Interstitial cystitis

by JOhn F Dulemba, MD (USA)

For many years interstitial cystitis has been treated as a “step child” and, to a large degree, ignored.   We now know that IC is an immune system dysfunction and are able to both diagnose and treat this painful ailment.

What is interstitial cystitis?

For many years Interstitial Cystitis (IC) was thought to be a chronic bacterial infection. The theory was that the bacteria would be present under the epithelium, and become resistant to normal antibiotic treatment.

Since the bladder is part of the urinary tract system IC was managed in the past by urologists, but they seemed to have treated this disease as a stepchild, and ignored it to a great degree.

We now know that IC is part of an immune system dysfunction that allows the protective coating of the bladder to be denuded in small areas. The protective coating (glycosaminoglycanmucus-mucin layer) allows the urine to sit in the bladder for hours without causing any symptoms. When this layer is missing, the underlying cells can become irritated [1].


The symptoms of IC can vary greatly. The most common symptoms are:

  • blood in the urine (hematuria)
  • pain with intercourse (dyspareunia)
  • pelvic pain
  • pain with urination (dysuria), and
  • back pain.

Many women with IC urinate frequently during the day and night (nocturia). In a few patients, the symptoms can be so severe that travel outside of their home is impossible. They urinate as often as every five minutes.

Why does interstitial cystitis cause pain?

An analogy to why IC causes pain is to look at a baby in diapers. When the baby urinates it often smiles, but think of a baby with diaper rash. When the baby urinates it doesn’t smile. In fact it cries.

This is because urine is an irritant. Urine contains many by-products of waste, especially potassium. Potassium is most likely the cause of irritation in the bladder. Symptoms seem to increase when allergy seasons occur, or when the patient eats foods rich in potassium.

Who gets interstitial cystitis?

It is unknown how many undiagnosed cases of interstitial cystitis may be present in the gynaecologic pelvic pain population [2], but newer data shows the prevalence may be as high as 25% of women [3]. Some studies have shown a link with endometriosis, and IC has been labeled as “The Evil Twin” [1]. 80-90% of women with endometriosis have been identified with IC. This may help explain why some patients treated for endometriosis have not had relief from pain after surgical and medical therapies.


Diagnosis can be difficult, since some symptoms can be so mild that patients may not realise they have IC. When a woman suspects she may have IC, she should go to a specialist that deals with pelvic pain and endometriosis. Just as urologists have ignored IC, so have most gynaecologists.

Two ways to diagnose IC are:

  1. By cystoscopy (a camera in the bladder)
  2. By a potassium sensitivity test (PST)

Illustration of a cystoscopy

A cystoscopy is performed in the hospital as an outpatient procedure. The patient is asleep, and the bladder is overdistended with fluid while the camera is in place. As the bladder is drained, small bleeding areas will occur on the surface of the bladder. A biopsy can be performed at this time that may help in the diagnosis of IC. When blood is in the urine, this procedure helps confirm that a more serious problem doesn’t exist.

The PST is performed in the office while the patient is awake. A very small catheter is placed in the bladder, and a small amount of water is placed in the bladder. Even with IC this should not cause any pain. The water is drained from the bladder, and a new solution containing potassium is placed in the bladder. A normal bladder will not respond to this solution, but a patient with IC will experience pain or discomfort. If pain is felt, a rescue solution is immediately placed in the bladder to numb the bladder.


There are, and always have been, many ways to try and treat IC.

Early methods were permanent oral antibiotics and DMSO (dimethyl sulfoxide). A few patients responded to those treatments, but success was not overwhelming. In mild cases, some patients respond to Detrol and Ditropan.

The treatment that seems to have the greatest response is called Elmiron (related to Heparin, a blood thinner). This medication allows the coating of the bladder to regenerate. The patient may not see a response for three to six months, and the medication is relatively expensive. An antihistamine is also given to help diminish the release of histamine, especially during pollen season. The medicines may need to be taken forever, but when they work relief can be dramatic.

A helpful diet is one that is low in potassium. Foods high in potassium include: tomatoes, pineapple, chocolate, and Jalapeno peppers. If symptoms persist, then pain clinics and surgical options are available, but these are last step approaches.

Self help groups

Endometriosis patients have self help groups that can provide information and research, and the same is true for IC patients, where the Interstitial Cystitis Association’s website provides lots of useful information.

Hopefully, as more patients and physicians become aware of IC, more studies will be done to help diagnose and treat the IC patients.

  1. Chung MK, et al. Interstitial cystitis and endometriosis in patients with chronic pelvic pain: The “Evil Twins” Syndrome. JSLS 2005;9(1):25-9.
  2. Parsons CL, et al. Gynecologic presentation of interstitial cystitis as detected by intravesical potassium sensitivity. Obstet Gynecol 2001;98(1):127-32.
  3. Parsons CL and Tatsis V. Prevalence of interstitial cystitis in young women. Urology 2004;64(5):866-70.

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