LIFE

I Thought I Had A UTI For Over A Year Before I Was Finally Diagnosed With Interstitial Cystitis

by Kat Manos
Kat Manos is an Associate Editor who loves arguing about indie rock, classic literature, and "Star Wars."

You might be asking yourself, have I ever had bladder pain? What exactly does it mean to have pain in the bladder? Is that simply the feeling of having to go pee really badly? Or is it the sensation of feeling like you have to go, but realize you are unable to do so?

Well, step right up, bladder friends! My name is Kat and I’m an expert when it comes to my own bladder, so let me help you with yours.

I have a disease called interstitial cystitis, or IC, also known as painful bladder syndrome. It’s not a well-known chronic illness, or one that has spawned an entire movement of trendy foods like celiac’s, i.e., gluten-free everything.

But IC is a disease that, according to the Interstitial Cystitis Association, may affect between 4 and 12 million Americans, most of whom are overwhelmingly female. The Centers for Disease Control and Prevention (CDC) believes those numbers to be even higher, with 12% of all American women showing symptoms and early signs of IC (that is 38 million people!). However, only a small number of them even know they have it.

Here’s everything you need to know about interstitial cystitis, and my experience living with IC after being diagnosed four years ago.

Thumbnail Credit: Kat Manos for LittleThings // Morgan Swofford for LittleThings

What Is Interstitial Cystitis?

What Is Interstitial Cystitis?
Morgan Swofford for LittleThings

Interstitial cystitis, as defined by the Mayo Clinic, is a chronic condition that causes pressure and pain in the bladder, sometimes spreading to the general pelvic area. While IC affects people differently, almost every patient experiences general inflammation in the bladder either internally, externally, or both.

One of the more surprising facts about IC is how little research and awareness the disease has even in the medical community. When I was officially diagnosed in March 2014, I learned that the first record of a patient with chronic bladder pain didn’t pop up in a medical textbook until 1836. Then, “interstitial cystitis” wasn’t even coined until a surgeon named Alex Skene wrote about it in 1887. Finally, 100 years passed before the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) in 1987 actually defined criteria for the condition so doctors could begin research.

Basically, knowledge of the disease goes back maybe a century at most, while legitimate research on it spans only a few decades. Imagine being 23 years old and being diagnosed with a condition that has a near-unpronounceable name with little to no medical research about it! Thankfully, I’m here to help.

What Are The Symptoms Of Interstitial Cystitis?

What Are The Symptoms Of Interstitial Cystitis?
Kat Manos for LittleThings

Symptoms of interstitial cystitis vary for different patients. Depending on the person, the pain, pressure and inflammation of the bladder can range from mild to severe discomfort. These are the most prevalent and noteworthy symptoms.

Common Symptoms: Chronic pelvic pain, having the constant urge to pee, peeing frequently, only being able to pee in small amounts, feeling dehydrated, abdominal pain, lower abdominal spasms, general abdominal pressure, pressure while peeing.

Severe Symptoms: All of the above, plus pain during sex, general fatigue, insomnia, depression, anxiety.

Rare Symptoms: All of the above, plus suicidal thoughts and greater propensity for other chronic illnesses like irritable bowel syndrome, fibromyalgia, endometriosis, and chronic fatigue syndrome.

One of the more complex aspects of IC symptoms is that they often look like other illnesses. The majority of women start showing early signs of IC and think they’re simply experiencing chronic urinary tract infections, or hormonal complications that can arise with a monthly period or taking birth control. Likewise, men with IC repeatedly experience difficulty peeing, so they and doctors assume  chronic prostatitis is the issue because it’s a more common prognosis. In fact, many men who ultimately have IC are ignored because interstitial cystitis has notoriously (and incorrectly) been regarded as a “women’s disease,” despite up to 4 million men experiencing symptoms.

I consider myself lucky for having experienced only the common symptoms, and one or two severe ones. I am someone who does have to pee in the middle of the night, every night, and at least 10 times a day. But in severe cases, some people have to pee up to 60 (!) times a day. Sitting for long periods of time, wearing tight pants, not drinking water, eating poorly, and missing a few hours of sleep are all I need to go from feeling pretty good to being incapacitated in bed for a day. But I have some tips below that can combat the complications that come with IC.

How Is Interstitial Cystitis Diagnosed?

