What is Interstitial Cystitis?

8 min read  |  May 15, 2024  | 

Interstitial cystitis or bladder pain syndrome (IC/BPH) is a common condition, especially among women, but that doesn’t mean it is easily diagnosed. Raveen Syan, M.D., a urologist with the University of Miami Health System, says, “We really don’t know the causes; years of studies have not produced consistent findings. It is poorly understood, so it is underdiagnosed and undertreated.”

Any discussion of interstitial cystitis begins with the bladder. 

This hollow, muscular organ holds urine until full, then signals your brain that it’s time to pee. These signals are sent through nerves in your pelvic area. With IC, the bladder becomes inflamed and sends the wrong signals to the brain, creating an urgency to urinate even if you just went to the bathroom. IC can also cause pelvic pain and pressure, pain in the vaginal area, painful sex, and in men, pain in the perineum. 

IC can feel like a urinary tract infection (UTI). While a UTI can aggravate cystitis, and infections might trigger IC, Dr. Syan says there is little evidence to support it.

Some people also experience problems controlling urination or defecation because their lower pelvic muscles involuntarily and constantly spasm or contract. This condition, known as pelvic floor hypertonicity (PFH), can happen after a traumatic event, surgery, or from a medical condition. 

What causes IC?

Although the exact cause of IC has not been determined, experts in the field have identified three characteristic symptom types:

  1. Pain or discomfort that is primarily related to the bladder (during filling or emptying)
  2. Pain and tension in the pelvic floor
  3. Complex, overlapping pain conditions that are often chronic 

“Our group, the Desai Sethi Urology Institute, is exploring these phenotype findings and trying to determine the most effective treatments for these symptom groups,” Dr. Syan says. 

Scientists may not know what causes IC, but you can learn to recognize the things that aggravate your condition. 

“Stress is a known trigger, especially when it is not managed. Acidic, spicy foods, caffeine, and carbonated beverages are irritants. Some people may achieve improvement just by eliminating their triggers,” Dr. Syan says. 

While Dr. Syan educates her patients about the “very restrictive IC diet,” she recommends that they start by eliminating two or three obvious trigger foods or beverages and then eliminate a couple more. “Don’t let the IC diet create more stress.” Keep a food diary to recognize the connection between your symptoms and certain foods.

It’s not only what you put into your body that contributes to IC. 

“If you have a tight pelvic floor, Pilates or barre exercise, which intentionally strengthens the pelvic floor, can make the problem worse. Instead, try relaxation exercises such as yoga or stretching,” Dr. Syan says. You can return to Pilates or barre once your symptoms improve. 

Avoiding feminine hygiene products also improves pelvic health. “Vaginal products are unregulated and can be full of chemicals. The vagina is not meant to be cleaned; it has its own cleaning system,” Dr. Syan says. A daily shower provides sufficient cleansing. 

When should you see a doctor for IC?

“You shouldn’t experience pain in the bladder. If you do, see your primary care provider; you might have a UTI,” Dr. Syan says. She also recommends eliminating IC triggers for a week; if symptoms persist, see a urologist or gynecologist. “Gynecologists know when to refer you to a urologist.” During the week, you eliminate triggers and keep a bladder diary by tracking your symptoms, how much fluid you drink and how often, and how often you go to the bathroom. Share this information with your doctor. 

The bottom line? “When it impacts your life, see a doctor,” Dr. Syan says. “Impacts” could include painful urination, painful sex, or too many bathroom breaks interfering with your life. Under normal circumstances, you should empty your bladder every four hours, according to Dr. Syan. That said, some of her patients go every hour but don’t mind because they like to drink a lot of water. Pain, however, requires medical attention. Dr. Syan recommends asking your doctor, “Are you familiar with IC? If not, find another provider. You know your body. You have to advocate for yourself with poorly understood diseases. The IC Association has a physician directory, and the Urology Care Foundation has validated resources.” Dr. Syan serves on the Interstitial Cystitis Association Board. 

