What I Wish I'd Known About Interstitial Cystitis

As a writer who covers women's health, I've spent the past three years reading about all sorts of health issues common among women, from endometriosis to PCOS to vulvodynia. Yet somehow, I hadn't heard of interstitial cystitis (IC) — chronic bladder inflammation — until I began experiencing symptoms of it. IC affects an estimated three to eight million women and one to four million men in the U.S., but it remains poorly understood not only by the public but even by doctors.

Different cases of IC can present very differently, but the most common symptoms are frequent urination, bladder pain, pain elsewhere in the pelvis, and painful sex, according to the Mayo Clinic. There are a number of different treatments for IC, including medications, bladder instillations (a procedure that fills the bladder with medications), physical therapy, acupuncture, and surgery.

"IC can be a serious lifelong disease that severely affects patients and is sometimes described as 24-hour-a-day bladder pain," 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. "There are many theories as what causes the disease. My one caveat to patients is that there are other diseases from infections to hypersensitivities of the bladder that can mimic IC. So the diagnosis is often one of exclusion of other things."

Here's what I wish I'd known about IC before I experienced it myself — and what you should know if you're newly diagnosed or think you might have it.

1It May Not Show Up On Tests

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I spotted my IC symptoms in the very early stage. The first thing I noticed was that I was waking up at night a lot to pee, but almost no pee would come out. Doctors told me it was likely just an overactive bladder and/or anxiety. What was odd, though, was that I only felt this urge in a small spot on the lower left side of my bladder. This area didn't hurt, per say, but began to feel a bit irritated — as if the lining were a little raw (which is what IC may do; it's theorized to cause deterioration of your bladder lining, says Linehan).

Concerned about this symptom, I got a cystoscopy, where a doctor puts a catheter up your urethra and looks inside your bladder. He didn't find anything and went with the "overactive bladder due to anxiety" explanation.

I (and, apparently, this doctor) wasn't informed that cystoscopy results are not a definitive assessment of whether you have IC. "IC is now a clinical diagnosis, based on symptom complex, and cystoscope is not needed to make diagnosis," OB/GYN Barry Jarnagin, MD tells Bustle. Just because you have a normal cystoscopy doesn't mean you don't have IC.

2It Mimics A UTI

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About a week after my cystoscopy, I was staying with my boyfriend in Germany when I woke up crying. "It feels like my bladder is full of acid," I told him. "Something isn't right." That's when I knew this was not just an overactive bladder, and it definitely wasn't just anxiety. Unfortunately, these misdiagnoses were replaced with another one: a UTI.

My boyfriend took me to the ER the next day, where the doctor said it sounded like I had a bladder infection and put me on antibiotics. But it only got worse, so I went to a urologist, who put me on stronger antibiotics. A week later, when I was in Barcelona, the acidic feeling intensified, and I ended up in another ER. This time, they actually tested my urine so they knew there was no infection. I then emailed the urologist from Germany, who admitted that after my lab results came back, he hadn't found an infection either!

This is a really common experience. Many IC patients get misdiagnosed with UTIs, according to IC Help, since the symptoms (frequent urination, bladder pain) are so similar. Knowing this could have saved me several weeks spent taking antibiotics and drinking cranberry juice (which can make your bladder worse) instead of getting actual treatment.

3You Need To Research Any Procedures Or Medications Recommended To You

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Since IC bladders are so sensitive, things intended to make them better can sometimes make them worse. My doctor believes that's why the majority of my symptoms started after my cystoscopy — putting something up there can irritate it! Now that I'm in a Facebook group for people with IC, I've learned that many flare up after cystoscopies. I wish I hadn't gotten the procedure because it wasn't even necessary for a diagnosis (see #1).

I'm not saying nobody should get a cystoscopy, bladder instillations, or other invasive procedures, but the potential benefits have to be weighed against the potential for flareups. Even if a doctor recommends something to you, you still need to research it and get a second opinion if you can, especially for a condition like IC that's poorly understood.

4What You Eat/Drink Can Make A Big Difference

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When I first began experiencing my IC symptoms, I felt helpless. I'd heard that cutting out acidic things like caffeine and alcohol could help, but I didn't think it would make a big difference. Then, I spoke to a friend with IC, who emphasized to me that the first line of defense is modifying what you eat. I began following the interstitial cystitis diet and my symptoms drastically improved. After just a few days on it, I had frequent urination but almost no pain.

"Many self-report that diet changes were integral to their pain relief," Heather Florio, COO of Desert Harvest, tells Bustle. When I was feeling powerless, it would have been helpful to know that a few small changes from the comfort of my kitchen could really help me.

5There Are Doctors Who Specialize In Women's Urinary Issues

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Urology is kind of a weird field, combining the urinary tract and the male reproductive organs. This means that if you're a woman going to a regular urologist, you may be at a disadvantage because your doctor may be dealing primarily with men. The male urologist I initially went to couldn't understand what was happening.

Then, I went to a urogynecologist — a doctor who specializes in women's urinary issues. She was immediately able to explain to me what was going on and prescribe an appropriate treatment. I'm not saying all regular urologists are ignorant about women's bodies or that all urogynecologists will get things right or that all people with IC are women. But if you're a woman with bladder problems, your best bet is probably to see a doctor who specializes in treating women with bladder problems.

6There Are Online Communities To Support You — But Don't Get Sucked Into Them

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I've learned a lot by joining Facebook groups for people with IC. I've been able to pose lots of questions about how to heal myself and get valuable advice. These groups have also connected me with useful information online and helped me feel less alone.

But they're a double-edged sword. Hearing about how bad other people's IC is gets depressing and makes me wonder if mine will get that bad. So, I've made a rule for myself to only check the comments on my own posts, rather than go scrolling through the page. There are lots of resources available to you online and in person (many cities have support groups), but make sure the way you're using them produces a net gain for you.

7"No Cure" Doesn't Mean Your Health Will Never Improve

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When you google "interstitial cystitis," the Google sidebar declares that there's "no cure." This terrified me. Was I going to be in pain and unable to sleep forever? I asked my doctor about it, and she pointed out that lots of conditions have no cure, like asthma and irritable bowel syndrome. But people live normal lives with these conditions every day.

"IC is a chronic disease, and like any other chronic disease, can be successfully managed so that patients can be mostly asymptomatic," says Jarnagin.

8Things May Get Worse Before They Get Better, But They Will Get Better

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Having IC can leave you really hopeless. For a while, it felt like my whole life was on hold. I couldn't get anywhere near a reasonable amount of sleep because my bladder woke me up five or more times a night, I couldn't go out to eat because nearly every food seemed to hurt it, and my sex life was greatly limited because any touch in that area was uncomfortable. The worst thing, though, was not knowing when — or if — it would get better. Just when things started to get better, they'd get worse again.

There have been lots of ups and downs, but if I compare today to that night I woke up crying in Germany, I know my overall trajectory has been uphill. After changing my diet and getting on medication, my discomfort is mild, I'm only getting up once or twice a night to pee (with the help of some strong CBD oil), and I can have sex comfortably as long as there's not too much pressure on my bladder.

Everyone's journey is different, but IC symptoms are likely to improve with treatment. It may take a lot of trail and error, but once you get a semblance of your old life back, you just might develop a newfound appreciation for it.