Are you struggling with bladder pain, urinary urgency, and urinary frequency? If so, you may be among the millions of men and women who have interstitial cystitis (IC). Whether your healthcare provider has already diagnosed you with IC or you suspect that you or a loved one may have this condition, the Interstitial Cystitis Association (ICA) will give you the tools and information you need to help you understand and better manage your symptoms. Para información en español, haz clic aquí.

There is hope. We are here to give you the help you need.

Know the Symptoms of IC

Pain is the hallmark symptom of IC—especially pain that worsens with specific food or drink or as your bladder fills and the pain gets better with urination. Pain may also be described as pressure and/or discomfort. You may have pain located in the lower abdominal, urethral, or vaginal area. Pain is also frequently associated with sexual intercourse. Men may experience testicular, scrotal, and/or perineal pain as well as painful ejaculation.

Urinary symptoms of IC include frequency and urgency. You may have to urinate frequently—up to 60 times a day in severe cases. Frequency may cause you to wake up more than once a night to urinate. In early or very mild cases of IC, frequency is sometimes the only symptom. Urinary urgency is the sensation of having to urinate immediately, which may also be accompanied by pain, pressure, or spasms.

To assess your symptoms, answer the following questions:

  • Do you have pain and/or pressure in your lower abdomen?
  • Do you urinate frequently?
  • Do you have an urgent need to urinate day and night?
  • Do some foods and/or beverages make your symptoms worse? If yes, which foods and/or beverages?
  • Do you find that certain types of exercise make your symptoms worse? If yes, which types of exercise?
  • Do you have pain during and/or following sexual intercourse?
  • If you are a man, do you have discomfort or pain in the penis or scrotum?
  • Do tests of your urine fail to show any signs of bacterial infection?

If you answered yes to any of these questions, it is important to talk with your doctor about these symptoms.

Talk With Your Doctor

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If you have the symptoms of IC, the next step in finding relief for the pain and discomfort is getting a proper diagnosis. Discuss your symptoms with your doctor. Ask them if you might have IC. It is also important to ask about patient care. Sample questions to ask include:

  • Do you have a set time for returning telephone calls from patients?
  • How quickly do you usually respond to patient calls?
  • Do you use email to communicate with patients?
  • How quickly do you respond to emails?
  • Is a doctor responsible for all follow up care or will I see a nurse, nurse practitioner, or physician assistant?
  • Does your practice include a dietitian for nutrition counseling?
  • Do you work with physical therapists?

Find an IC Healthcare Provider

If your doctor does not diagnose and treat IC, it is important to find one that does. The ICA Healthcare Provider Registry includes clinicians who have agreed to be a referral source for IC patients. Types of healthcare providers on this list include urologists, gynecologists, urogynecologists, primary care practitioners, nurse practitioners, physician assistants, and dietitians.

Get a Diagnosis

A diagnosis of IC is based on the presence of IC symptoms and the absence of other diseases that could cause these symptoms, such as a urinary tract infection (UTI). Also, your symptoms need to persist for more than six weeks.

At your initial evaluation, your doctor will start with a careful history, physical exam, and lab tests to rule in IC symptoms and rule out other conditions. During your physical exam, the doctor will check your abdomen and pelvic area for tenderness. Your doctor may use questionnaires to help evaluate the severity of your symptoms. You may also be asked to keep a pain diary in order for your doctor to assess your pain.

Some cases of IC are complicated and may require additional diagnostic testing. A urologist may perform additional testing if there are signs and symptoms of other problems, such as incontinence, overactive bladder, blood or pus in the urine, endometriosis, gastrointestinal conditions, or chronic prostatitis/chronic pelvic pain syndrome (CP/CPPS) in men. Additional testing may also need to be performed if you have a history of smoking, because smoking increases your risk of bladder cancer. Examples of additional testing include urodynamics and cystoscopy with hydrodistention under anesthesia.

So you have IC, Now what?

Being properly diagnosed is a huge step towards managing your IC symptoms.

Find IC Treatments

At this time there is no cure for IC. However, there are many available treatment options to help relieve your symptoms of bladder pain, urgency, and frequency. A combination of treatments is the best approach in managing your IC. Finding your optimal treatment plan may also require a period of trial and error. The following is a list of treatment options for IC, starting with the least invasive treatments and ending with the most invasive treatments. Only when less invasive treatments fail to control your symptoms or improve your quality of life should you and your healthcare provider consider more invasive treatments.

