There is currently no cure for IC. However, IC is more manageable than ever before. Download a copy of the IC treatment guidelines. Print it out and share it with your healthcare provider. There are also new treatments in clinical trial that are giving IC patients hope. The ICA Pilot Research Program provides researchers with the vital initial funding they need to get their IC projects “off the ground” and give people affected by IC hope that there will soon be a world free of IC pain and symptoms. Donating to ICA helps raise much needed funds for advocacy, education and research.
There is no standard protocol for how often an IC patient gets rechecked by their healthcare provider after being diagnosed with IC. You need to work closely with your healthcare team to get symptoms in control. This may mean seeing your doctor or healthcare provider more frequently at first. Also, you need to check in with your healthcare provider if your symptoms flare, you have new or worsening symptoms, or there is blood in your urine. In addition, if your symptoms are not responding to therapy you’ll need to see your doctor more often. And, many healthcare providers like to see you on a regular basis, especially if you are on medication. Similar to the management of other chronic conditions, how often you need to go for follow up appointments depends on your specific treatment plan and how you feel.
Low back pain is a common complaint for many people with IC. It is recognized as a symptom of pelvic floor dysfunction (PFD). Low back muscles in spasm can strain muscles in the pelvic area contributing to pain in the pelvic area. If your back is hurting, talk with your healthcare provider. Your primary care provider can decide if a diagnostic workup or other testing is required to rule out other reasons for the pain.
Many IC patients notice blood in their urine and wonder if this is related to IC. It is not unusual for some blood to be found in urine of anyone, including those without IC or other health problems. That said, call your doctor if you notice blood in your urine; it’s important to get checked. It may be nothing, or it may be a sign of infection or other medical problems such as kidney stones or cancer.
A swelling of the belly is a frequent complaint among IC patients and seems to be more common during periods of greater discomfort and pain. If you have swelling in your stomach or pelvic area, talk with your healthcare provider. Get checked to make sure that the swelling is not a sign of infection or some other medical problem. Ask about your treatment options to better control IC symptoms.
Yes. There are two types of IC: (1) Non-ulcerative IC and (2) Ulcerative IC (Hunner’s patches or ulcers). The Multidisciplinary Approach to the Study of Chronic Pelvic Pain (MAPP) Research Network, sponsored by the National Institutes of Health (NIH), is further investigating IC and the different subtypes of the condition.
Many IC patients (men and women) have problems with pain — before, during and after sexual intercourse. Loss of sex drive can also occur in IC patients. But there is hope. Learn more about being intimate while having IC.
In the majority of IC patients, IC is not a progressive disease. There is little evidence to suggest that IC symptoms and characteristics of IC pain tend to worsen with time. It is thought that the earlier a diagnosis of IC is made, the better the chance of treatment response. For many IC patients, symptoms tend to wax and wane, and some IC patients experience remissions for extended periods of time. In a small percentage of patients, IC can worsen rapidly, causing the bladder to decrease in size, reducing its ability to hold a normal volume of urine.
No. It is important, however, to completely exclude bladder cancer when making the diagnosis of interstitial cystitis. Your urologist will look for cancer if you undergo cystoscopy with hydrodistention to help diagnose IC. Urine cytology (the study of cells within the urine) and bladder biopsy may also be needed to completely rule out bladder cancer.
Having treated more than 800 IC patients, I have found that an IC diagnosis most always can be made without having to use invasive techniques such as cystoscopy with hydrodistention of the bladder under anesthesia or the Potassium Sensitivity Test, both of which can trigger even more pain. In fact, the American Urological Association (AUA) clinical guidelines for the diagnosis and treatment of IC state that cystoscopy and/or urodynamics are not necessary to diagnosis IC in most patients. The guidelines also state that the Potassium Sensitivity Test is not a useful diagnostic tool for IC. It is most common among practitioners who see and treat IC patients on a regular basis to diagnose IC by simply getting a good history of urinary frequency and urgency associated with any type of persistent pain in the pelvic region, making sure that urine cultures are negative, and ruling out other conditions such as overactive bladder or prostatitis in men. Along with this criteria, finding that the base of the bladder is significantly tender and sensitive via intra-vaginal examination in female patients, or finding that the base of the urethra in the scrotal midline is tender and sensitive in male patients may “clinch” the diagnosis of IC.
This question was answered in the ICA webinar, IC’s Role in CAPPS, featuring Dr. Robert Echenberg. View the webinar to learn more about this topic.
Revised Monday, March 30th, 2015