The time leading to diagnosis is one of the many frustrating aspects of interstitial cystitis. There is no single test that can diagnose IC, and its symptoms mimic those of many other medical conditions involving the pelvic and/or reproductive organs. Often patients will consult with several healthcare professionals over a long period of time before learning they have IC.
By consulting with physicians who have particular expertise in IC, affected patients can be more assured of receiving a timely diagnosis, followed by appropriate treatment. Urologists or gynecologists have specialized training and clinical experience and therefore, may be more familiar with the diagnosis and treatment of IC. Urologists are physicians who have received special training to diagnose and treat disorders of the urinary and genital tracts. Gynecologists are physicians who have completed special training to diagnose and treat disorders and conditions of the female reproductive and urinary systems.
To find a healthcare professional near you who is familiar with identifying the symptoms of interstitial cystitis, as well as with treating the condition,
click here.
When you visit a healthcare professional about symptoms that might be IC, it's a good idea to be as prepared as possible. We offer 2 tools, described below, that can provide you with valuable information to take to your visit with your healthcare professional.
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Symptom Tracker: This tool gives you an easy way to record how often you urinate, your level of pain, and location of pain. It will also help you determine what kinds of foods, if any, make your symptoms worse, so you can avoid them.
- Self-Test Results: Take the Self-Test for Women or the Take the Self-Test for Men. This simple screening tool will help you and your healthcare professional evaluate symptoms that may be caused by interstitial cystitis. Patients with higher scores are more likely to have interstitial cystitis, although diagnosis of this condition cannot be made on the basis of this screening tool alone.
When you visit your healthcare professional, it is also a good idea to have a list of questions and a pencil to take notes. This will help ensure you get the most of your visit and take home specific information that you can later review and, perhaps, share with others you wish to involve in your treatment decision making. Please read through our suggested questions and add any of your own to the list.
Questions about Interstitial Cystitis
- What is interstitial cystitis?
- What is causing my pain?
- Why do I have to urinate so often?
- How did I get IC?
- Is IC contagious?
- Is it hereditary?
- Will IC affect my sex life?
- How is IC diagnosed?
- Is the diagnosis a painful procedure?
Questions about Treating IC
- What are the treatments for IC?
- Are these treatments uncomfortable or painful?
- How effective are these treatments?
- How long will the treatments take to work?
- Will I have to have surgery?
- What hope is there of getting better?
Questions about a Treatment Your Doctor Might Recommend
- Is the treatment approved by the FDA for IC?
- Does it treat the cause of IC?
- What is its safety profile?
- Can it be taken with other medications?
- Does it provide long-lasting relief?
Questions about Managing IC
- Should I stay away from certain types of foods? If so, which foods should I avoid?
- What happens if I do not avoid these foods?
- What support groups and/or organizations might I contact?
- Where can I get more information?
If Your Healthcare Professional Discounts Your Symptoms
Even if you choose a qualified healthcare professional and come to the visit prepared with your completed Symptom Tracker, Self-Test Results and a list of questions, you may find that the physician doesn't quite understand your symptoms or what you are going through. We hope this doesn't happen to you, but if it does, our suggested responses may help you better communicate with the physician.
If the healthcare professional says...
"I have good news—your urine test is negative. There is nothing wrong with you."
You may want to consider a response like...
"Actually, that is disappointing news to me, because I know there is something wrong with me. I have to find out what it is or these symptoms will keep making me miserable. What other diagnostic options would you recommend?"
If the healthcare professional says...
"You seem very healthy to me. Perhaps you just have a low tolerance for pain."
You may want to consider a response like...
"Doctor, whether or not I am sensitive to pain is not the issue. Let me assure you that my pain is very real. If you don't feel able to help me, perhaps you could recommend a physician who may have a different viewpoint."
If the healthcare professional says...
"I can find no physical cause for your symptoms. Perhaps you are under too much stress these days or something else is bothering you. A mental health professional might be able to help you."
You may want to consider a response like...
"Doctor, I respect your opinion, but I am afraid I don't agree with you. My symptoms are very real, and I believe that there must be a physical cause for them. Could your recommend a urologist or other medical specialist?"
