Finding Hope Through The Pain: Life Beyond Interstitial Cystitis

Pictured above:  August Nyson

Pictured above: August Nyson

September is Interstitial Cystitis Awareness Month, and if you’re anything like me when I was first diagnosed with I.C., you might be thinking, “What? What the heck is that? Never heard of it.” 

Interstitial cystitis is an incurable chronic immune disease, also sometimes referred to as “painful bladder disease.” Although you may have never heard the name, I.C. is actually pretty common. According to the Centers for Disease Control, 1-5.1 out of every 100,000 people is diagnosed with I.C. It can affect both men and women but is more commonly found in women. Studies suggest that 12% of women experience early I.C. symptoms. But here’s the kicker. Most women are not officially diagnosed with I.C. until their 40s, even if they have experienced a lifetime of symptoms. Here’s why.

The symptoms of interstitial cystitis are EXACTLY like urinary tract infection (UTI) symptoms – like, freakishly similar, from the urgency and frequency to urinate to the pain and burning sensations. What makes I.C. even more difficult to diagnose is that it can’t be detected as easily as other diseases. Some patients experience years of misdiagnoses before receiving an answer and a name for their pain.

Back when I began experiencing what I now know as my I.C. pains (sometimes also called “flare-ups”), I immediately thought it was a UTI, so I did what I normally do – I got an appointment with my OB/GYN. She put me on antibiotics and did a urine test and sent me on my way. But the pain never went away. Every week for six weeks, I was back in the hospital, after having tried 10 different antibiotics, steroids, and creams, blood tests, urine tests, physicals, and even a painful vaginal ultrasound. And they all came back negative. At this point, I just wanted to know what I had. My pain was so severe that every 15 minutes I would run to the bathroom and then sit on the toilet crying because there was nothing there, and it burned like hell. 

That’s why this disease is so hard to pinpoint. It can only be diagnosed through a process of elimination. It doesn’t show up in urine tests or blood tests or even on an ultrasound. 

What I.C. Is and What (May) Work to Manage It

Now I should probably explain, more precisely, what I.C. is.Interstitial cystitis is when your bladder walls become inflamed or irritated, causing scarring and stiffening of the bladder. And, as my doctor put it, most I.C. patients have lesions on their bladder wall, causing severe pain. Think of it like this: What happens when you put something acidic (like lemon juice) on an open wound? It freaking hurts, right? So imagine if that is occurring inside your body. And what’s the acidity that stings so bad? Urine – one of nature’s natural acids. 

Although there is no cure for I.C. (yet)—although I’m hopeful— there are ways to alleviate the pain. Most commonly is the I.C. diet, also known as the low acid diet (and what I personally call the most boring diet in the world). I did low acid for a few months and was miserable. I had to cut out coffee, tomatoes, peppers, all fruit, all citrus, all processed foods, most spices, and most desserts. I basically lived off potato soup and bread. There are also supplements you can take (marshmallow root) and over-the-counter acid-reducers like Prelief and Javacid. You can also opt-in for bladder instillations with your doctor, which typically relieve symptoms for 8 to 24 hours. 

This disease is a journey. Figuring out what works well with your body is a long process. It’s a lot of trial and error. My doctor recommended I keep a journal of what foods caused my flare-ups. For me, spicy cauliflower curry created immediate pain, whereas strawberry jam, alcohol, and coffee caused day-long pain.

For some people like me, completely transitioning to a vegan diet has helped alleviate the symptoms. Everybody is different, of course, and when going through a diagnosis that is, one, incurable and, two, potentially lifelong, it’s a bit daunting. Taking the time to research, ask questions, join forums, and experiment with food will pay off in the end. 

All of this is to say that if you have experienced UTI symptoms that are persistent, even with prescribed antibiotics, and you have access to healthcare, please keep pestering your doctor until you are pain-free or have answers. Ask them about I.C. and what can be done to make sure you aren’t being misdiagnosed.  Together, we can help spread awareness and hopefully one day beat this disease!

By: August Nyson

Be a Rose