  • Avoiding diet triggers is a lifestyle change you can make to control your IC symptoms. It may be helpful to limit certain foods and beverages that may be irritating to the bladder, including coffee, tea, soda, alcohol, citrus juices, and cranberry juice. For some, hot peppers and spicy foods may also be a problem, as well as foods and beverages containing artificial sweeteners. How much, how often, and the specific combinations of foods and beverages that affect symptoms are different for each person with IC.
  • Other self management techniques include learning to urinate on a set schedule and not when your bladder tells you to (bladder retraining), managing your stress, and developing healthy sleep habits.
  • Over-the-counter products such as neutraceuticals, calcium glycerophosphates (Prelief), Pyridium (phenazopyridine) are available without a prescription at drug stores and pharmacies and are helpful for mild to moderate pain. Ask your doctor if any of the following medicines might help you manage your IC pain.
  • Complementary and alternative medicine (CAM) refers to health care systems, practices, and products that are not part of the conventional medicine treatment approaches. CAM therapies most often used to treat IC symptoms include biofeedback, herbal remedies, massage, yoga, and Pilates.
  • Physical therapy can treat pelvic floor muscle dysfunction—a cause of IC in some patients. If these muscles are tight or in spasm, have a combination of tightness and weakness, or have pain-triggering spots or knots called “trigger points,” a physical therapist can use hands on therapy and tools to treat these issues.
  • Prescription medications your healthcare provider can prescribe include antidepressants, antihistamines, pentosan polysulfate sodium, H2 blockers, and more. You may also be prescribed bladder instillations—medicine your healthcare provider puts directly into your bladder via catheter. Common types of instillations include DMSO, sodium hyaluronate, and heparin.
  • Removal of Hunner’s ulcers (also known as Hunner’s lesions) can reduce symptoms significantly. If you have these areas of inflammation in your bladder, your physician can take them off with electrodes, laser, or inject them with the steroid triamcinolone (Kenalog) into the lesions.
  • Cystoscopy with hydrodistention under anesthesia may reduce pain and discomfort in some IC patients, which can last 3 to 6 months. However, not everyone benefits from this procedure, and it may take up to several weeks to notice any symptom improvement. Symptoms may actually worsen before they improve with this procedure. Exactly why it has therapeutic benefits for some is not currently known.
  • Neuromodulators, also known as electrical nerve stimulators, send mild electrical pulses to nerves in the lower back and help manage urinary function. Neuromodulators have been helpful for IC patients who don’t get enough relief from other therapies.
  • Cyclosporine (an immunosuppressant) may be used when other treatments haven’t helped enough or you and your doctor agree your symptoms justify it. The risk of side effects is high, so it is important to work with a healthcare professional experienced with this drug.
  • Botulinum toxin A (Botox) injections into the bladder muscle are only considered when other treatments haven’t helped enough or you and your doctor agree your symptoms justify it. Side effects can be difficult, including painful urination and retention that may require you to catheterize yourself for quite some time.
  • Major surgery (bladder removal or enlargement or urinary diversion) is only considered as a last resort when everything else has failed.

Learn more about treatments for IC from the ICA’s two-page, easy-to-read summary of the American Urological Associations (AUA) IC guidelines.

Get Support

Remember, the ICA is here to help! We are here to provide you all of the resources you need to cope with the urgency, frequency, and bladder pain of IC. Donate to the ICA to receive the ICA Update, an award-winning magazine that focuses on current IC research, treatment, and lifestyle issues. Sign up for the ICA eNews and follow the ICA on Twitter, YouTube, and iTunes to stay up-to-date on IC news and events. Have an IC-related question? Ask us!

We also offer ways to connect with others who have IC. Read patients’ stories on the ICA’s Voices of Hope Blog. Connect with other IC patients on the ICA’s Facebook page. Find a support group in your area.

Because IC is as concerning for those that love and care for the ones suffering as it is for those experiencing the condition, the ICA offers information on caregiver support.

Support ICA

With the generosity of individuals like you, the ICA provides advocacy, research funding, and education to ensure early diagnosis and optimal care with dignity for people affected by IC. By supporting ICA, you’ll directly help yourself and those who need our help most – other IC sufferers. You’ll also receive access to valuable and informative resources that will keep you abreast of the latest IC research, news, and ICA announcements. Donate today!

Spread the Knowledge

The more people know what is causing their urinary urgency, urinary frequency, and bladder pain, the less they will go undiagnosed and untreated, and potentially suffering with IC symptoms alone. Please join our efforts in spreading the knowledge by sharing this page on Facebook, Twitter, and other social media platforms.

Disclaimer: The ICA does not engage in the practice of medicine. It is not a medical authority nor does it claim to have medical knowledge. In all cases, the ICA recommends that you consult your own physician regarding any course of treatment or medication. This public service awareness campaign was supported by the Cooperative Agreement Number 5U58DP002936-02 from The Centers for Disease Control and Prevention. Its contents are solely the responsibility of the authors and do not necessarily represent the official views of The Centers for Disease Control and Prevention.

Revised Monday, March 28th, 2016