What Is Interstitial Cystitis?

What is interstitial cystitis?
Photo Illustration by Keila Gonzalez
Photo Illustration by Keila Gonzalez

This informational guide, part of POPSUGAR's Condition Center, lays out the realities of this health concern: what it is, what it can look like, and strategies that medical experts say are proven to help. You should always consult your doctor regarding matters pertaining to your health and before starting any course of medical treatment.

Interstitial cystitis, or bladder pain syndrome (IC/BPS), is a chronic bladder condition that affects millions of people around the world. In the US, about three to six percent of women and one to four percent of men have IC/BPS, according to the Interstitial Cystitis Foundation. Living with IC/BPS can be tough. Symptoms like constant bladder pressure, frequent urination, and urgency can disrupt your life and make it hard to get through the day.

But research has shown that 60 percent of IC/BPS cases are missed, while other times the condition is mistaken for similar conditions, such as overactive bladder, endometriosis, and vulvodynia. Learning the signs and symptoms can be helpful in staying informed and being able to flag it to your healthcare provider. Here, we've gathered some key info to help you learn more about IC/BPS.

Understanding Interstitial Cystitis

IC/BPS is a chronic bladder condition that causes persistent symptoms, including urinary frequency and bladder pain or pressure, for six weeks or longer without any identifiable cause, according to the Urology Care Foundation. "IC/BPS typically presents with persistent urinary urgency and/or frequency without any infection or other pathology present," says Heather Jeffcoat, DPT, doctor of physical therapy and author of "Sex Without Pain: A Self-Treatment Guide to the Sex Life You Deserve."

Dr. Jeffcoat lists pain (rectal pain, genital pain, abdominal cramps, postcoital pain, ejaculatory pain, perineal pain, pain during urination), nocturia (or consistent peeing in the middle of the night), the sensation of bladder spasms, pubic pressure, and painful sex as common symptoms of IC/BPS. It's also worth noting that typically, peeing does not relieve this pain or discomfort for very long, if at all, Dr. Jeffcoat says.

The Interstitial Cystitis Association (ICA) believes there are also subtypes of IC/BPS (non-ulcerative and ulcerative), which may explain why symptoms vary so much from person to person. Approximately 90 percent of people with IC/BPS have non-ulcerative IC/BPS, and five to 10 percent have ulcerative IC/BPS. Those with ulcerative IC/BPS may have Hunner's ulcers or patches of inflammation on the bladder lining.

IC/BPS symptoms can also be easily mistaken for other urinary conditions, leading to misdiagnosis and delayed treatment. And because there's no single test or marker for IC/BPS, it can be a challenging condition to diagnose without proper evaluation by a healthcare professional who specializes in IC/BPS.

Understanding and properly diagnosing IC/BPS is crucial for managing its symptoms and providing effective treatment. People who go undiagnosed or misdiagnosed for IC/BPS may suffer from unnecessary pain, discomfort, and decreased quality of life, research states.

Causes of Interstitial Cystitis

The exact cause of IC/BPS is still unknown. However, Jennifer Anger, MD, MPH, professor of urology and vice chair of research at the UC San Diego Department of Urology, says several theories may explain why a person develops IC/BPS. One theory is that the bladder lining is "leaky" or weak. As a result, different metabolites in the urine can cause pain when they contact the bladder wall. The second theory is that bladder pain occurs similarly to a migraine: it comes and goes often without explanation. Dr. Anger notes that many people with IC/BPS also experience chronic pain in other parts of their body and are more likely to have other chronic pain conditions such as fibromyalgia, irritable bowel syndrome, and chronic fatigue.

According to Dr. Jeffcoat, the typical IC/BPS patient has a history of recurrent UTIs, vulvodynia (vulvar pain), and/or suspected endometriosis. IC/BPS and endometriosis are often called "evil twins' syndrome" because they frequently coexist and can exacerbate each other's symptoms. "Sexual abuse has also been referred to as a part of a patient's history, but I do not see this clinically with many of my patients, as the concurrent medical conditions listed above are far more common," Dr. Jeffcoat says. "Chronic prostatitis is a comorbid condition associated with IC/BPS in males."

The National Kidney Foundation also lists allergies, autoimmune disorders, and defects in the lining of the bladder as potential contributing factors to IC/BPS.

Most Effective Treatment For Interstitial Cystitis

There is no cure for IC/BPS; however, there are ways to manage the symptoms and improve quality of life. "IC/BPS doesn't have to be a lifelong sentence to chronic pain," Dr. Jeffcoat says. "Some folks will need ongoing maintenance therapies and dietary changes; others more strongly affected by the musculoskeletal system can become symptom-free with pelvic floor physical therapy."

A holistic, total-body approach is best for treating IC/BPS and reducing pain and discomfort. "Depending on the severity of IC/BPS symptoms someone has, treatment options include modifying the diet to avoid triggering foods, avoiding stress and actively trying to reduce stress, taking supplements to neutralize bladder acid and calm the bladder, prescription medications by mouth or inserting medications directly into the bladder (bladder instillations), and stretching the bladder under anesthesia (hydrodistension)," says Karyn Eilber, MD, a board-certified female pelvic medicine and reconstructive surgery specialist at Cedars-Sinai Hospital in California.

With IC/BPS, there's no one-size-fits-all treatment plan. Every person with IC/BPS is unique, and it may take a bit of trial and error to find the best way to manage your symptoms and get back to living a happier and more comfortable life.