Dear Doctor: What can be done about interstitial cystitis, or bladder pain syndrome? I'm told there's no cause or cure, and that some doctors don't even believe it exists.
Dear Reader: Interstitial cystitis is a chronic condition of the bladder that's five times more common in women than men. Patients with interstitial cystitis have pain, pressure or bladder spasms, with symptoms worsening when the bladder is full and improving after voiding. The condition also causes an increase in urinary frequency and urgency. Because people with these symptoms need to use the bathroom frequently, the condition is extremely disruptive to their lives. Further, these symptoms disrupt sleep in 70 percent of patients, creating feelings of fatigue.
Now let's look at the cause: a disruption in the cellular lining of the bladder. This disruption allows urinary irritants, or chemicals, to penetrate through the lining of the bladder, affecting both the nerves and muscle of the bladder. The nerve irritation can send feedback to the central nerves of the spine. The spinal cord sends signals to the bladder and pelvis relaying pain information, perpetuating the pain in a back-and-forth cycle.
Doctors don't have a clear understanding of the inciting event that causes this inflammation. Interstitial cystitis may originate from a bladder infection, or from bladder irritants, such as caffeine, alcohol, spicy foods and citrus.
I've seen enough patients with this syndrome to know that interstitial cystitis, or as some call it, chronic bladder pain, is very much real. That said, other causes for the symptoms must be ruled out, requiring urine tests to check for infection or even directly visualizing the bladder with cystoscopy.
The first treatment step is to eliminate behaviors and foods/drinks that irritate the bladder, meaning stopping all consumption of caffeine, alcohol and tobacco. You can also consider the restriction of spicy foods and citrus. The second step would be to consider behavioral modification to decrease the frequency of urination. One study, published in the Journal of Urology, showed that diet and behavioral changes decreased symptoms in 45 percent of patients.
Physical therapy with a therapist who specializes in interstitial cystitis can relieve some of the pain in the pelvic region by working on tender areas and increasing muscle stability in the lower abdomen. A 2012 study published in the Journal of Urology showed a 59 percent decrease in symptoms compared to 26 percent who did general therapeutic massage.
Amitriptyline, a tricyclic antidepressant with multiple uses beyond depression, has potential as well. In a 2010 Journal of Urology study, the drug -- given at 50 milligrams -- was shown to decrease symptoms in 55 percent of patients with interstitial cystitis. The problem is that many patients cannot tolerate the side effects of this dose, so I would consider doses of 10 milligrams to 20 milligrams.
Pentosan polysulfate sodium, which seems to protect the lining of the bladder, may help as well, and the sedating antihistamine hydroxyzine can aid patients who have symptoms of pain and frequency of urination during the night.
While interstitial cystitis is not a well-understood disease, it is certainly a diagnosable condition.
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