Saturday, July 13, 2013


As many of us know, participating in online support, such as the excellent ICA Facebook page, can provide us all with wonderful sources of encouragement, support and information sharing. This is a wonderful thing and one of the "good" things that the Internet has brought us.

The challenge about this arises when people share their experiences and disagreements about treatments come up. Often these disagreements can create a very contentious situation and arguments can ensue. This bothers me.

I believe it is very important that we all share our experiences, positive and negative, in our personal journeys with IC. What worries me is when people talk in "absolutes". When it comes to IC, nothing is absolute. If a treatment failed that you tried, gave you negative side effects that doesn't make that treatment invaluable or not worth trying for others. As we all know too well, no two IC patients are alike and none of us responds the same way to any given treatment. Heck, that can be said regardless of the illness. No two people respond to medical treatments the same way regardless of what it is. This must be taken into consideration when discussing options with your doctor and listening to the experiences of others.

I think it's very important to present pros and cons when it comes to our personal experiences, but caution should be used when relating your personal experience with a treatment that very well might work for someone else were it not for some very scary story someone told about a bad experience. I understand the need to feel as though we must warn others that they might experience the same thing. But I believe it's prudent to tell others what our experience was without scaring them to death.

I have had IC for 12 years. I have 2 InterStim and treat my pain with bladder instillations. I can't take any oral pain medications whatsoever because I get severe side effects from them. That said, I would never tell another patient they are not worth trying, but to use caution, talk about the pros and cons of them with their doctor and be aware that possible side effects can occur. 

I believe this is the approach that should be used when we talk about our experiences with treatments with which we have had success or failure. 

I think it is a disservice to those in the IC community to denigrate a treatment to the point of scaring someone away from trying what is a legitimate therapy option, just as much as it is a disservice to overstate what a therapy is capable of doing. 

The point I want to make is this. Take personal responsibility for your own health care plan. Listen to the information others share with you, do your own research, bring notes to discuss with your doctor. ASK QUESTIONS when you are with your doctor! This is how we make informed decisions about what treatment options we want to try. 

Because what works for me, or anyone else, may not work for you. And what works for you, or anyone else, may not work for me. We are all different and no two IC patients are alike!

If you want excellent resources to help you research treatment options, go to the ICA website and spend time drilling down and reading everything on there. It is filled with current and excellent information on IC. Also, one resource I believe every single IC patient should have at their finger tips is the AUA Guidelines on the Diagnosis & Treatment of IC. Read them, print them out, go over them and use them as a tool to discuss your treatment options with your doctor. Don't ever hesitate to get a second opinion or disagree with your doctor! Learn to be your own best advocate. This is what will get you the best care possible and help you find the right treatments for YOU!

Another excellent resource for excellent medical information is the ICA's YouTube Channel. Go there and take the time to watch the videos; there's a lot to learn there!

Also, if you have been unable to watch the online sessions from the Patient Forum that was held recently in Philadelphia, I encourage you to do so. Lots of good information can be found watching those videos as well!

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