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Q. I suffer from interstitial cystitis. I have tried prescription drugs, acupuncture and a dietary supplement called CystoProtek. I heard that Botox might be helpful in relieving symptoms. What are your thoughts?
A. People with interstitial cystitis (IC) have to urinate frequently, sometimes as often as every 10 to 15 minutes. They may also experience pelvic pain, bedwetting and a feeling that they have to get to the bathroom in a hurry. Sexual intercourse can be extremely painful.
Although doctors don’t know what causes IC, it appears to be related to inflammation of the bladder. The diagnosis is difficult and IC may be confused with overactive bladder or other problems. There is no cure.
Doctors have tried many treatments, including inserting botulinum toxin (Botox) directly into the bladder (Current Urology Reports, Sept. 2008). Some patients benefit, but there is no guarantee of success.
A survey of 750 patients with IC found that certain approaches were more reliably associated with symptom relief than invasive treatments (Urology, Jan. 2008). These were, in order of effectiveness, the dietary supplement Prelief (calcium glycerophosphate), the OTC drug phenazopyridine and prescription Elmiron (pentosan polysulfate sodium).
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The amino acid L-Histidine, one 500 mg pill a day, helps IC. I don't know why.
IC sufferers, as opposed to ordinary UT bacterial infections, often already have rather acidic urine, which further inflames the already sensitive bladder cells and nerve endings. Increasing acidity with cranberry juice or extract won't help in that situation and may make things more uncomfortable.
While traveling and suffering from bladder pain, urgency, and frequency, I was advised by an Irish physician to drink a glass of water with a 1/4 teaspoon of baking soda (sodium bicarbonate) in it when symptoms flared, repeated 2-3 times per day. Later I read a book on IC (by a female urologist, but I can't remember her name) which also recommended avoiding acidifying beverages and instead alkalizing the urine a bit.
In the years since I learned about the bit of baking soda in water, I have taken some at the first sign of discomfort and it usually takes care of it.
I also dropped nearly all the sugar from my diet about 4 years ago, as well as avoiding grains (especially wheat) and other starchy foods. That has kept my blood glucose in a normal range, rather than too high after eating (impaired glucose tolerance). Perhaps not so coincidentally, the bladder troubles became a thing of the past, too. I haven't had a bladder flare-up in more than 4 years.
After reading the comment on this site I have started taking L-Histidine. I have been taking it for about a week and it gives me uncomfortable indigestion. I have even tried cutting the pill in half and taking half in the morning and half in the evening.
Thanks for those suggestions, I will try them. I was taking prosed, but my insurance doesn't cover it anymore, saying it harms the liver. It was something I could take without all the side effects of pyridium. Now I occasionally put elmiron directly into my bladder. Mostly women have this problem. I get bladder infections sometimes, which makes it the pain worse.
Jenni, what is elmiron?
Probably one of the few males with this condition, I've taken most of the prescription medications available. Elmiron is one of those that actually helps rebuild the inflamed and thinning bladder wall. It helped me in that regard, but the symptoms never totally leave. Typically prescribed are the anti-cholinergic medicines (oxy-butinin, amytriptaline, etc.) but they have been associated with memory loss of which I feel has affected me. I'm now beginning Sanctura XR which should handle symptoms without the brain effect. My symptoms now have moved to strong urgency and even leakage.
I agree with avoiding acidic foods and beverages (esp caffeine, cranberry juice) if you want relief from IC. I eliminated pain and urgency caused by IC by drinking 5 ounces of organic Aloe juice a day. (Don't drink any more Aloe juice than that; Aloe can cause diarrhea if used excessively.) Why does it work? I think it's because the Aloe juice passes through the bladder and soothes it just like it soothes a burn. Your nerve endings quiet down, pain is reduced, and urgency is gone. After going to urologists and trying many expensive Rx drugs without any relief, organic Aloe juice completely eliminated my symptoms in about a week. I haven't had a bladder flare up in years.