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Before we go one step further, let's reiterate that having IC is NOT your fault. But, it is your responsibility to learn as much as you can about treating IC, treating pain (if needed) and building your personal skills. The gift of this experience is that you will never, ever walk away from someone in pain. You know what it is like to be alone and suffering. You know how important it is to reach out a hand in friendship and support.

IC patients often make two mistakes:

(1) Some give the burden of health care to their physician. They walk into their doctor’s office demanding medication. They expect a pain pill or anything simple that will make IC go away. Yes, medication is appropriate at times, but it's not the only strategy that can reduce discomfort. Be willing to explore the wide variety of self help strategies discussed in the ICN Patient Handbook. With current law in the USA, if your physician is prescribing stronger pain medication, they must justify the need for that in your medical records. Bring your pain and voiding log to your appointments. Share copies with your physician and make a list of the non-medication strategies that you are also using. This will demonstrate that you aren't "drug seeking" and are responsible, active patients building all of your personal skills.

(2) Some don't communicate with their doctors about how much it really hurts. Women often feel embarrassed to talk about it, especially if they have discomfort around the clitoris. Men worry about not being perceived as "a strong man." It is not your burden to live life in pain. It is important that you tell your doctor exactly how you feel. Where does it hurt? How often does it hurt? What does it feel like? Is it dull? Sharp? Does it feel hot? or Electrical? Is it localized in your abdomen, or is it your urethra that hurts the most? Be as specific as you can be.

Pain left untreated may cause physiological changes in the body that can prolong pain, perhaps indefinitely. This is called "central sensitization" and explains why patients who have their bladder removed, often still experience bladder pain. It is vital that you seek treatments that will reduce the inflammation in your bladder and control pain. A great reference book is The Interstitial Cystitis Survival Guide by Robert Moldwin, which talks clearly about all of the current treatment options available and has an awesome section on the use of pain medications. It’s only $14.95 and available for purchase through the ICN Marketplace. See below for more info.

How can patients help themselves?

1. Document your IC symptoms, voiding and pain with a diary. Keep track of it on a daily basis so that you can help your doctor understand what is happening with your body.

2. Talk with other patients about how they handle their flares via our message boards. Check out our page on common flare coping strategies, like using heat, a TENS, etc. Talk with your physician about other suggestions.

3. If you've always been a junk food junkie, living on diet soda and coffee, then IC is your reason for finally eating healthy, fresh food. There's no doubt that diet can cause intense discomfort and pain for some patients. You wouldn't pour diet soda, coffee or acid on a wound on your hand, so why are you pouring it on a wound in your bladder. Wouldn't that create more irritation in that wound over time? Wouldn't that prevent healing? Yet, it would. So, take the challenge. Go a week, two weeks or a month without coffee or soda and see how your feel. Odds are, you'll be feeling much better because your bladder won't be irritated every day.

4. If you're addicted to cigarettes, then IC and a threat of bladder cancer (well documented as a result of smoking) is the perfect excuse to quit.

5. If you're in a job that you hate, then consider this the chance to look for a career or an employer who will make you feel better personally as well as to be gentler on your body. It's not your burden to exist in the job from hell. Look for other opportunities. Remember the golden rule... don't quit your current job until you have a new job.

6. Surround yourself with friends and family who believe in you. Walk away from poison relationships. Focus on encouraging, helpful and healthy relationships.

7. If you're in a relationship that is abusive, ask for help from a professional. Non-profits around the country provide shelters for women (and men) in difficult situations. Talk with a minister or counselor and look for ways to make your life safer. Just because you have IC doesn’t mean that you deserve abuse. You deserve loving care and compassion.

8. Make your home more comfortable and stress free. If you're worried about keeping your house clean, take it slowly. Do one task a day. Ask your friends to come over for a special painting or cleaning day. Your friends want to help you. Give them the chance. If you can afford it, consider hiring a cleaning service once or twice a month.

9. Exercise gently when you're up to it. Our bodies are made of muscle that likes to move. So, give your body a chance to maintain muscle health. Every morning, walk for ten minutes even if it is just around your neighborhood or house. But, if it hurts, stop and rest. Don't push through the pain. Wait for another day.

10. Be honest about your anger and do something about it. IC patients are often very angry and irritable. Who wouldn't be if they were up all night in a flare? Don't take it out on your family and those that you love. It's not your fault or their fault that you have IC. Find a healthier way to express it. Writing in a journal every day can be a great way to purge those feelings first thing in the morning so that you can approach the day with a lighter heart.

11. Build your relaxation and stress management skills. We're not born with the skills to handle the new stresses of IC. We have to learn them. We recommend the "The Relaxation and Stress Workbook" as a good way to begin. Remember, the more relaxed you are, the better.

12. Build better communication skills. Married couples can have a difficult time when one partner has IC or any illness. Sex can become a very sensitive topic, particularly if the IC patient has to say "No" and the partner interprets that as an "I don't love you anymore" statement. Every relationship runs the risk of illness. The partner with IC didn't ask for it. The partner supporting the IC patient never imagined that they would have to talk about bladders so much. But, both should realize that the situation could be easily reversed. So, if you're having trouble communicating to each other, seek out guidance from a minister, good friend or therapist. Don't expect to be able to read the minds of your partner, or that they can read yours. You need to learn how to talk about it more effectively.

13. Prevent isolation and depression. It's very easy to stay at home, alone. Yes, some friends and family don't understand. Some may walk away. But you will also have those who believe in you and you can make new friends with other, compassionate IC patients. Don't go 24 hours without calling and talking with someone. Break the isolation of IC. Have a video party. Invite friends over to lunch. Go to church. Life doesn't end with IC and new, wonderful things are in your future. Who knows, you may be the patient who testifies next in front of Congress!

14. Reward yourself frequently. Having IC takes a lot hard work that people around you may not notice. As you’re working, caring for your family and/or children, caring for your house, having medical tests, trying treatments, you could be feeling frustrated that no one seems to notice. You’ve never worked harder than you are doing today. So, reward yourself! Dedicate one afternoon a week to a fun activity that you will enjoy doing, whether it be a video, a walk in the park, a visit with friends, or some time alone to walk through a bookstore.

Remember and honor your strength in 2001! You have never been more prepared to handle whatever happens in your life than you are today, because you are truly one day older and one day wiser.