Know the Symptoms. Get the Facts.
- Know the Symptoms of IC
- Talk With A Doctor
- Find an IC Healthcare Provider
- Get a Diagnosis
- Find IC Treatments
- Get Support
- Spread the Knowledge
Individuals struggling with bladder pain, urinary urgency, and urinary frequency may be among the millions of men and women who have interstitial cystitis (IC). Whether a healthcare provider has already made a diagnosis of IC or an individual suspects that they or a loved one may have this condition, the Interstitial Cystitis Association (ICA) will provide the tools and information needed to help understand and better manage symptoms. Para información en español, haz clic aquí.
Know the Symptoms of IC
Pain is the hallmark symptom of IC—especially pain that worsens with specific food or drink or as the bladder fills and the pain gets better with urination. Pain may also be described as pressure and/or discomfort. There may also be 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. Individuals with IC may have to urinate frequently—up to 60 times a day in severe cases. Frequency may cause an individual 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.
- Experiencing pain and/or pressure in the lower abdomen?
- Suffering from frequent urination?
- Is there an urgent need to urinate day and night?
- Do some foods and/or beverages make symptoms worse? If yes, which foods and/or beverages?
- Do certain types of exercise make symptoms worse? If yes, which types of exercise?
- Is there pain during and/or following sexual intercourse?
- If a man, is there discomfort or pain in the penis or scrotum?
- Do urine tests fail to show any signs of bacterial infection?
If the answer is yes to any of these questions, it is important to talk with a doctor about these symptoms.
Talk With A Doctor
If there are symptoms of IC, the next step in finding relief for the pain and discomfort is getting a proper diagnosis. Discuss symptoms with a doctor and ask if they might be tied to IC. It is also important to ask about patient care. Sample questions to ask include:
- Is there a set time for returning telephone calls from patients?
- How quickly do doctors usually respond to patient calls?
- Do the doctors and staff use email to communicate with patients?
- How quickly do providers and/or staff respond to emails?
- Is a doctor responsible for all follow up care or will a patient see a nurse, nurse practitioner, or physician assistant?
- Does this practice include a dietitian for nutrition counseling?
- Do this practice work with physical therapists?
Find an IC Healthcare Provider
If a 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.
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, symptoms need to persist for more than six weeks.
At the initial evaluation, a doctor will start with a careful history, physical exam, and lab tests to rule in IC symptoms and rule out other conditions. During the physical exam, the doctor will check the abdomen and pelvic area for tenderness. The doctor may use questionnaires to help evaluate the severity of symptoms. A patient may also be asked to keep a pain diary in order for the doctor to assess the 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 there is a history of smoking, because smoking increases the risk of bladder cancer. Examples of additional testing include urodynamics and cystoscopy with hydrodistention under anesthesia.
Being properly diagnosed is a huge step towards managing the IC symptoms.
At this time there is no cure for IC. However, there are many available treatment options to help relieve the symptoms of bladder pain, urgency, and frequency. A combination of treatments is the best approach in managing IC. Finding the 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 symptoms or improve quality of life should individuals and their healthcare providers consider more invasive treatments.
- Avoiding diet triggers is a lifestyle change that can help to control 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 the bladder says to (bladder retraining), managing 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 a doctor if any of the following medicines might help manage 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 healthcare providers can prescribe include antidepressants, antihistamines, pentosan polysulfate sodium, H2 blockers, and more. They may also prescribe bladder instillations—medicine a healthcare provider puts directly into the 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 these areas of inflammation are present in the bladder, a 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 there is agreement with the doctor that the 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 there is agreement with the doctor that the symptoms justify it. Side effects can be difficult, including painful urination and retention that may require self-catheterization 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.
Remember, the ICA is here to help! We are here to provide all of the resources needed 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 the 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.
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 Thursday, July 26th, 2018