Why diagnosing Interstitial Cystitis is difficult

Interstitial Cystitis (IC) is often considered a rare disease. However IC is not really a rare disease but a neglected disease which doesn’t get diagnosed easily or worse gets misdiagnosed. In India as the awareness is very low many people just live with it without ever getting diagnosed. Many patients start believing that IC is part of the normal progression of life.

About 90% of IC patients are female. Most women go to a gynaecologist whenever they have any issue “down under” and as the awareness of IC among gynaecologists are abysmal in maximum cases the patient gets misdiagnosed. Even general practitioners are not able to diagnose it properly and often confuse it with some other disease.

Clinically it is very difficult to ascertain IC. Even for an urologist it is not an easy task and often they have to conclude IC through a process of elimination. Once they eliminate other diseases they can confirm it as IC. The diseases with which IC is commonly confused or rather the diseases which should be ruled out to confirm IC are as follows:

Urinary Tract Infection (UTI) – This is the commonest disease that IC is confused with. The patients of IC suffer from ALL the symptoms of UTI like frequency, urgency, burning sensation while passing urine and lower abdominal pain. Therefore in most cases when an IC patient goes to a doctor he/she is prescribed medicines of UTI especially antibiotics.

Endometriosis- IC is also commonly confused with endometriosis. In Endometriosis a patient suffers from chronic pelvic pain which increases during menstruation. Similarly an IC patient also suffers from pelvic pain which flares up during menstruation. Patients of endometriosis feel pain during sex; similarly IC patients also feel pain.

Urogenital Tuberculosis- The symptoms of this disease include urinary frequency, painful urination or dysuria and loin discomfort. All symptoms are similar to IC symptoms. In India tuberculosis is more common therefore earlier IC patients were treated as TB patients.

Urethritis- Here the symptoms again include painful or difficult urination, burning urethra and sore urethra.

Vaginitis or vulvovaginitis - Many symptoms of Vaginitis overlaps with IC like vaginal irritation and inflammation, painful sexual intercourse and painful urination.

Vulvodynia- Pain is the most notable symptom of vulvodynia, and can be characterized as a burning, stinging, irritation or sharp pain that occurs in the vulva and entrance to the vagina. It may be constant, intermittent or happen only when the vulva is touched. It can occur during or after sexual activity, when tampons are inserted, or when prolonged pressure is applied to the vulva, such as during sitting, bike riding, or horseback riding. Even an IC patient suffers from these symptoms.

Bladder Cancer- Even though the most common symptom for bladder cancer is blood in the urine however there are other symptoms which mimic IC like  pain during urination, frequent urination, or feeling the need to urinate without being able to do so and pelvic pain.

Neurogenic Bladder- IC is also confused with neurogenic bladder as patients are unable to void properly and often have difficulty in urination.

Fibromyalgia- Patients suffering from this disease also suffer from chronic pain, bladder disorder, sleep disturbance and nerve pain.

Vitamin B12 deficiency- IC patients often suffer from burning sensation in the feet. A person who has Vitamin B12 deficiency also suffer from this therefore often an IC patient is given vitamin B12.

Psychological problem- In extreme cases when medical practitioners are unable to find any disease they consider the patient is merely imagining the pain and treat them as psychiatric patients.

The symptoms of interstitial cystitis overlap with many other diseases. So it is not easy to pinpoint IC so easily. A patient can therefore suffer from any other disease from the above mentioned instead of IC, or a patient can suffer from IC and none of the above, or a patient can suffer from IC and any or few of the above. A doctor has to take into cognizance a proper algorithm to ascertain IC. So even for a doctor confirming IC is not easy.