Interstitial Cystitis (IC)

It is possible that IC is hereditary. In the U.S., IC/BPS occurs in 1 in every 30,000 women, with men affected in only 10-20% of all cases. Risk factors for this condition include emotional, sexual, and physical abuse. The condition is associated with other disorders: depression, allergies, irritable bowel syndrome, fibromyalgia (widespread muscle pain and fatigue), Sjogren’s syndrome (dry eyes and mouth, arthritis), and vulvitis (tenderness of the external genital skin). IC/BPS does not appear to affect pregnancy or the health of the fetus. This condition is not a prelude to cancer.

This condition involves the bladder, pelvic muscles, and nerves that go to these sites. Pain and pressure in the bladder and pelvis are the dominant symptoms, rather than incontinence, which is more associated with another condition called “overactive bladder.” Urine cultures are negative, which distinguishes IC/BPS from yet another common condition, “chronic bacterial cystitis” (repeat episodes of urinary infections).

The exact cause of IC/BPS are unknown, but several theories are offered:

• The bladder lining becomes leaky and allows urine to seep into the bladder wall and cause damage.
• Mast cells are often seen in the bladder, suggesting a possible allergic reaction related to the release of histamine.
• The nerve endings to the bladder have become hypersensitive.
It is an autoimmune disease- i.e., the body’s immune system attacks the bladder. IC/BPS does not appear to be caused by bacterial urinary infections.

Your doctor will take a history of your symptoms, your diet, past medical and surgical history, and medications used. You may be asked to fill out a voiding diary and a pain questionnaire. You can help by bringing records of prior urine cultures, any imaging studies of the abdomen and pelvis, prior interventions using medications or procedures.

The doctor will want to do a pelvic and rectal exam, also a good neurological exam.
A urinalysis and urine culture is essential (usually negative with IC/BPS). A urine cytology (cancer screen) may be ordered.
Imaging of the abdomen and pelvis using ultrasound, CAT scan or MRI may be needed.

Urodynamics may be helpful. This test involves placing a small catheter in the bladder and then slowly filling the bladder with sterile water. Urodynamics help us to assess the bladder’s capacity and compliance, also your ability to relax the pelvic floor when voiding.

Cystoscopy (looking through the urethra into the bladder) is useful to check for ulcers (open areas in the bladder lining that can be seen with IC/BPS). A bladder biopsy may be needed to rule out early cancer.

Laparoscopy (looking through an endoscope into the abdomen) is less commonly used to identify pelvic conditions that might explain the symptoms (e.g., endometriosis or scar tissue from a prior surgery).

There is no one single test that can be used to diagnose IC/BPS. We call it a “diagnosis by exclusion” – meaning other, more easily recognizable problems are ruled out first, most commonly:

• Overactive bladder
• Chronic bacterial cystitis
• Bladder or other pelvic cancers
• Gynecologic disorders (e.g., vaginal atrophy, pelvic congestion syndrome, endometriosis, adhesions)
• Chronic prostatitis in men
• Pudendal nerve entrapment
• Symptoms from prior pelvic radiation
• Urinary stones
• Rare bladder diseases (e.g., eosinophilic cystitis, malakoplakia), and more.

IC/BPS can be frustrating because the cause is uncertain and there is no guaranteed cure. You may have to try different therapies, often in combination. We may not cure the condition, but hopefully, we can help to minimize the symptoms. We use a stepwise approach outlined by the American Urological Association. It starts with a more conservative approach and progresses to more aggressive interventions.

Step 1 – Lifestyle Changes

• Through an elimination diet –We can provide a list of food and drink to consider eliminating. Common irritants to the bladder include coffee, tea, soda, cranberry juice, citrus, chocolate, chilies, spicy foods, nuts, soy, and artificial sweeteners.
• Through stress reduction – to limit the emotional impact of this condition through exercise, prayer, meditation, yoga, hypnosis, music/art therapy.

Step 2 – Prescription Medication/Physical Therapy

• Oral prescription medications – Amitriptyline (reduces bladder spasms, also an antidepressant), Hydroxyzine and Cimetidine (anti-histamines), Pentosan polysulfate (Elmiron- restores the injured bladder lining)
• Intravesical medications (put into the bladder by a catheter) – Dimethylsulfoxide (DMSO), Heparin, Lidocaine, Triamcinolone – alone in in combinations
• Suppositories – Vaginal and rectal Valium
• Oral supplements – Quercetin, Calcium glycerophospahte (reduces acidity in food), Glucosamine/chondroitin
• Pelvic floor physical therapy – pelvic massage and manual efforts to lengthen contracted muscles or release scars, biofeedback.

Step 3 – Cystoscopy/ Hydrodistension/ Treating Ulcers in the Bladder

• Under anesthesia, the urologist examines the bladder with an endoscope. The bladder is allowed to distend with water to stretch it. This may provide pain relief. If there are ulcers in the bladder, the urologist can either inject them with numbing medicine or eliminate them using cautery or a laser.

Step 4 – Neuromodulation or Botox Injections in the Bladder

• Neuromodulation involves placing a soft electrode (wire) through the sacral opening near your tailbone that stimulates the nerves to the bladder. If successful, a pacemaker (similar to a cardiac pacemaker) is implanted that continuously provides an impulse to the electrode.
• Botox (Onobotulinum toxin A) can be injected into the lining of the bladder and will paralyze the bladder muscle, possibly reducing pain and urgency. It wears off in 6-10 months, so the procedure would need to be repeated.

Step 5- Cyclosporine

• Cyclosporine is an oral pill that has been used after organ transplantation that slows down your immune system. Some studies show a beneficial effect when used for IC/BPS. As a side effect, the drug may cause problems with kidney function.

Step 6 – Surgery

• Few people need surgery for IC/BPS, usually after failure of all earlier efforts listed above. We can remove nearly the entire bladder and rebuild a new bladder using bowel substitute. This is major surgery, and it does not always cure the condition.
• Alternatively, if urinary urgency and frequency are the main problems, we divert the urine away from the bladder by creating a ureteroileal conduit to the skin. This means that urine will flow from the kidney through a urostomy and into a bag worn just above the belt line.

Interstitial Cystitis Association (ichelp.org)
National Institute of Diabetes and Digestive and Kidney Disease (niddk.nih.gov)

Can IC/BPS be cured?
With no obvious cause and no single pill or procedure to treat it, IC/BPS can be challenging for both the patient and the doctor. Half the patients get better for a period of many months or longer. Others learn to manage their symptoms using the various therapies described. Some patients are unfortunately devastated by pain and often the associated anxiety/depression that accompanies a chronic condition. They may need a pain specialist and emotional support to help cope with their condition.