What is Interstitial Cystitis?

Interstitial cystitis is a bladder condition which mostly affects older women. Symptoms may include lower abdominal or pelvic pain, urinary urgency and frequency, or urinary incontinence. It is a chronic (life-long) condition with no definitive treatment currently available.

Statistics

Interstitial cystitis affects women far more often than men: about 9 out of every 10 people who suffer from interstitial cystitis will be female. Most women will present between 40 and 60 years of age. Rarely, interstitial cystitis may also affect young children. Because the criteria for diagnosing interstitial cystitis have been unclear until recent years, it is not known how many people actually suffer from the condition. Estimates have suggested that as many as 62,000 Australians may have interstitial cystitis.

Risk Factors

The cause of interstitial cystitis is not currently known. Many theories have been suggested as to how interstitial cystitis develops. These include links with autoimmune conditions such as Sjogren’s syndrome or systemic lupus erythematosus. Other studies have suggested that vascular disease leading to poor blood supply to the bladder may play a role. Further research is needed before we have any definite answers. We do know that interstitial cystitis does not seem to run in families, and your family and friends cannot ‘catch’ interstitial cystitis from you.

Symptoms

Classic symptoms of interstitial cystitis include:

  • urinary frequency (needing to empty the bladder more than 8 times per day);
  • feelings of urinary urgency;
  • urinary incontinence or leaking; and
  • pelvic pain or discomfort, particularly pain associated with sexual activity.

The pain of interstitial cystitis is variable. Some patients complain of vaginal or penile pain, while others feel pain in their lower abdomen, lower back or thighs. It was once thought that interstitial cystitis pain was worse with a full bladder and relieved by bladder emptying, but this is now known to not to be the case. Pain may be mild to severe. The symptoms of interstitial cystitis often seem to occur in ‘flare-ups’ of 3-15 days. They may be worsened or brought on by hormonal changes, stress, sexual intercourse, consuming spicy foods, or drinking caffeinated or alcoholic beverages.

Clinical Examination

Examination of patients with interstitial cystitis is not usually very helpful. In some cases, pelvic examinations in women may find a tender anterior (front) wall of the vagina.

How is it Diagnosed

Interstitial cystitis is usually a clinical diagnosis, meaning there is no specific test available for the disease. However, a number of investigations may be useful to help your doctor assess the likelihood of interstitial cystitis as well as to exclude other conditions:

  • Urine tests: these are usually normal in patients with interstitial cystitis, but must be done to exclude other causes of urinary symptoms such as infection.
  • Symptom questionnaires and voiding diaries: your doctor may ask you to keep a record of your symptoms and how often you go to the toilet. Frequent bladder voiding of small quantities may suggest interstitial cystitis.
  • Cystoscopy and biopsy: this involves using a small camera to look at the bladder, and taking a sample of the bladder tissue to look at under a microscope. It may be done to exclude other causes of symptoms such as cancer. In some patients with interstitial cystitis, the bladder may be inflamed or ulcerated.
  • Potassium sensitivity test: this test can be done in the doctor’s office. The bladder is catheterised and filled with two fluids: first water, then a solution containing potassium. If the potassium solution causes pain or urgency, a diagnosis of interstitial cystitis is more likely.

Prognosis

Interstitial cystitis is a chronic (life-long) and generally progressive disease for which we have no specific cure. In most people, symptoms occur intermittently, with periods of worsening pain and urgency followed by weeks or even months of no symptoms at all. Some patients will experience a worsening of symptoms over time, while for others the disease severity will not change. Rarely, symptoms may disappear altogether. Many patients with interstitial cystitis report changes to their quality of life with the disease, including sleep disturbances, inability to work, and discomfort on sexual activity. Treatment may minimise these disturbing symptoms but may not make them resolve completely.

