(Editors Note – This is a reprint of an editorial that I did in our magazine, the IC Optimist. I chose to reprint it after a phone call from a young woman who called my office outraged that her doctor had cut off her pain medication. She asked me if she was taking a lot of medication (30 mg of codeine each day) and I responded “Yes, that’s A LOT.” But as we talked about her pain, it was clearly originating from her bladder wall. I was stunned to discover that she had refused to give up coffee despite experiencing agonizing pain. Her story is almost identical to the one I share below. Change is a must for patients struggling with IC and pelvic pain. Refusing to change could lead to days, perhaps weeks, months or even years of unnecessary suffering. Think about it. – Jill O.)

If Nothing Ever Changed, There’d Be No Butterflies

Why is it that when things aren’t going well, we dig in and refuse to try simple changes? Isn’t the fact that things aren’t going well a sign that you might need to try something new? Last Spring, a patient that I had known for several years called my office sobbing in pain. She had no idea what to do next and felt that no therapies had ever worked for her. We spent some time trying to determine what was triggering her pain. Her symptoms were strongly suggestive of bladder wall irritation. When I asked her if she was following the diet, she emphatically said “yes.” Her husband, however, was also on the phone and he said “No. She has never followed the diet. She drinks a pot of coffee a day.” It was actually worse than that. She also drank several diet cokes and ate chocolate candy EVERY DAY.blog-nothingchangebutterfly2

As you can well imagine, she burst into tears, furious that the truth had been revealed. “Why are you taking away the things that give me great joy? I don’t want to stop coffee.” I asked her “Didn’t every doctor you see tell you that coffee was bad for IC?” She said “yes.” I replied “Did your IC support group leader tell you about coffee?” “Yes!” she cried.

With growing frustration I asked “Didn’t I tell you about the IC diet five years ago and how coffee and soda was so harmful?” She quietly said “yes” and cried for several minutes on the phone murmuring about how it would destroy her day if she couldn’t have her coffee.

I had to try to explain it in a different way. I asked “Would you pour coffee or soda on an open wound on your hand?” She said “no.” I asked “Don’t you have Hunner’s Ulcers?” She said “yes.” I countered “Aren’t those wounds in your bladder?” She said “yes.” I asked “Why are you pouring coffee and soda on wounds in your bladder?” She didn’t answer. Then, with the big guns blazing, I asked “Do you realize that you’ve sabotaged almost every treatment you’ve tried because you were drinking so much coffee?”

There is a happy ending here. Three months later, she called me back to report that her bladder pain was steadily improving with no daily coffees or sodas. She had finally accepted that she had to change her diet and life. She had also lost weight and was feeling much more energetic.

“It is not the strongest of the species that survive, nor the most intelligent, but the one most responsive to change.” – Author unknown

Asking people to change and/or leave their comfort zone almost always creates tension, fear and anger. The question is why. In some cases, it’s about holding on to our youth. “I’ve always been able to drink coffee and soda” is a mantra I’ve heard hundreds of times in the past seventeen years. I usually respond that “You’re older now. Your body isn’t as resilient as it used to be and it’s very normal for people to become more sensitive to foods as they get older.” Then, of course, you have some people who are in total denial and often struggling with addictions to caffeine, sugar or nicotine. Yet, when you have IC, changing your diet is a must.

Change is also worth considering in your medical care. If, after a reasonable period of time, you determine that a therapy isn’t working for you, shouldn’t you consider changing that therapy to something else? I once talked with a woman who had spent more than $30,000 on Elmiron. I asked her if it helped her. She said “no.” I asked her why she kept taking it and spending that money if it wasn’t helping. She said that she thought she was supposed to. If you haven’t made progress with your symptoms, it’s important that you talk with your doctor and consider other treatment options.

Similarly, if you feel that your physician has exhausted their knowledge and experience levels and doesn’t know what else to offer you, you should consider looking for another physician who might have new options for you to try. IC clinical trial or research centers, such as the new Beaumont Women’s Urology Center, provide world class care with a medical team thoroughly knowledgeable about IC and the latest treatment strategies. You can find a list of IC specialists on our website.

Sometimes there can be change that, in hindsight, you wonder “Why didn’t I think of that?” If you struggle with bladder symptoms while you’re in a car or commuting to work, consider trying cars with a smoother, less bouncy suspension. Sometimes swapping cars with your spouse is the perfect solution, even if that means you’re driving the family van!

Intimacy and sex requires an open, creative mind when you have interstitial cystitis or any pelvic pain condition. You may have been raised to believe that one position is the only acceptable way to have sex. Not true. Someone with a low back injury may simply not be able to tolerate certain positions while other positions are much more comfortable. You have the same option. Be playful and creative. Try new things. If something is painful or hurts, change and do something else instead. You can read much more about intimacy in the ICN Romance and Intimacy Center on our website.

“Continuity gives us roots; change gives us branches, letting us stretch and grow and reach new heights.” – Pauline R. Kezer

Living with IC requires change. Yes, there will be times when it is hard and requires courage to accept. Yes, there will be times when you want to fight change and cling to what you know. Inevitably, there will also come a time when you have no choice but to change. Embrace change! Embrace your butterfly!

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Originally printed as an editorial in the IC Optimist Magazine, Spring 2010