What Is Interstitial Cystitis?

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What Is Interstitial Cystitis?

Frequent trips to the bathroom. A constant urgency to urinate. Pain in the lower abdomen. If you have these symptoms, you might have a condition called interstitial cystitis, or IC, for short. What is IC and could having diabetes be a culprit?

Defining interstitial cystitis

Interstitial cystitis (IC) is a chronic condition that causes painful urinary symptoms. It’s a condition that is much more common in women than in men, although it affects men and women of all racial and ethnic backgrounds and ages, according to the CDC (Centers for Disease Control and Prevention). IC may affect between 3 million and 8 million women and between 1 million and 4 million men in the United States.

IC also goes by other names, including painful bladder syndrome (PBS), bladder pain syndrome (BPS), and chronic pelvic pain.

IC can greatly impact quality of life. Besides having to deal with painful, persistent symptoms, people with this condition may feel like they can’t leave their homes, exercise, or have meaningful relationships. Work life can be impacted, as well.

Types of interstitial cystitis

The Interstitial Cystitis Association (ICA) states that there are different subtypes of IC, which explains why symptoms can be different in different people, and why there are differences in how people respond to treatment.

The two subtypes of IC are:

  • Non-ulcerative: 90% of people with IC have this form, which presents with pinpoint hemorrhages in the bladder wall, says the ICA.
  • Ulcerative: 5% to 10% of people with IC have this form; they usually have red, bleeding areas on the bladder wall, called Hunner’s ulcers or patches.

Another form of IC is end-stage, or severe, IC which affects 5% of those with this condition. These people have persistent symptoms for more than two years, and may have “very hard bladders with low capacity and terrible pain,” says the ICA.

Interstitial cystitis symptoms

While the signs and symptoms of IC can vary from person to person, the most common signs and symptoms include:

Urgency

Feeling like you need to urinate right away, as well as pain or burning along with an urgent need to urinate, even if your bladder isn’t full.

Frequency

Urinating more often than you think you should need to, based on how much fluid you are drinking. You may have an urge to urinate many times a day.

Pain

As the bladder fills up, you may have pain that worsens until you urinate. Once you empty your bladder, the pain usually improves. You might not have pain for weeks or months, and then it can return. Chronic pelvic pain is another symptom, as is pain during sex.

The symptoms of IC can be similar to those of a urinary tract infection (UTI). However, there’s usually no infection with a UTI. Symptoms can worsen if you have IC and get a UTI.

Causes of interstitial cystitis

The exact cause or causes of IC aren’t known. Certain events, factors, or triggers may cause symptoms to flare up, however, such as:

  • Mental or emotional stress
  • Sex
  • Menstrual cycles
  • UTI
  • Holding urine for too long
  • Allergies
  • Changes in seasons or the weather
  • Skipping meals
  • Becoming dehydrated
  • Tight pants or underwear
  • Certain types of laundry detergent or toilet paper
  • Some medications, like antidepressants, sinus medicines, or pain relievers

Other triggers that involve damage to the bladder or bladder lining may be:

  • Pelvic surgery
  • Pelvic floor muscle dysfunction
  • Autoimmune disorders
  • Primary neurogenic inflammation (inflammation of the pelvic nerves)
  • Spinal cord trauma

Foods and interstitial cystitis

Some people with IC find that certain foods can worsen symptoms. These include:

  • Citrus fruits
  • Tomatoes
  • Hot peppers
  • Spicy foods
  • Foods high in potassium
  • Chocolate
  • Coffee
  • Caffeinated drinks
  • Alcoholic drinks
  • Nonnutritive sweeteners

A list of the least and most bothersome foods on the ICA’s website can be found here.

Who gets interstitial cystitis?

People with IC may also have other chronic conditions:

  • Allergies
  • Asthma
  • Endometriosis
  • Irritable bowel syndrome
  • Vulvodynia
  • Fibromyalgia
  • Lupus
  • Celiac disease

People who have diabetes may also be prone to getting IC, along with other bladder issues such as frequent UTIs and a condition called neurogenic bladder, a condition in which the person lacks bladder control due to a brain, spinal cord, or nerve condition.

Diagnosing interstitial cystitis

Your health care provider uses a combination of approaches to diagnose IC, including your medical history, a physical exam, and lab tests.

IC is diagnosed based on:

  • Pain in the bladder, along with urinary frequency and urgency
  • Absence of other conditions or diseases that could cause similar symptoms, including a UTI, bladder cancer, endometriosis (in women), or prostate problems (in men)

Various tests that are used to diagnose IC include:

  • A urinalysis and urine culture to check for infection.
  • Cystoscopy, which is a thin tube with a camera inserted through the urethra to look at the lining of the bladder.
  • Hydrodistension, in which liquid is injected into the bladder to measure capacity.
  • Biopsy of tissue from the bladder and urethra to check for cancer or other conditions.
  • A potassium sensitivity test, in which two solutions (one water, one potassium chloride) are instilled into the bladder, one at a time. If you feel more pain or urgency with the potassium solution, you may have IC.

Treating interstitial cystitis

There is no one treatment for IC that will work for everyone with this condition. You will likely need to experiment with different treatments (or a combination of treatments) to find an approach that works for you.

Treatment approaches often include:

Lifestyle approaches

Changing your food choices, stopping smoking, reducing stress, and doing regular physical activity can help relieve symptoms.

Bladder training

Keeping a bladder diary can help you track the frequency of urination, and then stretch out the time between trips to the bathroom.

Physical therapy

Physical therapy can be helpful if you have pelvic floor muscle spasms or muscle tenderness/pain.

Medication

A number of oral medicines can help with symptoms, including nonsteroidal anti-inflammatory drugs, antidepressants, antihistamines, cyclosporine, or pentosan polysulfate (brand name Elmiron). Other pain medicines might be prescribed, based on the extent of the pain.

Bladder instillation

With this procedure, a doctor puts a small amount of liquid medicine in the bladder, and then adds liquid to ease irritation of the bladder wall.

Nerve stimulation

Transcutaneous electrical nerve stimulation (TENS) or sacral nerve stimulation both use thin wires to send electrical impulses to the pelvic area or bladder to alleviate symptoms.

Surgery

If the above options do not work, surgery might be considered to make the bladder larger, remove the bladder (cystectomy), or reroute the flow of urine (urinary diversion). Surgery may not ease pain in all cases.

Interstitial cystitis is a chronic condition, but it’s not life-threatening and it does not cause cancer. If you have or think you have IC, talk with your health care provider, and be sure to find sources of support. The Interstitial Cystitis Association is a wealth of information to help you live with and manage this condition.

Want to know more about urinary tract health? Read “What You Need to Know About UTIs,” “Diabetes and Chronic UTIs: Questions and Answers,” “What Is Your Urine Trying to Tell You?” and “Resolving Diabetes-Related Bladder Problems.”

Amy Campbell, MS, RD, LDN, CDCES

Amy Campbell, MS, RD, LDN, CDCES

Amy Campbell, MS, RD, LDN, CDCES on social media

A Registered Dietitian and Certified Diabetes Educator at Good Measures, LLC, where she is a CDE manager for a virtual diabetes program. Campbell is the author of Staying Healthy with Diabetes: Nutrition & Meal Planning, a co-author of 16 Myths of a Diabetic Diet, and has written for  publications including Diabetes Self-Management, Diabetes Spectrum, Clinical Diabetes, the Diabetes Research & Wellness Foundation’s newsletter, DiabeticConnect.com, and CDiabetes.com

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