How Is Interstitial Cystitis Diagnosed?
Kat Manos for LittleThings

Diagnosing interstitial cystitis is a complicated nightmare. No doctor knows exactly what causes IC, so experts are forced to rely on a patient’s experiences. In 2010, when I was only 20, I started realizing that I was feeling dehydrated and tired a lot, even when I was well-rested and had been drinking plenty of water. I had been studying abroad in London at the time and went to a local pub to catch up with friends one Saturday night. Living as the English do, I drank a few beers (18 years old is the legal drinking age there!) and almost immediately started feeling sick. I didn’t realize it at the time, but this was the beginning of more than three years of doctor visits, confusion, pain, and luckily, eventual diagnosis.

Doctors can only diagnose IC by eliminating every other possible cause of symptoms. Sometimes the symptoms of early IC, like the ones I experienced, can look like other things. In the three years before being diagnosed, doctors told me I “probably” had at least one or more of the following: diabetes, chronic urinary tract infections, a sexually transmitted infection, a rare kidney disease, ulcers, irritable bowel syndrome, anxiety, and “possibly cancer.”

The only thing worse than hearing, “This is probably fine, but it could be cancer,” is when more than one specialist said, “I think this is all in your head.” Being in a position where my pain wasn’t taken seriously, or dismissed as something I created through stress and anxiety, isn’t uncommon. Fortunately, after a series of pelvic exams, blood work, ultrasounds, and trips to expert OB-GYNs and urologists, I found one urologist who took my accounts of pain seriously and decided to perform a cystoscopy.

A cystoscopy involves the doctor inserting a tiny camera into the bladder via the urethra to examine the inside of the bladder. (You are awake and under no anesthetic, by the way!) For my case, it turns out the inside of my bladder is pristine. The outside of my bladder, however, is perpetually inflamed. This, along with all my symptoms and previous tests, confirmed IC. It took nearly four years to reach this diagnosis. The photo above is an ultrasound of my kidney, which my urologist checks at every appointment.

How Is Interstitial Cystitis Treated?

How Is Interstitial Cystitis Treated?
Kat Manos for LittleThings

Unfortunately, interstitial cystitis has no cure at this time. Because doctors don’t know the root of the problem with IC, they can’t pinpoint a solution. However, there are varying paths to treatment that can keep pain at bay temporarily, or in some cases, for several months.

Short-Term Doctor Treatments:

  1. Medication: Most doctors will prescribe IC patients medication for an overactive bladder. I had four different prescriptions before finally finding medication that helped me. In two cases, I had to change the particular pills I was taking because they no longer worked, despite having helped for over a year. Since being prescribed, I take this medicine every day — and for the few days when I accidentally forgot, my body definitely suffered because of it.
  2. Physical Therapy: Many doctors suggest IC patients go to physical therapy in order to improve the body’s pelvic floor muscles. I’ve never tried this type of therapy, though I do specific stretches and exercises when I’m in pain.
  3. Medical Distillations: To help patients with reoccurring issues, doctors will insert medicine directly into a patient’s bladder during a cystoscopy (there’s that procedure again!). I do this treatment once a year, and while it’s wildly uncomfortable, I tend to feel better after having it.

Long-Term Doctor Treatments:

  1. Surgery: Only in severe cases of IC do doctors perform surgery. This usually involves laser therapy, or completely removing the bladder. I haven’t been forced to have this treatment yet and hope I never will.
  2. Botox: Surprisingly, using Botox to treat IC has become more common and effective. Injecting Botox into the bladder tends to strengthen the surrounding pelvic muscles. I haven’t used this as treatment, though I would definitely consider it in the future.
  3. Neuromodulation: This space-age, technological treatment involves wearing a device that sends electronic pulses down the lower back to relax the pelvic muscles. Again, I haven’t experienced this treatment, though it appears to have successful results for some people with severe symptoms.

Some people have found comfort in self-help books like the one here!

Self-Care Treatments:

  1. Diet Change: Changing your diet is the single most important step any person with IC can take toward full treatment. Because IC involves an inflamed bladder, eliminating any and all foods and beverages that irritate it are vital. Everyone responds differently to different foods, so it’s important to find the foods that work for you. (See below for my specific tips on this.)
  2. Stretches/Exercises: Stretching abdominal muscles and bringing knees to the chest are easy movements to ease an IC patient in pain. These exercises are similar to those that ease menstrual cramping, and I do them regularly.
  3. Homeopathic Remedies: Everything from hypnosis and meditation, to acupuncture and medicinal marijuana have reportedly helped IC patients through pain. I haven’t had too much luck with herbal remedies, but am quite open to using acupuncture because the results sound amazing.

