Painful bladder syndrome (PBS) and interstitial cystitis (IC)
The pain from interstitial cystitis and the debilitating impact it can have is poorly understood, often underestimated and the diagnosis often delayed. Fortunately, we have good, effective treatments for both PBS and IC. Early diagnosis and treatment can help control the symptoms and alleviate chronic suffering, which many patients endure over many years.
PBS is characterised by a symptom complex, which involves frequency, urgency and bladder pain. At one end of this spectrum is Interstitial Cystitis (IC). This is very different to standard cystitis, which is caused by a bacterial urinary tract infection and responds to antibiotics.
IC is a chronic inflammatory condition of the bladder wall (in the same way that rheumatoid arthritis is an inflammatory condition of joints), is not caused by bacteria and will not respond to antibiotics. It affects women more often than men, with nine out of ten sufferers being female. Onset is typically after the age of 40, although it can occur at any age.
- The classical symptoms of PBS/IC are frequency, urgency and bladder (pelvic) pain
- In early or mild cases, the need to go to the toilet very frequently may be the only symptom. In more severe cases, people may need to go to the toilet up to 60 times during a 24 hour period
- An urgent need to urinate frequently day and night. This is often associated with a decreased bladder capacity
- Pain, pressure and tenderness around the abdomen, bladder, urethra, vagina (prostate in men), pelvis and perineum
- A significant characteristic of PBS/IC is pain increases during urination
- Pain is often made worse by sexual intercourse (ejaculation in men)
- Symptoms may worsen for women during menstruation
- Stress often worsens symptoms
Although symptoms often have a mild onset, they typically worsen rapidly with time and often with a cyclical pattern. The cycles of pain may vary from mild to severe and in the severe cases are debilitating. In some patients there is a ‘honeymoon period’ where symptoms improve for a period (usually weeks) following their acute onset, before returning to a similar pattern as before.
Symptoms can vary from day to day. If left untreated, IC can lead to reduced bladder capacity, bleeding from the bladder lining and more rarely bladder ulcers. In long standing cases scarring and stiffening of the bladder may make the bladder pressurised and result in incontinence and kidney damage.
It is not clear exactly what causes interstitial cystitis. One theory is that IC is an autoimmune response following a bladder infection. The infection and the body’s defences damage the lining of the bladder, allowing urinary toxins to infiltrate the bladder wall and set up an inflammatory reaction. The inflammatory reaction damages nerve endings, which become sensitised, and the pain worsens, independent of the bladder or other pelvic organs.
One field 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 toxins within urine. Researchers have found that this protective layer of the bladder is “leaky” in about 70 per cent of IC patients. There is a theory that this may allow substances in urine to pass into the bladder wall where they might trigger interstitial cystitis.
PBS is a diagnosis based upon the symptom complex described by patients. It is important to exclude other disorders of the urinary system that may cause similar symptoms to PBS / IC. There are strict criteria, which define PBS and particularly IC, based on laboratory (urine) tests, imaging of the bladder and pelvis, urodynamics, which assess bladder function, cystoscopic visualisation of the bladder and biopsy of the bladder wall. Tests include:
- Urine analysis and culture
- Imaging of the bladder, which may include ultrasound and possibly MRI to exclude urethral diverticulum
- Urodynamic assessment to assess bladder function
- Cystoscopy and biopsy of the bladder wall
- In men, laboratory examination of prostate cells
Fortunately, there are very effective treatments for most patients with PBS and IC. Patients often respond to different treatment modalities and combinations, and treatment is individualised to the patient’s particular symptoms.
There is good evidence that dietary triggers exacerbate PBS symptoms, although these are not predictable between individual patients. Common triggers are alcohol, tomatoes, spices, chocolate, caffeinated and citrus beverages. High-acid foods may contribute to bladder irritation and inflammation. Some people also note that their symptoms worsen after eating or drinking products containing artificial sweeteners. Eliminating various items from the diet and reintroducing them one at a time may determine which, if any, affect a person’s symptoms. However, maintaining a varied, well-balanced diet is important.
Behavioural therapy and acupuncture
Many patients are helped by bladder training and pelvic floor exercise regimes. Biofeedback can help patients monitor their response. In some patients pelvic floor trigger points may aggravate pain. Physical manipulation, acupuncture and electrical stimulation may help alleviate these triggers. Our nurse specialist is trained to treat and educate patients in these techniques.
The majority of PBS and IC patients can be managed, and their symptoms controlled by oral medication. Medications include anti-inflammatories and anti-histamines. For patients with more severe symptoms anti-depressants and anti-epileptic drugs can be used to dampen the nerve responses. These drugs are often used in combination and can be very effective treatments. These drugs should only be used under specialist advice.
