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Please Read Our Disclaimer

Revision: August 2001
Diane Manhattan

Created: June 1999
Jill Osborne

When we were born, no one promised that we would have a pain free life. In fact, it is a normal, albeit very uncomfortable, part of life. Pain happens. Accidents happen. IC happened. Before we go one step further, let's reiterate that having IC and pain is NOT your fault. But, it is your responsibility to learn as much as you can about treating IC, treating pain 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.

Pain patients often make two mistakes:

(1) Some give the burden of pain care to their physician. They walk into their doctors office demanding medication. They expect a pain pill or anything simple that will make IC go away. Yes, pain 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 later in this chapter and in other parts of our 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 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 a responsible, active patient building all of your personal skills.

(2) Some don't communicate with their doctors about how much it really hurts. Women often feel embarassed to talk about it. 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" (nerves in the spine become more excitable) and explains why patients who have their bladder removed, often still experience bladder pain.

How can patients help themselves? Look at IC as a chance to make some important, long awaited changes in your life.

• Document your pain with a pain diary. Keep track of it on a daily basis so that you can help your doctor understand what is happening with your body.
• Learn and talk with other patients about how they handle their flares. Check out our page on common flare coping strategies, like using heat, a TENS, etc. Try them. Use them. Talk with your physician about other suggestions.
  
  
• 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.
• 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.

• If you're in a job that you hate, then consider this the chance to look for a career or a employer who will make you feel better personally as well as to be more gentle 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.

• Surround yourself with friends and family who believe in you. Walk away from poison relationships right now. Focus on encouraging, helpful and healthy relationships.
• 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.
  
  
• 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.
• 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.
• 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.
• 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.
• Build your 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. You need to learn how to talk about it more effectively.
• 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!.

Your Rights as a Pain Patient

Unfortunately, chronic pain patients around the world are faced with a medical community which has yet to make up its mind on the management of "intractable non-malignant" pain. Some physicians routinely deny pain medications to those without a cancer diagnosis, while others understand that pain left untreated is one of the worst things a physician can do.

Physicians have also been trained to "look" for visable sources of pain. Yet, when an IC patient walks through the door, looking and acting normally even though they are in pain, some physicians may doubt their request for help. This is particularly true of women who were seen as being emotionally weak, rather than in need of pain relief.

Thankfully, the tide is slowly turning in favor of compassionate care for all pain patients. In October of 1997, California Governor Pete Wilson signed "The Pain Patients Bill of Rights," which provides patients with greater pain management alternatives and offers protection to physicians for prescribing high doses of medications as long as current triage procedures are followed.

In breaking news throughout the USA, the year 2001 brings hope to many ICer's who suffer from chronic pain. As of January 1, 2001, hospitals must now treat pain and new rules require that patients be informed of their right to assessment and treatment of their pain. Most importantly the new standards require that all patients' pain be measured regularly from the time they check in -- just as other vital signs are measured -- and proper pain relief begun or the hospitals risk losing their accreditation.

The American Chronic Pain Association has created a extensive list of patient rights that will be helpful for those patients who have difficultly asking for what they want, feel or deserve. This is a much briefer adaptation of those rights. You should never feel guilty insisting upon these rights. For a more detailed explanation of these rights, we encourage you to read the ACPA manual.

As a pain patient, you have:

• the right to act in a way that promotes your dignity and self respect.
• the right to be treated with respect.
• the right to make mistakes.
• the right to do less than you are humanly capable of doing.
• the right to change your mind.
• the right to ask for what you want
• the right to take time to slow down and think before you respond.
• the right to feel that you don't have to explain everything you do and think.
• the right to say "no" and not feel guilty.
• the right to ask for information.
• the right to feel good about yourself.
• the right to ask for help and assistance from your family and physicians.
• the right to disagree with others.
• the right to ask why? or why not?
• the right to be listened to and be taken seriously when expressing your feelings.