What I've Learned From Having Interstitial Cystitis

What I've Learned From Having Interstitial Cystitis
Kat Manos for LittleThings

Now that we’ve all caught up on the mysterious condition that is interstitial cystitis, I’d like to share more of my story. As I mentioned above, I was diagnosed with IC in March 2014 after first showing symptoms in March 2010.

My experience with IC began with real suffering, and while I still struggle with the condition today, I am much happier and healthier than I’ve been in the past.

These are the things I wish I’d known from the very beginning of showing signs of IC. I can only hope they help you or someone in your life who lives with interstitial cystitis.

1. Listen To Your Body

1. Listen To Your Body
Kat Manos for LittleThings

First and foremost, if you currently have or suspect you might have interstitial cystitis, it’s important to listen to your body. This might seem like a no-brainer, but I know firsthand that had I listened to my body more, I would’ve suffered a lot less.

Doctors were so convinced that the pain in my lower abdomen meant I had chronic urinary tract infections, but I knew that didn’t seem right. Instead, I dismissed my own feelings and trusted local clinics when they told me to take cranberry supplements. Many women know that a common at-home remedy for UTIs is drinking cranberry juice, so I drank nothing but that for days while taking the supplements. Except that it turns out, cranberry juice is one of the worst things someone with IC can put into their bladder. Seriously, don’t do it.

While the acidity of cranberry juice is supposed to change the pH balance in the bladder and help neutralize bacteria during a UTI, it does nothing but irritate and inflame a bladder affected by IC. I should have listened to my body and recognized that cranberry tablets and juice weren’t helping.

 

Practical Steps To Better Health:

1. Start a diary of your symptoms and track how you feel every day. It took me way too long to connect that I felt worse after eating breakfast every day because of the ketchup I put on my eggs. It took me even longer to realize that I felt so sick after eating pasta not because of the gluten in the noodles (I became convinced I had celiac’s disease at one point simply because I had heard of it and didn’t feel right after eating), but because of the marinara sauce on the pasta.

2. Track when, where, and how often you pee every day. Realizing how often I needed to go pee versus how often I was able to pee was a big indicator that something deeper was happening beyond what doctors were suggesting. Once I could clearly tell a specialist, I need to get up four times an hour to pee, he was able to eliminate possibilities.

3. Take note of what things make you feel better. I don’t remember at what point I figured it out, but I soon realized I felt less pressure in my abdomen when I drank water and ate ice cream. Sure enough, vanilla ice cream is considered not only a safe food for IC patients, but a soothing food for those experiencing pain, or flareups, as they’re called.

Ultimately, know that though medical professionals are there to help make you better, sometimes only you can know what’s best for your body. Don’t let people dismiss your feelings or pain.

2. Changing Your Diet Is Everything

2. Changing Your Diet Is Everything
Kat Manos for LittleThings

If there was one piece of advice I could give to anyone with interstitial cystitis, or even my younger self upon being diagnosed, it is this: change your diet. Immediately. And drink water. Never stop drinking water.

While I’m certainly aware of how much my medicine helps me every day, I know that nothing affects my health more than what I eat. After learning I had IC, my urologist handed me a small packet of information that included a five-page food guide of charts and graphs explaining the food I could and could not eat having IC. And boy, that list is a real doozy.

Foods I Can No Longer Eat And Miss Every Day: Caffeine, chocolate, alcohol, tomatoes, lemons, oranges, (most) apples, hot dogs, margaritas, chocolate cake, ketchup, marinara sauce, strawberries, cherries, chocolate chip cookies, most Indian food, pretty much all Thai food, raspberries, chocolate chip ice cream, guacamole (the limes, onions, and tomatoes in it are the worst!), PIZZA, a lot of Mexican food, soy sauce, teriyaki sauce, wine, peppermint mochas from Starbucks, pistachios, orange juice, any and all vinaigrette salad dressing, miso soup, pepperoni, kiwis, pineapples, papaya, nectarines, mandarin oranges, Earl Grey tea, bread with preservatives in it, chocolate donuts, pickles, my mom’s tacos, my mom’s homemade spaghetti, my grandmother’s Greek food, and McDonald’s.

