Newly Diagnosed Toolkit
When first diagnosed with interstitial cystitis (IC) you may feel alone. Don’t — 4 to 12 Million May Have IC. This toolkit will help guide you through what to do after you are diagnosed.
I Have IC, Now What?
Learn what your next steps should be in this video:
Top Questions IC Patients Ask
Many IC patients find some pain relief from performing simple techniques that can be done at home:
- Place a cold pack, heating pad or hot water bottle directly on the perineum. Experiment to see whether cold or heat works best for you. Women place in the area between the anus and vagina; men in the area between the anus and base of penis.
- Take a warm sitz bath, with or without Epsom salts. Draw a small amount of water into the bathtub or use a plastic sitz bath (available at drug stores), which fits over the toilet.
- Place your knees against your chest, reclining with spread legs or adopting a squatting position.
- Drink a steady intake of water to reduce constipation and prevent your urine from becoming too concentrated or acidic.
- Take Calcium Glycerophosphate daily to reduce unintended acids in your diet and decrease IC symptoms which result from ingesting bladder irritants.
- Rest when you are able. Stress and fatigue can make your body perceive pain signals at a higher level.
- Ask your doctor if you can supplement your current treatment plan with L-arginine, Chondroitin Sulfate, IC-safe Aloe Vera, and/or Probiotics. Studies indicate these can be helpful in reducing IC symptoms.
- Keeping a pain diary can also be helpful in determining patterns and triggers for pain and can help healthcare providers to prescribe the most appropriate individual treatment plan.
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.
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.
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 in our Guide to Intimacy and IC.
Top Treatments for IC
Top Money-Saving Tips for IC Patients
It is important to not only manage your IC symptoms, but also the burden that IC may put on your wallet. Here are the top ways to save: