Painful Bladder Syndrome (PBS) and Interstitial Cystitis (IC)

Interstitial cystitis and painful bladder syndrome are serious, debilitating conditions which have a major impact upon the life of the affected individual.

Painful bladder syndrome (also called chronic pelvic pain syndrome) includes a wide variety of painful conditions which affect the organs of the pelvis including the bladder, urethra, vagina, groin, lower back and the prostate in men.

Painful Bladder Syndrome (PBS) is characterised by a range of symptoms which involves frequency, urgency and bladder pain. Symptoms and pain varies widely and at the most severe end of the 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. It 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 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.”

Jeremy Ockrim, consultant female and reconstructive urologist and specialist in bladder services for Harley Street Urology

What are the symptoms of painful bladder syndrome and interstitial cystitis?

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. The pain is often exacerbated by sexual intercourse (ejaculation in men).

Worsening symptoms for women around the time of their periods.

Stress often worsens the symptoms.

How do painful bladder syndrome and interstitial cystitis start?

“I was in a lot of pain. When I walked, it felt as if I had a ton of bricks attached to my bladder. I had repeated infections and often had accidents, so you become scared to drink. It was a vicious circle and to be honest, at times I felt suicidal.”

Sally Richards, bladder reconstruction patient

Most patients describe an accurate time when their symptoms began, prior to which they were well. This is suggestive of an initiating factor triggering the syndrome (see next section describing the causes of IC). 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.

What are the causes of interstitial cystitis?

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 and damage become self-perpetuating. Damaged nerve endings become sensitised, and the pain can become centralised and continues to be perpetuated at higher levels 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.

How are painful bladder syndrome and interstitial cystitis diagnosed?

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 should include:

Urine analysis and culture
Imaging of the bladder, which may include ultrasound and possibly MRI to exclude urethral diverticulum
Urodynamic asssessment to assess bladder function
Cytoscopy and biopsy of the bladder wall
In men, laboratory examination of prostate cells

Treatment of painful bladder syndrome and interstitial cystitis

Fortunately, there are very effective treatments for most patients with PBS and IC. Patients often respond to different treatment modalities and combinations. As such, treatment must be individualised to the patient’s particular symptoms.

Diet

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, Julie Jenks is trained to treat and educate patients in these techniques.

“It is hugely rewarding to treat patients who have had substantial relief with acupuncture, often after many years of suffering”

Julie Jenks, specialist nurse practitioner,
Harley Street Urology

Medication

The majority of PBS and IC symptoms can be controlled with oral medication. Medications include anti-inflammatories, anti-cholinergics 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

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 two 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 two to four weeks. About 30 per cent of patients report an improvement.

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 eletrical 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 six 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 three 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

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 anesthesia 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 with 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.

Jeremy Ockrim is one of the few specialist Female and Reconstructive Urological Surgeons in the United Kingdom. He was trained at the Institute of Urology, University College Hospital London where he is now one of the three-consultant team who deliver tertiary care for complex incontinence, congenital and acquired bladder problems, including bladder pain syndromes. The referral base is nationwide, and the team perform over 100 complex bladder reconstruction procedures, 70 complex urogynaecological procedures, and 30 artificial urinary sphincter procedures each year. He is an Honorary Senior Lecturer at University College London where he has academic interests, as well as teaching the young Urologists of the future.

Find out more

▸ Read more about bladder reconstruction patient Sally Richards' experience of treatment.
▸ We specialise in the treatment of interstitial cystitis and painful bladder syndrome and offer the full spectrum of advanced treatments. Please contact us for further details.