Food I Can No Longer Eat And Don’t Miss Every Day: Cilantro, pecans, anchovies, tofu, raisins, chilies, horseradish, vinegar.

Foods I Can No Longer Eat That Are In Everything And Ruin My Life Every Day: Onions, onions, onions, onions, onions, onions, scallions, onions, onions, shallots, onions, onions, onion oil, onions, onions, leeks, onions, onions, onion powder, onions, onions, onions, and oh, onions.

Seriously though, onions are in everything and they’re trying to ruin my life. But there is hope.

Practical Steps To Better Health:

  1. Eliminate problem foods immediately. Don’t phase them out, just entirely cut them.
  2. Focus on the delicious foods you can still eat and don’t be afraid to get creative. (Even though I miss soy sauce with my sushi, sesame oil is a pretty good substitute!)
  3. Stop drinking anything other than water. Water is 100% the best thing you could feed your bladder, and it’s the only liquid that doesn’t upset my bladder in some way. Because so many IC patients can feel dehydrated by their medication and daily bladder discomfort, water is the best way to go. I drink 10 canteens of water a day, roughly 160 fluid ounces.

It’s going to be hard to eliminate the foods you love so much, and it’s definitely not going to be easy navigating a world where food is so delicious but eating it can destroy your insides. But I promise you from the bottom of my heart that once you let them go, your body will thank you.

3. Seriously, What You Eat Determines Your Health

3. Seriously, What You Eat Determines Your Health
Kat Manos for LittleThings

Did you think I was kidding about how important food is? I wasn’t. Making a food diary of the types of foods that cause pain (or make you feel better) is a necessary step toward good health. Again, while every IC patient is different, I think this is a really helpful and comprehensive chart to follow. When in doubt, remember that you’ll want to avoid anything acidic, spicy, smoked, pickled, caffeinated, or alcoholic.

While this chart can seem very overwhelming, look at the positives! While most fruit is out the window, almost every vegetable is still in play. Even with chocolate gone, vanilla desserts are still very much up for grabs. Avoiding preservatives might seem difficult, but you will be so much happier and healthier without them in your life. Once I started seriously changing my diet so I didn’t feel sick anymore, I lost about 15 to 20 pounds in a couple of months.

Practical Steps To Better Health:

  1. Make a food diary to track which foods hurt you and which appear safe. This is really important because your sensitivity to food will sometimes change. For example, in the very beginning of my sickness, I dropped coffee and replaced it with decaf. I was fine for several months until decaf made me feel weird as well, so I switched to strictly hot chocolate. But the very minuscule caffeine in the chocolate was eventually enough to hurt me, too. Keeping track is vital to overall health.
  2. Don’t be afraid to try “maybe” foods one at a time and slowly. Bananas are a “maybe” food for many IC patients, but definitely the fruit I eat most because it doesn’t kill me. I would’ve never known that had I not tried it.

Learning to cook at home has been a challenge for me because I don’t particularly enjoy cooking, but it is possible. Look at this incredible fish dinner, courtesy of my amazing roommate, which features only IC-safe ingredients.

4. Adequate Sleep And Exercise Are More Vital Than Ever

4. Adequate Sleep And Exercise Are More Vital Than Ever
Kat Manos for LittleThings

I know everyone already knows how important it is to get seven to eight hours of sleep a night. But when you have interstitial cystitis, a full night’s sleep is the difference between being functional and incapacitated. Ironically, people with IC often have bad sleeping habits because they have to get up and go so frequently during the night. But I’ve managed to create a system that works for me, so I hope it can work for you.

Because having interstitial cystitis can be so exhausting and draining on your body, sleep is vital to feeling good. The worst days I’ve ever felt having this condition have been when I didn’t drink enough water and only slept maybe two hours or so because of a long plane ride. You don’t want to see me on those days. The Crypt Creeper would be afraid.

Others have written nice sleeping tips for people with IC, or even shared their experience with sleepy face cream, but the best things that help me doze off are the following: exercising, going to sleep at the same time every night no matter what, liquid melatonin drops, and sleeping with pillows under my legs (this helps alleviate abdomen pain).

Exercising regularly, even if that just means stretching, jogging, or swimming, can help keep your body in check. Curling up in a ball is actually the most natural position for anyone with IC, so being able to work your core muscles is very helpful.

