Watch as I educate this average Joe on a disease seemingly designed by Stephen King. We’ll laugh! We’ll cry! We’ll mostly cry!
I can’t freaking pronounce your illness. What is interstat—interstishy—what is interstitial cystitis?
Interstitial cystitis (IC) is a painful condition also referred to as bladder pain syndrome (BPS). Although it’s a relatively small organ, the bladder can cause intense and disruptive pain throughout a person’s entire body, which is often called “referred pain.” Many IC sufferers experience referred pain in the back, in the kidneys, and down their legs. The majority of pain in interstitial cystitis patients typically centralizes itself in the lower abdominal, vaginal, or urethral areas. There are actually pinpoint spots of bleeding visible in the bladder lining in 90% of IC cases. Despite extensive research and clinical studies, no possibility has been found of curing this disease.
Wait, for some reason I thought having interstitial cystitis meant you just pee a little more often than other people. Wrong?
Ahahaha! If everyone with interstitial cystitis only had to pee a tad more often than most people a lot of us would be screaming “huzzah!” and skipping around a maypole.
Okay, so then what are the symptoms of interstitial cystitis? This IC thing sounds like it really blows and I want to make sure I don’t catch it.
First of all, you can’t “catch” interstitial cystitis from someone else. And second, interstitial cystitis symptoms can vary widely between individuals. For some people with IC the symptoms are mild and more of an annoyance, but those with severe interstitial cystitis experience symptoms so intense that they’re forced to go on disability. Interstitial cystitis symptoms can include irritation and inflammation of the genital area, severe abdominal and back pain, urgency often accompanied by pain or spasms, frequent urination, and sleep difficulties. IC patients can experience severe pelvic pain and the need to urinate as often as every 10 to 15 minutes during both the day and night. One survey found that 27% of IC patients were unable to have sex due to pain, 50% of patients will experience pain while riding in a car or with any prolonged sitting function, and 63% were unable to work full time.
So I’m guessing people with interstitial cystitis aren’t often described as Pollyannas?
The emotional toll of IC can be pretty severe. The pain, frequent bathroom trips, and lack of sleep can interfere with work, families, and sexual enjoyment. Depression and anxiety are common. One survey found that 27% of IC patients had a marriage breakdown and 55% had contemplated suicide. Perhaps the most jarring statistic of IC is that interstitial cystitis patients are 3-4 times more likely to commit suicide than those who do not have the illness. And epidemiological studies indicate that IC patients score worse on quality of life measures than dialysis patients with end stage renal disease (US Interstitial Cystitis Association).
Ugh. That’s depressing. I’m gonna have to look at, like, fifty pictures of kittens in teacups to feel upbeat now. So what causes interstitial cystitis?
“How did this happen?” a newly diagnosed and dumbfounded IC patient might ask their doctor, only to be met with a shrug and an awkward “Think of it as winning a random lottery. Only instead of winning millions of dollars you just cry a lot and start going to church more.” The specific cause of interstitial cystitis is still unknown (but how great would it be if your doctor could just say, “Lay off the Red Bull, kid, and you’ll be waiting in Disneyland lines like a pro by next week!”). However, there are a number of factors that can correlate to the development of IC. These include:
- Bladder trauma (example: post-pelvic surgery)
- Bladder overdistention (some cases suggest a link between long periods without access to bathroom facilities and the later onset of IC)
- Pelvic floor muscle dysfunction
- Autoimmune disorder
- Mast cell abnormalities: In some people with IC, mast cells (special white blood cells associated with inflammation) are found in the bladder lining. Mast cells release histamine and other chemicals that cause inflammation of the bladder.
- Bacterial infection (cystitis)
- Spinal cord trauma
- Primary neurogenic inflammation (hypersensitivity or inflammation of pelvic nerves)
An unexplained association of IC has been found to exist with other autoimmune diseases such as systemic lupus erythematosus, Sjögren’s syndrome, fibromyalgia, chronic fatigue syndrome, inflammatory bowel disease, and scleroderma. Women are diagnosed with IC more often than men.
That last part sounded sciency and complicated so I kinda tuned out. Anywho, what kind of interstitial cystitis treatment options are available?
Treatment is highly individual and no medication or treatment exists that is effective in all IC patients. Treatment options, all with their own pros and cons, include medication (such as antihistamines, antiinflammatories, and sodium pentosan polysulfate ), hydrodistention with cystoscopy (stretching of bladder), surgery, biofeedback, transcutaneous electrical nerve stimulation, and sacral nerve stimulation.
And is there an interstitial cystitis diet people follow?
Yes. Some people with IC have “trigger foods” that can exacerbate symptoms, so doctors have a general list of foods they suggest people with interstitial cystitis minimize or avoid. Shortly after my initial diagnosis my doctor handed me a multi-page list of banished edibles and watched as I read some of the bad foods aloud. “Cranberries, grapes, tomato, melon, pickles, strawberries, guava, pineapple, citrus—Jesus! Is the goal to replace my interstitial cystitis with scurvy?!” Other things an IC doctor might smack out of your hand: ice cream, chocolate, tofu, alcohol, chips, juice, artificial sweeteners, hot dogs, and what seem like a billion different spices and condiments that range from miso to vinegar. Did I mention alcohol?
So just how many strawberry-shunning alcohol-craving achy-bladdered people are in our midst? In other words, how many people have interstitial cystitis?
The RAND IC Epidemiology Study (RICE) found that in the United States approximately 3 to 8 million women and 1 to 4 million men have interstitial cystitis.
It’s kinda weird that you’re willing to put your face on an admittedly unsexy disease. Although I guess it could be worse. You could be that reoccurring yeast infection chick in the Monistat commercials. Why does she keep getting so many freaking yeast infections? Is she not using the product in her freaking hand?! Anywho, it sounds like unless someone like beloved American sweetheart Reese Witherspoon develops interstitial cystitis there ain’t gonna be a major fundraising campaign to cure it any time soon.
Illnesses that are an impending threat to a patient’s mortality (cancer, stroke, etc.) get a lot of funding and a lot of coverage, and rightfully so. But sometimes it’s frustrating to know that illnesses that deeply affect a person’s quality of life, and in many cases even diminish their will to live, aren’t getting the research and funding they deserve. My hope for this website is that it will make a small contribution to IC awareness.
Where can I get more info on interstitial cystitis?
The Interstitial Cystitis Association (http://www.ichelp.org/) and The Interstitial Cystitis Network (http://www.ic-network.com/) are great resources if you’ve been newly diagnosed or want to find out the best way to support a friend or family member with IC.
Well, thanks for educating me/showing me graphic pictures while I ate my sandwich. Still, you’re only the third weirdest person I met on this L.A. bus today.
*If you have interstitial cystitis or know someone that does I’d love to hear your story. Please feel free to share in the comment section below!