had frequent urinary tract infections and to have had previous gynaecological surgery than women without interstitial cystitis. Certain chronic illnesses have been described as occurring more frequently in people with interstitial cystitis than in the general population:
Systemic lupus erythematosus (Lupus or SLE)
Irritable bowel syndrome (IBS)
Vulvodynia (chronic discomfort in the vulvar area)
Interstitial cystitis has been classified into two forms, ulcerative and non-ulcerative, depending on the presence or absence of ulcerations in the bladder lining. Star-shaped ulcerations in the bladder wall are known as Hunner’s ulcers. The ulcerative (classic type) of interstitial cystitis is found in less than 10% of cases. Scarring and stiffening of the bladder wall may occur as a result of the long term inflammation, leading to a decrease in bladder capacity. Areas of pinpoint bleeding may be seen on the bladder wall.
What is the cause of interstitial cystitis?
No one in orthodox medicine knows exactly what causes interstitial cystitis but because the symptoms are varied, most researchers believe that it represents a spectrum of disorders rather than one single disease. One area of research has focused on the layer that coats the lining of the bladder called the glycocalyx. This consists mainly of substances called mucins and glycosaminoglycans (GAGs). This layer normally protects the bladder wall from toxic effects of urine. Researchers have found that this protective layer of the bladder is “leaky” in about 70% of interstitial cystitis patients. There is a hypothesis that this may allow substances in urine to pass into the bladder wall where they might trigger interstitial cystitis.
Potassium is one substance that may be involved in damage to the bladder wall. Researchers have isolated a substance known as antiproliferative factor (APF) that appears to block the normal growth of cells that make up the lining of the bladder. APF has been identified almost exclusively in the urine of people suffering with interstitial cystitis. Research is underway to clarify the potential role of APF in the development of interstitial cystitis.
Other theories about the cause of interstitial cystitis are that it is a form of autoimmune disorder or that infection with an unidentified organism may be producing the damage to the bladder and the accompanying symptoms.
Our approach looks for all parts of the patient’s health jigsaw to gain the big picture. We address all the underlying issues in our interstitial cystitis treatment.
What are the signs and symptoms of interstitial cystitis?
The symptoms of interstitial cystitis vary greatly from one person to another but have some similarities to those of a urinary tract infection. They include:
Decreased bladder capacity
An urgent need to urinate frequently day and night
Feelings of pressure, pain, and tenderness around the bladder, pelvis, and perineum (the area between the anus and vagina or anus and scrotum) which may increase as the bladder fills and decrease as it empties
Painful sexual intercourse (dyspareunia)
Discomfort or pain in the penis and scrotum
In most women, symptoms usually worsen around the time of their periods. Stress may also worsen the symptoms. The symptoms usually have a slow onset, and urinary frequency is the most common early symptom. As interstitial cystitis progresses over a few years, cycles of pain (flares) and remissions occur. Pain may be mild or so severe as to be debilitating. Symptoms can vary from day to day.
How is interstitial cystitis diagnosed?
Because the symptoms of interstitial cystitis are similar to those of other disorders of the urinary system and because there is no definitive test to identify interstitial cystitis, doctors must exclude other conditions before making a diagnosis of interstitial cystitis. Among the disorders to be excluded are urinary tract or vaginal infections, bladder cancer, bladder inflammation or infection caused by radiation to the abdomen, eosinophilic and tuberculous cystitis, kidney stones, endometriosis, neurological disorders, sexually transmitted diseases, urinary tract infection with small numbers of bacteria, and, in men, chronic bacterial and non-bacterial prostatitis. Medical tests that help identify other conditions include a urinalysis, urine culture, cystoscopy, biopsy of the bladder wall and, in men, laboratory examination of prostatic secretions.