Dr. Warren Lo Hwa Loon, Consultant Urologist;
Managing interstitial cystitis, also called a chronic painful bladder syndrome that is poorly understood and causes long-term pelvic pain and urination problem
For a long time, Tiffany*, a 45 year old woman from Kuala Lumpur experienced a rather mysterious problem. She suffered from persistent pain in her pelvis and had to make urgent, frequent visits to the toilet to pee. She had gone to see several doctors in town but they couldn’t seem to agree on the right treatment for her. On the surface, it might have looked as if she was suffering from a typical urinary infection or an overactive bladder. But treating her for these symptoms did not appear to make life better – her problems showed no signs of going away despite being put on various medications. A few doctors were starting to manage her with skepticism and it came to a point where she felt both physical pain and emotional despair as she tried to convince others that her pain was real.
Tiffany was suffering from what is often labelled as ‘painful bladder syndrome.’ Medically, this condition is called interstitial cystitis.
Interstitial cystitis is a condition characterized by frequent urges to urinate, both during the day and the night, as well as by recurring pelvic pain of unknown cause and varying degrees. For women, it could worsen during their menstrual period or during sexual intercourse.
While interstitial cystitis is more common in women, men are not spared. An estimated 2.7 percent of women and 1.3 percent of men worldwide suffer from the complex symptom. Misdiagnosis, wrong judgement and poor understanding of this disease among medical personnel give reason to believe that these figures paint a poor picture of the real situation due to under reporting.
Like Tiffany, most patients are misled into thinking that they have overactive bladders or urinary tract infections. While it needs to be stressed that either overactive bladders or urinary tract infections may co-exist with interstitial cystitis, issues arise when there is a misdiagnosis. For one, there will be unnecessary consumption of multiple doses of antibiotics and bladder relaxants (typical medications for the former conditions) which have their respective side effects. Frequent antibiotics consumption can also lead to antibiotic resistance.
Patients like Tiffany make frequent visits to multiple doctors to seek opinions but end up spending a lot of money without getting their problems solved.
This can take an emotional toll on them as they feel that nobody actually has the insight or in depth knowledge to treat their condition. Some persistent patients are even dismissed as having psychological issues.
Compounding the issue is an indifferent attitude displayed by some doctors towards this disease, something which has been known to contribute to some patients developing suicidal tendencies as they suffer in prolonged silence and give up hope.
It is a harsh truth that patients cannot expect a full recovery as this disease is notoriously known to be untreatable. They may suffer from frequent relapses though out their lives. The good news is they can be treated effectively enough to enable them to return to their old routines and enjoy a normal lifestyle. Some experience very long silent phases before another relapse.
What causes it?
Interstitial cystitis is a great mimicker. It requires careful detailed medical history probes.
Physical examinations may not reveal much and blood and urine tests could also be negative.
Ultrasound of the kidney or bladder and bladder function studies may shed some light.
Bladder scopes may reveal normal bladder lining, mild inflammatory changes or ulcerations which are not particularly specific to interstitial cystitis. Due to the vague presentation and negative investigation results, many doctors consider it as the ‘diagnosis of exclusion.’
Conditions such as systemic lupus erythematosus (SLE), migraine, endometriosis, irritable bowel syndrome, chronic fatigue syndrome and fibromyalgia are commonly found to be associated with interstitial cystitis. This undoubtedly makes diagnosis more difficult and confusing as each disease can have its own bladder dysfunction problems.
The disease’s etiopathology remains inconclusive. Many think that a defect in the bladder tissue, which may allow irritating substances in the urine to penetrate the bladder, contributes to this condition. Some believe that a specific type of inflammatory cell, called a mast cell, releases histamine and other chemicals that lead to the symptom complex. Other theories suggest changes in the nerves that carry bladder pain sensation, autoimmune conditions resulting in the body’s immune system attacking the bladder, as well as allergy reactions, may each play a part in it.
Most treatments are individually tailored to the patient’s symptoms and bladder size.
As mentioned, most people present with urinary tract infection-like symptoms such as frequent urges to urinate, chronic pelvic pain, painful sexual intercourse and pain and discomfort while passing urine. It is therefore important to rule out urinary tract infection before embarking on treatment.
Medications may work for a number of patients, but they may present side effects such as insomnia, hair loss, dry mouth and constipation. Patients resistant to medications will be offered bladder instillation therapy before proceeding to surgery. Various surgical options such as bladder Botox injection to paralyse the nerve fibres and bladder hyper distension with fluids to break the underlying nerve fibres have been found to be useful in some patients.
Implantation of a sacral neuromodulation (i.e. a bladder pacemaker) to modulate the nerves and reduce hypersensitivity of the bladder is reserved for patients with intractable symptoms. Some patients with small bladders may have to opt for a major surgery where the small intestine is incorporated into the bladder to enlarge bladder capacity and urine storage.
The length of treatment depends on each patient’s progress and relapse. Patients should be made well aware of about the realities of the disease, that treatment can only aim to reduce symptoms and that it may be a lifelong problem. Being an incurable disease, it is important for patients to have realistic expectations.
Behavioral therapy and lifestyle modifications, such as avoidance of caffeinated products, are also important.
As for Tiffany – after some very thorough investigations, she and her health care provider now understand what they are dealing with. Her main goal is to get her life back on track and regain some personal stability with her health condition well-understood and managed.
*Not her real name