Having Interstitial Cystitis (IC) is a drag! Any day can range from inconvenient to almost unbearable. But there is a lot you can do to help manage your symptoms. With a little trial and error, you can significantly improve the quality of your life. Here’s 10 tips for managing Interstitial Cystitis.

Take control of managing Interstitial Cystitis

Urologist talking about Interstitial Cystitis

  • 1. Take an active role in your care- doctors, pelvic floor therapists, pharmacists, counselors, family and friends can all help- but you have to be the coordinator. It can take time to find the right members for your team. Look for practitioners that listen to your input, and treats you like a partner in your care.
  • 2. Drink plenty of water- yes I said it..again. But you’d be shocked at how many people avoid water due to bladder pain and frequent urination. If you avoid water, your urine becomes more concentrated, and can further irritate your bladder.
  • 3. If you want to do it (whatever it is)- find the path. No matter what you want in life, there is a path. You might have to make some modifications, you might need to consult with a member on your healthcare team. You might have to start where you are now…and work up to it. But, there is a path.

Heather’s Story- I know of a woman that has IC that decided she wanted to get more exercise, and Run. At first, she started by walking. She could barely get around the block. But she kept working at it. Not pushing herself too hard. Just a little at a time. And she improved. That was years ago. But this year she ran in a 100 mile event. Yes, that’ right! 100 miles. She said that she really like this event because it was 5 laps around a 20 mile track. And the track had lots of stops where she could…if she needed to…go to the bathroom. Not that she did that a lot. But just knowing she could was a comfort…see? Modifications. (Wanna know more about this woman? She does research for IC now-find out more in her in this interview with Nicole Cozean here)

 

Be willing to experiment

  • 4. Try a heating pad-to reduce muscle spasms and discomfort. use for about 20 minutes, then remove and see how you feel.
  • 5. Look after your sexual health- you have a right to a healthy sex life. Whether that is with a partner, or solo. Traditional, or non-traditional. Talk with your medial team- counselors and Pelvic Floor PTs can help a lot. If you have a partner- communication is key. Talk openly with them about your needs. Be creative.

You don’t have to do it alone

  • 6. Find a support Group- but watch out for groups that focus mostly on the downside and griping. Negativity is not your friend. Look for mutual support and friendly suggestions. Stories of encouragement. Humor. Take things with a grain of salt. Not everything works for everyone.
  • 7. Look for reliable sources of information- consider the source. Who is providing the information? What message are they conveying? And Why?
  • 8. Clothing that falls loosely is often more comfortable, and will reduce triggers. Avoid Tight waistbands and underwear.
  • 9. You do not have to choose between traditional medicine and holistic medicine. Choose both! Choose it all. Everything you try might knock the intensity of symptoms down a notch or two. Try 10 things (Not all at the same time, you’ll never know what works) …if 6 of them work you are on your way to getting your life back.

Keep track of what you have tried

  • 10.Document what you do. Managing interstitial cystitis is a journey. Track what medications you have tried, what foods seem to work- and what has no effect. If you had to move next year, would you remember what medicine you tried already, that didn’t work? Which pasta sauce seemed to send you into a flare up? What aroma therapy scent worked the best? It doesn’t have to be super involved. Make a folder. Make a note and date it. Maybe, if you are kind of type A like me, divide it into medical, diet, self care, sexual, other…..just an option.

These are just general tips to help you get a handle on managing your IC symptoms. You can do this. And have a great life.

I am a pelvic floor physical therapist with a clinic in Winston Salem NC. I treat women and men with Interstitial Cystitis and Bladder Pain Syndrome, to help them live active full lives. Relief Is Possible.

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Other related information you might find helpful

The Interstitial Cystitis Association has great information

I highly recommend the book The Interstitial Cystitis Solution by Nicole Cozean

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Finding Hope for people suffering from IC/PBS

The Journey of Chronic Pelvic Pain