A bladder malady
Interstitial cystitis is characterised by frequent urges to urinate, both during the day and night, as well as by a recurring pelvic pain of unknown cause and of varying degrees.
Interstitial cystitis is characterised by frequent urges to urinate, as well as a recurring pelvic pain of unknown cause and of varying degrees.
TANYA* experienced a rather peculiar problem. She had been having persistent pain in her pelvis, and frequently had urgent urinations.
The 40-year-old had seen several doctors, but none were able to determine what the problem was. Even to trained medical professionals, it looked as if she was suffering from a typical urinary infection or an overactive bladder.
Treating her for these symptoms did not improve her condition, as the symptoms showed no signs of going away.
Some doctors doubted her case. It was traumatizing for Tanya, as she had to endure both physical pain and emotional despair. Not only she was trying to find the right treatment, but she also had to convince others that her pain was real.
Tanya’s condition is often labelled as “painful bladder syndrome”, or medically known as interstitial cystitis.
Pin-pointing the issue
It is frustrating for patients like Tanya who spend a lot of time and money seeking treatment, but rarely get the problem solved.
Like her, some patients are even viewed as having imaginary issues. To make things worse, there is an indifferent attitude displayed by some doctors towards this disease.
This indifference has been known to contribute to some patients losing hope, developing psychological stress and even suicidal tendencies in their prolonged suffering.
So what do we know about this mysterious problem?
Interstitial cystitis is a condition characterised by frequent urges to urinate, both during the day and night, as well as by a recurring pelvic pain of unknown cause and of varying degrees.
For women, it could get more intense during menstruation or sexual intercourse.
Interstitial cystitis is more common in women, although men are not spared. An estimated 2.7% of women and 1.3% of men worldwide suffer from this condition, which is also called a “symptom complex” – a group of symptoms occurring together, and characterising a particular disease.
Misdiagnosis and poor understanding of this disease among medical personnel may indicate that the real figures are much higher due to under-reporting.
Most patients are incorrectly diagnosed as having 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 instance, unnecessary consumption of multiple doses of antibiotics and bladder relaxants (typical medications for overactive bladders) has its respective side effects. Frequent antibiotic consumption can also lead to antibiotic resistance.
A grey area
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 role.
All in all, interstitial cystitis is a great mimicker. Relying on physical examinations and blood or urine tests may not reveal anything useful, so a careful and detailed probe of the patient’s medical history is crucial.
Due to the vagueness of the symptoms, many doctors turn to a “diagnosis of exclusion”.
A kidney or bladder ultrasound, and bladder function studies may shed some light.
Bladder scopes may reveal normal bladder lining, mild inflammatory changes or ulcers, but these are not particularly specific to interstitial cystitis.
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 present its own bladder dysfunction problems.
Individualised treatments
To tackle this disease, 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 prior to commencing any 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 moving on to surgery. Various surgical options such as bladder Botox injections 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 device (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 major surgery, where the small intestine is incorporated into the bladder to enlarge bladder capacity and urine storage.
Lifelong impact
Patients need to fully understand the reality of this disease, that treatment can only help to reduce the symptoms and that it may be a lifelong problem.
As interstitial cystitis is notoriously known to be an incurable disease, it is important to have realistic expectations, and patients cannot expect a full recovery. They may suffer from frequent relapses thoughout 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 problem-free periods before having a relapse.
The length and choice of treatment for each patient depends on their progress and relapse. Behavioural therapy and lifestyle modifications, such as avoidance of caffeinated and alcohol products, are also crucial.
As for Tanya – after thorough investigations, she and her healthcare provider now understand what they are dealing with. She has managed to get her life back on track, and regained some personal stability with her health condition well-understood and managed.
If you are experiencing similar problems, and feel that you have come against a wall in your diagnosis and treatment, do not hesitate to speak with your urologist to explore this angle, if you have not done so.
If managed properly, you stand to gain both physical comfort and peace of mind.