Bladder distension or stretching is used for diagnosis and therapy of interstitial cystitis. Under a general anaesthetic, surgeons fill the bladder with fluid and keep it stretched for 2 minutes. Reduced bladder capacity, redness, inflammation and bleeding are suggestive of IC. A biopsy is often taken to look for mast cells in the bladder wall. These cells produce histamine, and an increased number is also suggestive of IC diagnosis.
Bladder distension is often therapeutic. Many people find there is an improvement after the procedure. Researchers are not sure why distension helps, but some believe it may increase capacity and interfere with pain signals transmitted by nerves in the bladder. Symptoms may temporarily worsen 24 to 48 hours after distension, but should return to normal levels or improve within 2 to 4 weeks. About 30 per cent of patients report an improvement.
During a bladder instillation, the bladder is filled with a solution that is held for varying periods of time, from a few seconds to 15 minutes, before being drained through a narrow tube called a catheter. Instillations are usually repeated on a weekly cycle for 6 weeks and repeated as needed depending on symptoms.
Drugs that are used for bladder instillations include dimethyl sulfoxide (DMSO) , sodium bicarbonate, hydrocortisone and local anaesthetics. Most people with PBS and IC who respond to DMSO notice an improvement in symptoms 3 or 4 weeks after the first 6 to 8-week cycle of treatments.
Electrical nerve stimulation
Mild electrical pulses can be used to stimulate the nerves to the bladder. This can be accomplished either through the skin or with an implanted device.
The method of delivering impulses through the skin is called transcutaneous electrical nerve stimulation (TENS). With TENS, electrical stimulation is used on trigger points on the lower back, pubic area, perineum (between the legs) or using special devices into the vagina in women or into the rectum in men. Sessional treatment usually takes place on a weekly basis. Electrical pulses help strengthen pelvic muscles that help control the bladder, and trigger the release of substances that block pain.
A second method of electrical stimulation is called percutaneous tibial electrical nerve stimulation (pTENS). In this case electrical stimulus is applied through acupuncture needles placed in the ankle. The needles stimulate the tibial nerve, which also supplies the bladder. pTENS is performed in 30 minute sessions weekly over 6 weeks.
The most recent development in electrical stimulation is implantation of sacral nerve stimulator (SNS). In this technique, the nerves to the bladder are directly stimulated through the sacrum in the lower back. An external test implant is worn for 3 weeks. Patients that have responded well in early trials are offered a permanent implant of a ‘bladder pacemaker’ implanted in the fat over the upper buttock.
Surgery should be considered only if all available treatments have failed and the pain is disabling. Surgical intervention for BPS and IC is complex, and should only be done by specialist surgeons with extensive experience of this work.
Fulguration and resection of ulcers
Fulguration involves burning bladder (Hunner’s) ulcers with electricity or a laser. When the area heals, the dead tissue and the ulcer fall off, leaving new, healthy tissue behind. Resection involves cutting around and removing the ulcers. Both treatments are done under anaesthesia and use special instruments inserted into the bladder through a cystoscope.
Bladder augmentation / substitution
This is a surgical treatment designed to make the bladder larger. The inflamed sections of the patient’s bladder are removed, leaving only the base of the bladder and healthy tissue. A piece of the patient’s colon is then removed, reshaped, and attached to what remains of the bladder. The augmented bladder has greater capacity, and the coordinated bladder contractions (spasms) are prevented. Most patients will have to catheterise to empty the augmented bladder. The effect on pain varies greatly; PBS can sometimes recur on the segment of colon used to enlarge the bladder.
Bladder removal or cystectomy
This is a more rarely used surgical option, only suitable for the most severe and debilitating cases. Once the bladder has been removed, different methods can be used to reroute the urine.
A neobladder is formed from bowel refashioned into a pouch. This is then attached to the urethra so that the patient can empty by either abdominal pressure or in most cases catheterisation. For patients unable to catheterise through a painful urethra, a tube can be fashioned from appendix or bowel to empty the bladder through the umbilicus or abdominal wall. These are complex reconstructive surgeries for motivated patients. Only a few surgeons have the special training and expertise needed to perform these procedures.
A more simple diversion of urine is to attach the ureters to a piece of colon that opens onto the skin of the abdomen. This procedure is called a urostomy and the opening is called a stoma. Urine empties through the stoma into a bag attached to the abdominal wall under the clothing. Serious potential complications of these procedures include kidney infection, small bowel obstruction and metabolic (salt) disturbance.