Health Topics

What is interstitial cystitis?

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February 7, 2024

Learn about this chronic bladder condition that can cause pelvic pain and urinary urgency and frequency

If you’ve had unexplained bladder symptoms that don’t seem to go away, you may have a condition called interstitial cystitis/bladder pain syndrome. For those affected, the condition can be painful and frustrating, and can certainly affect quality of life. But doctors want patients to know that help is available.

“There are treatments and techniques that people can do and learn to help manage their symptoms and improve their quality of life,” said Dr. Lindsey McKernan, a clinical psychologist and researcher with Vanderbilt Urology and the Osher Center for Integrative Health.

What is interstitial cystitis?

Interstitial cystitis is a chronic bladder condition in which people feel bladder pain, pressure or pelvic discomfort, along with symptoms such a urinary frequency and urinary urgency.

Some people may feel pain as their bladder fills and they may feel like they need to go to the bathroom constantly. Yet when they go, they may barely urinate, if at all.

“Often people with the condition might have been examined for something like chronic urinary tract infection,” McKernan said. “Over time, they may have gone to their doctor and they haven’t had an infection but the symptoms feel like it.”

Some people may feel pain as their bladder fills and they may feel like they need to go to the bathroom constantly. Yet when they go, they may barely urinate, if at all. Blood in the urine is also a potential symptom.

Interstitial cystitis commonly overlaps with other pain conditions, such as chronic fatigue syndrome, chronic migraine, endometriosis, fibromyalgia, irritable bowel syndrome, low back pain, chronic tension headache, temporomandibular joint (TMJ) disorders, and vulvodynia, which is chronic pain of the vulva.

“For some people, some conditions are thought to have the same underlying mechanism, which is pain more central in the body rather than in one specific location,” McKernan said. “The bladder can be one area where pain shows up as part of a bigger picture.”

If you have unexplained pelvic pain and bladder issues, get an evaluation, McKernan urged. “If they’re having symptoms like bladder pain and urinary urgency, pelvic pressure, and they don’t have urinary tract infections and those symptoms persist, then it is time to reach out and consider having a consult with a urologist,” she said.

How is interstitial cystitis diagnosed?

“It is a diagnosis of exclusion,” McKernan said. “It’s a rule-out diagnosis, generally made by a urologist or gynecologist. Your doctor will take a thorough history and perform a medical exam, and possibly some additional testing to rule out other things that could be causing that kind of pain in the bladder.” Some people may have identifiable Hunner’s lesions, as well, that can be identified with a specific exam.

“For some people, it has taken a long time to get diagnosed.”

“For some people, it has taken a long time to get diagnosed,” McKernan said. “This may be due to first trying to manage symptoms independently, then being seen for symptoms in primary care before getting referred to urology to obtain an accurate diagnosis.”

McKernan’s research indicates that persons with interstitial cystitis, on average, experience a six-year delay after their symptoms start before receiving a diagnosis. “It is important to recognize symptoms and seek additional evaluation to prevent any further treatment delay,” she said.

Diagnosis and management are important. “Pelvic and bladder pain is real,” she explained. “And it can be debilitating. It can drastically affect a person’s quality of life. It can impact your ability to work, to spend time with your family, to engage in activities. It can affect your sleep and it can affect intimacy with partners.”

How is interstitial cystitis treated?

Interstitial cystitis is treated with a multimodal approach, McKernan said. A combination of lifestyle changes, medical treatments, procedures, stress management and pelvic floor physical therapy may help. Your doctor will individualize treatment to your unique needs and symptoms.

Vanderbilt has an integrative interstitial cystitis clinic that works to evaluate and treat the multiple influences. A medical team and health psychology team work together to develop individualized treatment plans to support care and manage symptoms.

Expert urological care

Vanderbilt Urology Clinic offers the latest, most comprehensive care for a wide range of urologic diseases and conditions, including cancers of the prostate, bladder and kidneys and other urologic cancers; incontinence and other bladder-control problems; kidney stones; and sexual health problems, including erectile dysfunction (impotence). Details: 615-322-2880.

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