Treatment

There is no definitive treatment available for interstitial cystitis. Instead, treatment generally aims to keep symptoms under control. It is important to recognise that the most effective treatment for one patient may be different to that for another. Treatment options can be divided into general measures, medical treatments (both oral and those given directly into the bladder), and surgical treatment.
General measures:

  • Behaviour modification: some patients find bladder training exercises, which slowly train the bladder to hold larger volumes before the urge to use the toilet appears, very effective. This treatment is best for patients who have mostly urinary symptoms of frequency or urgency, rather than pain.
  • Bladder distension: this treatment involves inserting a catheter into the bladder and stretching the bladder walls by filling it with water. It is usually done under some kind of anaesthetic as the procedure may be uncomfortable. How the treatment works is still unclear, but some patients have symptom relief for up to 12 months following bladder distension.
  • Dietary changes: some patients can identify dietary triggers for their symptoms. These commonly include alcohol, chocolate, coffee, tea, citrus fruits or juices and some other foods. Avoiding identified triggers may be enough to reduce symptoms in some patients.

Medical therapies: oral

  • Sodium pentosanpolysulfate (PPS, or Elmiron) is an oral medication which may improve symptoms in some patients. It probably works by a number of different mechanisms, including reducing inflammation in the bladder. The treatment may take 3-6 months to have full effect, and about 30% of patients will notice a significant difference in their symptoms.
  • Some types of antidepressants, and in particular amitryptylene, have been used in management of IC. They probably work by a pain-relieving (analgesic) effect, or may even work locally in the bladder to reduce inflammation.
  • Other oral medications, including hydroxyzine, cimetidine, antibiotics and cyclosporine, have not been shown to be beneficial in treatment of interstitial cystitis.

Medical therapies: intravesical (given directly into the bladder)

  • Dimethyl sulfoxide (DMSO) is a chemical solvent which may have pain-relieving, anti-inflammatory and muscle relaxing effects. It is given straight into the bladder via a catheter, either alone, or in combination with other medications including steroids, heparin and local anaesthetic. Side effects include a temporary worsening of bladder symptoms in 10% of patients. Some trials have shown significant improvement of symptoms with DMSO use in 50-90% of patients.
  • Heparin (a type of anticoagulant) given directly into the bladder twice weekly may improve symptoms in some patients.
  • There is no clear evidence to support the use of intravesical Bacillus Calmette-Guerin (BCG), capsaicin, oxybutynin or botulinim toxin type A in treatment of interstitial cystitis.

Surgical treatment Surgical treatments for interstitial cystitis should only be considered after all other management options have been trialled. Most patients find they can effectively manage their symptoms without surgery, using one or more of the above methods. Surgical treatment options include using nerve modulation techniques to change perception of pain symptoms, bladder surgery to increase bladder capacity, or total removal of the bladder. With all of these options, there is a risk that symptoms will persist or return after surgery.

References

  1. Cotran RS, Kumar V, Collins T. Robbins Pathological Basis of Disease Sixth Ed. WB Saunders Company 1999.
  2. Erickson DR. ‘Interstitial cystitis: update on etiologies and therapeutic options,’ Journal of Women’s Health and Gender-Based Medicine. 1999, 8(6):745-58
  3. Parsons, CL. ‘Clinical features and diagnosis of interstitial cystitis/painful bladder syndrome’ [online]. UpToDate.com. 2006. Available at URL: http://www.uptodate.com (last accessed: 25/7/06)
  4. Parsons M, Toozs-Hobson P. ‘The investigation and management of interstitial cystitis,’ The journal of the British Menopause Society. 2005, 11(4):132-139
  5. Rosamilia, A. ‘Painful bladder syndrome/interstitial cystitis,’ Best Practice & Research Clinical Obstetrics and Gynaecology. 2005, 19(6):843-859
  6. Rovner, E. ‘Interstitial cystitis’ [online], eMedicine. 2005. Available at URL: http://www.emedicine.com/med/topic2866.htm (last accessed: 23/8/06)