Up To 8 Million Women In The U.S. Have This Condition, But You've Probably Never Heard Of It

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In April, I saw a urologist about my frequent urination and bladder irritation, which I suspected could be an early sign of interstitial cystitis (IC), or chronic bladder inflammation. The doctor did a cystoscopy, where a tube goes up your urethra to look inside your bladder, and declared, "That's not an interstitial cystitis bladder." The diagnosis? An overactive bladder, likely due to "anxiety," he said. Apparently, even urologists are learning myths about interstitial cystitis (not to mention trivializing women's health concerns). Over the next few weeks, it began to feel like acid was being poured into wounds in my bladder, and I knew it was not just anxiety. I saw a urogynecologist (someone who specializes in women's urinary issues), who informed me that you can have IC and have a normal cystoscopy. Most likely, she said, I was in the early stage where the ulcers characteristic of the condition were too small for a test to pick up.

People with IC typically experience a frequent urge to urinate (despite little coming out), pain or irritation in the bladder lining, and/or pain elsewhere in the pelvic region, which can flare up after having sex or eating certain foods, according to the Mayo Clinic. It's unknown what causes it, but there are a few theories, Jennifer Linehan, M.D., urologist and associate professor of urology and urologic oncology at the John Wayne Cancer Institute at Providence Saint John’s Health Center, tells Bustle. It may result from deterioration of the bladder lining, irritating chemicals in the urine, or problems with the nerves of the bladder. The causes may be different for different patients.

Research has found that IC affects three to eight million women (three to six percent!) and one to four million men in the U.S. That's a massive number of people to suffer from something so poorly understood, but health conditions that primarily affect women are notoriously neglected and under-researched.

I panicked when my doctor first used the term "interstitial cystitis" because I'd heard how debilitating the pain and constant need to urinate can get. And it was for a while. I spent two solid months waking up 5-10 times a night to go to the bathroom, unable to get back to sleep because it still felt like I had to pee. I couldn't think, I was so exhausted. And almost everything I ate seemed to make my bladder burn.

But after spending several weeks following the interstitial cystitis diet, taking a few medications and supplements (Elmiron and Desert Harvest aloe vera pills to build up the bladder lining, Noctiva to reduce nighttime urination, and Venice Circle Pure CBD Hemp Oil to stay asleep), I'm able to live my life. I've reduced my wakeups to one or two per night, and I have some mild discomfort but not much pain. I would love to one day go half an hour without peeing or drink coffee or alcohol without that acid-in-a-wound feeling, but after going through a period where I really couldn't function, I've realized the important thing is that I can still work, have a relationship, and do everything else that really matters. There is life after an IC diagnosis.

Still, I wish I'd had more information — and less misinformation — from the getgo so that I could understand what was happening to me and how to heal myself. Here are a few common misconceptions about IC, along with what you should know about it instead, according to experts.

Misconception #1: If You Have IC, You Will Be In Pain Forever

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There isn't a cure for IC, but many people with it go into remission, or at least manage their symptoms and have normal lives. There are a number of medications and procedures used to treat it, as well as diet and lifestyle changes, OB/GYN Barry Jarnagin, MD tells Bustle. Because different cases present differently, there's often a bit of trial and error before the symptoms become manageable, says Linehan. So, don't give up just because your first (or second or third) attempt at treatment hasn't worked.

Misconception #2: What You Eat Doesn't Really Matter

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When my urogynecologist first told me to cut out caffeine and alcohol and pay attention to foods that make my bladder worse, I didn't take it seriously. I'm used to food being an optional, supplementary part of treatment for an illness. But the night I woke up with searing pain in my bladder after eating a green apple (a common IC trigger food), I knew I had to make some changes. It was only once I started following the interstitial cystitis diet that I saw real improvement. "Many self-report that diet changes were integral to their pain relief," Heather Florio, COO of Desert Harvest, tells Bustle.

Misconception #3: If Your Cystoscopy Is Normal, You Don't Have IC

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Some IC patients have red marks called glomerulations or patches called Hunner’s ulcers in their bladder lining. But others, like me, have bladders that look normal on a cystoscopy. "IC is now a clinical diagnosis, based on symptom complex, and cystoscope is not needed to make diagnosis," says Jarnagin. So if you have symptoms of IC but your doctor tells you there's nothing wrong because your cystoscopy looks normal, get a second opinion. Just because it's not visible on that particular test does not mean it's all in your head.

Misconception #4: IC Symptoms Always Point Toward A Bladder Infection

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People with IC are often misdiagnosed with bladder infections because the symptoms are similar. "Doing urine cultures are important in distinguishing the difference between IC symptoms and a true UTI," says Jarnagin. Make sure the doctor you go to has actually tested your urine before telling you that you have a UTI. This may seem obvious, but I was told I had a UTI twice and put on two rounds of antibiotics before my lab results came back, only to later learn they were negative.

Misconception #5: Doing Kegels Will Help

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Soon after my symptoms began, I went to a physical therapist, who taught me to do kegels when I felt like I had to pee so that the urge would subside. A psychotherapist told me to do the same. But not only do kegels not help with IC — they can actually aggravate it. "Kegels are definitely not always the best advice and can often cause more issues," says Florio. "Since tight pelvic muscles are often also associated with IC, using a tightening therapy like Kegels could contribute to the issue making IC worse."

Misconception #6: Cranberry Juice Will Help

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Cranberry juice has long been associated with urinary health, but whether it's actually healthy depends on what problem you're treating. "There is some evidence that cranberry can help prevent UTIs, but often juice is acidic and filled with sugar," says Linehan. "This can be very irritating to patients with IC." If you want the infection-fighting benefits of cranberries, Jarnagin recommends cranberry pills with a neutral pH.

Misconception #7: Only Women Get It

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More women than men are diagnosed with IC, but according to IC Help, the number of men with IC may be underestimated because they've been misdiagnosed with other conditions like chronic prostatitis or chronic pelvic pain syndrome. "IC can affect patients from all races, sex, and age," says Linehan. "There is no discrimination."

If you're experiencing symptoms of interstitial cystitis, talk to a urogynecologist or urologist about treatment options. And remember, as bad as things are right now, they will get better, so don't give up hope.