Practical Steps To Better Health:

  1. Set a regular sleeping schedule and stick to it. It will train your body (and bladder!) in the long run.
  2. Don’t be afraid to do some light exercise. Yoga and stretching regularly are easy enough to do in your home, and can really cut down on muscle cramping and pain.
  3. Try to pee at the last possible moment before going to bed, then train yourself to get up at the same time every day to avoid multiple trips. It takes work, but it’s worth it.

5. Not Everyone Will Understand Your Illness

5. Not Everyone Will Understand Your Illness
Kat Manos for LittleThings

It took me a really long time to figure out that not everyone will understand that I have interstitial cystitis. It’s dark to admit, but almost every day I wake up and hope that a celebrity or successful spokesperson will come out and admit they have IC just so that the average person on the street can know what it is.

In the beginning, it was so difficult to explain to my friends that no, I can’t have even a sip of your great cocktail, and no, I can’t just taste the fantastic spoonful of tomato soup you just made because I will get sick. I’m four years into my diagnosis, and still almost every single exchange I have with a waiter is a strained one. It might be annoying, but I always try to double-check and see how even the simplest dishes are cooked. I am always patient and explain that I have severe allergies and no, if the dish just has onion powder but not onions alone, I will still get sick. Finding healthy restaurants that are sensitive to allergies and allow you to amend dishes are 100% the best. Consequently, I tend to avoid restaurants that turn up their nose at substitutions or immediately follow up my question of “Are there scallions on that?” with “Oh, do you just not like the taste?”

I’ve even experienced situations where people like waiters or acquaintances will lie about what’s in the food they’re offering me. Yeah, people suck. In many cases, people don’t even know what’s in the dish they’ve made. For example, did you know that Southern restaurants will sometimes cook fried chicken in onion oil? And plain yellow cake can sometimes have citrus zest in it? Or how vanilla cookies can have a teaspoon of rum “just for flavor”? Don’t forget that alfredo and pesto sauce can contain onions, and almost all fish is prepared with lemons. Lastly, gala, fuji, and pink lady apples are okay, but golden/red delicious, macintosh, granny smith, and honeycrisp apples are not.

It’s been so difficult in the past for people to understand IC and what it means to have food allergies for a condition they’ve never heard of, so I’ve begun to say this: “I’m very allergic to [item] and will be very sick if I eat it. Is it possible to have it on the side, or take it out? If not, I can order something else.” Saying it calmly, kindly, and clearly is the best way to navigate ordering food with an IC body.

Practical Steps To Better Health:

  1. Remember to be kind, patient, and clear with waiters and people who prepare your food. They will never know your food sensitivities unless you voice them, so be sure your voice is heard.
  2. Find good restaurants willing to work with your allergies and preferences. I have a couple of go-to restaurants in my neighborhood that know my trigger foods, and they have no problem accommodating. Find more places like these!
  3. Know that your family and closest friends will certainly understand and support you, even if “going out for drinks” means you’ll be drinking water. My culinary-inclined friends even enjoy cooking for me as a challenge. Who can make a full dinner party menu with only foods Kat can eat? Go!

6. You Can Never Give Up Hope

6. You Can Never Give Up Hope
Kat Manos for LittleThings

Don’t give up. Simple as that. Having interstitial cystitis is not fun, and there are very few perks I can think of, but I am still grateful every day that I at least know how to improve my health. Because people can go untreated and undiagnosed for so long with IC, I am thankful that specialists were even able to figure out that I had IC in the first place.

Yeah, I can’t eat most fast food, I can’t drink, I haven’t eaten chocolate or tomatoes since Barack Obama’s first term in office, but I also take medication that makes me feel better. And I only pee maybe 12 times a day instead of 60 like some people. I can usually sit through a whole movie without having to leave. I can sometimes make it through a whole concert without having to step out during my favorite song. I have learned how to wake up and feel good inside and out, and how to say no to free samples at Costco.

Millions of people in the world have IC, so support groups are growing all the time, especially online. I consider myself lucky in knowing that while there isn’t a cure for this unbelievable disease I have, there are others who understand my pain.

If you are someone or know someone in your life who is affected by interstitial cystitis, painful bladder syndrome, or chronic bladder pain, please SHARE this article on Facebook so they may find help, too!