Interstitial cystitis or painful bladder syndrome are diagnoses that promise little help to patients in terms of treatment. Cystitis is roughly just a chronic inflammation of the bladder wall. What causes interstitial cystitis is unknown and doctors agree that women’s symptoms vary greatly. According to the Interstitial Cystitis Association, the problem occurs in both men and women and affects 4 to 12 million people in the United States. That’s 3 to 6% of the population.
The statistics indicate that women are more prone to being diagnosed with interstitial cystitis, but that may only be because men are more likely to receive a diagnosis of chronic prostatitis or chronic pelvic pain syndrome. Doctors don’t have much to offer patients who receive this diagnosis, but if you’ve been told that you have chronic cystitis don’t give up hope yet.
I received my first cystitis diagnosis years ago from a doctor who was irritated with me for showing up in his office without a urinary tract infection (UTI). I was very convinced that I had a UTI, but the tests showed otherwise. I wanted antibiotics, but he refused to give them to me. I went home with no relief from the irritation.
Several doctors later, I was at least able to find drugs to relieve the bladder discomfort. This doctor told me about Cystex and AZO. Both drugs worked reasonably well, but cystex didn’t last as long. AZO, on the other hand, turned my pee a very bright yellow. Cystex contained a mild antibiotic which was a plus, in my opinion since sometimes my bladder discomfort turned into a full fledged UTI. This doctor also prescribed a month’s supply of Macrobid (or Nitrofurantoin) to take after having sex as a prophylactic.
Around this time, I suddenly developed symptoms of fibromyalgia. Some nights, I could hardly pull the sheets up on my bed to cover myself. My joints had stiffened for what seemed to be no good reason. As a long-distance runner, this scared me enough to make me re-evaluate my lifestyle and what I was putting into my body.
I was in my twenties at this time and I was quite fit and high-energy most of the time. I lived on coffee. My exercise routine involved over an hour of exercise every day. My family and I had recently moved to a higher altitude in Colorado Springs. Sometimes, my sweat was so acidic, it would bleach my running clothes. I started to wonder if I was drinking too much coffee.
Coffee is a diuretic and it affects how much a person has to pee. It is also an acidic drink and since my body was already on the acidic side, I decided that it might be worth it to break my coffee addiction to see if this would help my joint pain and bladder problems. It wasn’t easy to quit drinking coffee. I went through periods when I would drink 3 pots of coffee in a day. It took at least a year and a half before I started feeling “normal” without coffee.
I continued drinking caffeine in teas for a long time, but eventually, I broke this habit too. My bladder infections and cystitis problems were significantly reduced. Even though I didn’t feel as wired during the day without caffeine, I didn’t feel the anxiety and irritation caused by cystitis or a UTI either and that was worth it to me. I didn’t always make good decisions when I was high on caffeine. Often, after a strong pot of coffee, I’d decide to take on unrealistic projects or attempt to do things within unrealistic time frames. Ridding myself of my caffeine addiction helped me be more realistic and definitely calmer throughout the day.
Every now and then I would still have inexplicable bladder irritation, but recently, my family and I cut gluten and dairy out of our diets. Now that I don’t have chronic intestinal problems going on, I’ve noticed that gas and bloating can cause bladder irritation for me. Though I was never diagnosed with Irritable Bowel Syndrome, my husband was and he occasionally complains of bladder irritation as well (doctors always claim that men don’t get UTI’s, which was frustrating to him). My theory is that the extra pressure in the intestines pushes on the bladder, causing irritation in some cases. Or, there is just an inflammatory response happening in the entire body due to some food or environmental irritant. The Interstitial Cystitis Association notes a number of diseases and syndromes that are correlated with the presence of cystitis. These include:
-Allergies and sensitivities
-Chronic Fatigue Syndrome
-Irritable Bowel Syndrome
-Pelvic Floor Dysfunction
Personally, I’ve noticed that when I have cystitis, I also tend to have a lot of anxiety. I’ve wondered whether anxiety and stress play a role in the development of cystitis. When my bladder is irritated, I also tend to have insomnia which makes me tired during the day. I’ve even noticed that bladder irritation causes me to have a sleep apnea. Sometimes (I know it sounds weird, but it’s true) I hold my breath when I have to pee.
If your doctor has diagnosed you with interstitial cystitis, don’t take this proclamation as a conclusive label and just succumb to it. Consider your lifestyle and eating habits. Alcohol and coffee are both diuretics, for example. Both of these drinks can affect the content of your urine and theoretically cause irritation in the bladder. If your doctor has diagnosed you with fibromyalgia, Irritable Bowel Syndrome, Chronic Fatigue Syndrome, or any other “disease” that has no known cause and no known cure, that’s your cue to look into alternative medicine and lifestyle and dietary changes. There is a cause for these problems and there are cures; your doctor just isn’t peddling any pharmaceuticals or surgeries to “cure” these problems. Perhaps the pharmaceutical companies make more money off of sick patients and doctors prescribing phenazopyridine (the prescription strength version of AZO) than they would curing the disease. Alternative medical treatments and home remedies are available to keep your cystitis in check.