How to diagnose IC

To diagnose IC, your doctor may:

  • Perform a pelvic exam
  • Order a urine test to look for infection
  • Examine the inside of your bladder; this is done by inserting a thin, flexible tube with a camera attached through your urethra and into your bladder
  • Biopsy a tiny piece of bladder tissue to rule out bladder cancer

These are traditional ways of diagnosing IC, but a new, more accurate diagnostic tool should be available by the end of 2024. According to University of Miami professor and bioengineer John (Yingchun) Zhang, Ph.D.,  “Over 80% of patients have pelvic floor hypertonicity leading to IC. Traditionally, myofascial therapy has been used to try to relax the overactive muscles, but about 41% of patients don’t respond to myofascial therapy.” 

To address this challenge, Dr. Zhang has developed an intra-vaginal array sensing probe that measures muscle activity in patients with PFH. 

“This sensing technology measures muscle activity thousands of times per second from 64 locations. Within 30 seconds, we get a lot of data that allows us to do phenotyping of these patients,” Dr. Zhang says. Phenotyping helps physicians identify the characteristics of each patient’s symptoms. Dr. Zhang and Dr. Syan are starting a clinical trial at UHealth using the sensing probe to diagnose patients with PFH and IC. 

Dr. Zhang says the probe technology could help physicians accurately diagnose IC in two types of patients: 

  1. those with pelvic floor muscle overactivity
  2. those whose core muscle abnormalities trigger IC 

“There are many muscle groups in the core, including those in the hips, legs, abdomen, and lower back; they work closely with the pelvic floor muscles affecting IC,” Dr. Zhang says. He believes the intra-vaginal sensing probe will help physicians identify which overactive muscles are responsible for each patient’s IC. 

How to treat IC

Ease your symptoms by eliminating your triggers – whether that means:

  • managing stress
  • avoiding irritating foods and beverages
  • avoiding barre or Pilates workouts
  • taking the bathroom breaks your body needs 

A physical therapist specializing in pelvic floor therapy can teach you exercises that strengthen the pelvic floor and help control urination. “It’s like working with a personal trainer,” Dr. Syan says. 

If lifestyle changes don’t help, Dr. Syan may recommend medication. “Antidepressants correct inappropriate transmission of the brain signals that tell your bladder it’s full; it’s not that you’re depressed.” 

When inflammation is the underlying cause, she prescribes an antihistamine called hydroxyzine, which is taken as needed. Although some doctors prescribe elmiron, Dr. Syan says it should be used with great caution. “I don’t prescribe it because of the serious risk of irreversible eye damage.” 

When IC is not properly diagnosed, and the patient’s symptoms are not treated in a timely fashion, they run the risk of developing what Dr. Zhang calls “central sensitization.” 

As the brain becomes increasingly sensitized to pain, the brain responds by sending out more motor control signals, and the muscles contract even more. This debilitating loop results in pain that spreads beyond the pelvis to other parts of the body. 

Until recently, doctors have not had a good way to treat patients with widespread pain, but Dr. Zhang and Dr. Syan are developing transcranial stimulation (TMS) neuromodulation therapy to address this condition. “We use individualized neuromodulation to try to break this sensitization cycle and calm the brain signals.” Dr. Zhang says. 

Traditional neuromodulation therapy is already used in some patients. Similar to electrostimulation therapy for back pain, a physician implants a small device equipped with electrical leads just under the skin on the back or pelvis. The electrical leads deliver low-level stimulation to the nerves to reduce localized pain and the frequency of urination. 

“It is 70% effective, especially for an overactive bladder,” Dr. Syan says. 

While IC can frustrate patients and the doctors trying to help them, there are solutions patients can pursue on their own and with the help of a knowledgeable provider. Fortunately for people struggling with IC, physician-researchers like Dr. Syan and Dr. Zhang are working hard to develop more methods of diagnosing and treating this condition. 

“I do believe we can make a difference,” says Dr. Zhang. 

Nancy Moreland is a regular contributor to the UHealth Collective. She has written for several major health care systems and the CDC. Her writing also appears in the Chicago Tribune and U.S. News & World Report.

Tags: Dr. Raveen Syan, interstitial cystitis ic, irritate your bladder

Continue Reading