If you’re like me, I bet you’ve asked yourself the following questions a million times since you were diagnosed:
What exactly is IC?
How come no one seems to know what causes IC?
Why can’t anyone help me?
Why don’t they have a cure by now?
Why is this happening to me?
Why does nothing seem to make my bladder feel better?
Why am I sometimes okay and sometimes really, really, really NOT okay?
Will this ever end?
The exact answers to all of these questions still haven’t been found. But every year we get closer. There are a lot of very smart people trying to solve the mystery of interstitial cystitis.
One theme that I have noticed in the most recently published studies is that scientists are beginning to categorize IC into different types.
This makes sense. We all know that what works for one person won’t always work for another.
That’s a truth about IC that we fully embrace on TreatIC…and that’s why we have put everything we know about home treatments on the site. Even if it didn’t work for us, it could still be the thing that finally works for you.
Here’s a roundup of the latest research studies on IC. Take a look and see if any of the “types of Interstitial Cystitis” resonates with you.
1. The International Continence Society 2017 Workshop: Phenotyping BPS/IC for Clinical Success
If you go to this workshop document (which includes the slides), you can also click through to all the topics that were presented at the 2017 conference. Here’s the video of part of the actual presentation where they point to phenotyping IC is the key to finding better treatments. It’s short but excellent. Skip the first 2 minutes though.
2. Jill Osborn on categories of Interstitial Cystitis:
3.Current best practice management of interstitial cystitis/bladder pain syndrome (March 2018)
This article does a great job breaking down how treatments should be based on the category of IC. It can help guide you in your personal choices on the things you want to try first.
4. From bladder to systemic syndrome: concept and treatment evolution of interstitial cystitis
This review goes into detail about the importance of developing phenotypes in order to treat both the bladder and non-bladder causes of IC.
These 4 resources will give you a solid understanding of where IC research is heading and how scientists are beginning to think about IC (more than one cause means more than one type which means certain treatments are more appropriate for certain people).
Your job is to keep taking care of yourself the best that you can. Learn everything you can about your own IC since everyone’s experience is so different. Pay close attention to the patterns that you notice.
Keeping a symptom journal can be helpful in figuring out what phenotype you think you may have. Think about more than your bladder…think about your whole body, as well as how you are feeling mentally and emotionally. After all, your bladder exists in a system, so it shouldn’t be surprising that it is influenced by things other than urine!
What did you do the day before a flare? What else was going on? GI issues? Your period? High pollen counts? Sex? Stress? Worsening allergies or asthma symptoms at the same time? Rashes?
And don’t forget to track those great days too, the ones where you almost feel “normal” again. What was going on? What did you do or not do the day before? How was the rest of your body feeling?
All these things may hold clues to the cause of your IC and what “type” you may have. Discuss the results of your tracking with your doctor and get their input on what they think.
Thanks for reading. If you come across any interesting information about types of IC, please post it in the comments so everyone can benefit.
Think you know your type of IC and want to read more? Explore other articles on TreatIC:
I think I have pelvic floor dysfunction
I think I have a nerve or muscle problems
I think my bladder lining is screwed up
I think I have bladder inflammation
I think I have IBS and IC
I think I have an allergy issue (mast cells)
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