Living With Interstitial Cystitis! Here’s What You Should Do

Randie Noell has visited McDonald’s restaurants all over the world. Not for the McFlurries or a comforting taste of home while traveling, but for the bathrooms. Her most recent European adventure, for example, included a pit stop marked by Roman golden arches. “McDonald’s always has a restroom that is always available,” says Noell, a 63-year-old retired elementary school teacher in Yorba Linda, California.

Noell ought to know. As someone with interstitial cystitis, aka painful bladder syndrome, the urge to urinate can be an uncomfortable, frequent experience. “You keep having to run to the restroom, you try to urinate, the feeling goes away temporarily, but then you’re right back to feelings of pain,” explains Noell, who was diagnosed with a moderate case of IC about 20 years ago.

More than a hassle, IC, which has no known cause, can dominate patients’ lives, affecting everything from their sleep schedules to their career choices to their sex lives, says Nicole Cozean, a pelvic floor physical therapist in Laguna Hills, California, and author of “The Interstitial Cystitis Solution.” While the severity of Noell’s symptoms fluctuate – often triggered by stress or eating or drinking something irritating – some women she’s met are so constantly debilitated by IC that they’re on opioids and in tears. By the time many patients get to Cozean, “they’re hopeless and in pain,” she says. “Their life is extremely disrupted.”

Before Noell retired, for example, she had to either ask a teaching partner to watch the students while she ducked out to the bathroom or distract herself from the discomfort of feeling she needed to go. Today, many of her day-to-day decisions revolve around what gives her the most relief. “At some point,” she tells other people with IC, “you will find ways to make yourself more comfortable and you will be able to live your life without worrying where the bathroom is every five minutes.”

Misdiagnosis Madness

Interstitial cystitis is a chronic illness that may affect anywhere from 4 to 12 million people in the U.S., most of them women, according to the Interstitial Cystitis Association. Estimates vary widely in part because the nondescript symptoms of IC – namely, pelvic-area pain – are also symptoms of many other conditions, says Dr. Daniel Elliot, a urologic surgeon at the Mayo Clinic in Rochester, Minnesota.

“Essentially, all the symptoms can be associated [with] or caused by another disease process,” he says. “You can have pain with urination that can be due to a bladder infection, it could be due to bladder stones, it could be due to bladder tumors – and it also can be interstitial cystitis.” Symptoms can also be caused by a history of pelvic trauma, sexual abuse or pelvic mesh use; a urinary tract infection; or simply “run-of-the-mill overactive bladder,” Elliot says.

Accurate diagnoses require clinicians to rule out other possibilities first, according to American Urological Association guidelines. But many urologists, gynecologists and generalists aren’t aware of, or otherwise don’t follow, such guidelines, experts say. In turn, many people who don’t have IC hear they do, receive treatments that don’t work and then become disillusioned with the medical system for taking their time and money without providing them relief, Elliot says. At the same time, plenty of people who do have IC are told they have another condition and are also given treatments that don’t work. ” [Patients] are getting told they’re crazy, that symptoms are in their head, ‘there’s nothing wrong with you’ and given rounds of antibiotics for something that’s not an infection,” says Cozean, who treats Noell and serves on the board of the Interstitial Cystitis Association.

But a correct diagnosis is critical because, left untreated or improperly treated, IC can get worse, since the bladder seems to contract more and more in response to what’s believed to be underlying nerve irritation. “If the disease process continues, the bladder can shrink down to a nonfunctional bladder so that [patients] are urinating literally every 15 minutes,” Elliot says. “It becomes a horrible process.”

It doesn’t have to be that way. While IC has no cure yet, proper treatments can help patients cope with symptoms. The catch? What works for one patient doesn’t always work for another. “Any time in medicine there are multiple different treatments, it’s probably because we just don’t really know what’s causing it,” Elliot says. “And that’s definitely true with IC.” Here’s how he and other experts suggest finding out what works for you:

1. See a specialist.

In order to ensure appropriate treatment, you first need to make sure you have an accurate diagnosis by a urologist or gynecologist who has experience working with IC patients, is up to date on the AUA’s guidelines and enjoys working with IC patients, Elliot says. Many such clinicians are certified in female pelvic medicine and reconstructive surgery. “If you go into someone who specializes in prostate cancer or uterine cancer, and that’s what they like doing, you’re not going to get the same level of enthusiasm,” Elliot says.

2. Know your options.

Treatment options for IC range from first-line therapies like stress-management techniques to rare, last-resort procedures like bladder augmentation or removal, says Dr. Lindsey Cox, an assistant professor of urology at the Medical University of South Carolina. Other treatments include pelvic floor physical therapy; drugs like pain relievers, antihistamines or other medications taken orally or inserted into the bladder; and complementary therapies like acupuncture. Since many patients with IC also have other diagnoses like irritable bowel syndrome, allergies, depression and anxiety, seeking help for those conditions can help ease IC symptoms, too.

To find the optimal treatment or mix of treatments, begin with the least invasive options before trying more drastic measures, the AUA guidelines recommend. For Noell, who has gone through yearlong periods without IC flare-ups, it has taken a combination of medications, abstaining from alcohol and acidic and spicy foods, daily walks and working with Cozean to learn exercises that relax her pelvic floor muscles. “You have to do what works best for you,” she says. “It can be as simple as sitting down with a cup of chamomile tea and a heating pad.”

3. Seek support.

One of the most difficult aspects of living with IC is that people who have it don’t look sick. “It’s a debilitating and isolating condition,” says Jane, a 40-something stay-at-home mom in Florida, who asked to remain anonymous to preserve her identity as the anonymous author behind the social media handle, The Angry Bladder. For her, the internet has served as “a wonderful outlet” and source of support. “The most important thing for [people with IC] to know,” she says, “is that they’re not alone.”