Monday, October 28, 2013


OK, so you've been told you have IC. Now what? Well, hopefully you have a knowledgeable doctor that can work with you to find the best treatments that help you with your symptoms. But I thought I'd share my Top 10 list of things about IC for Beginners I believe you should know!

  1. Diet: This is an important one. Read everything you can about IC & Diet and how to go about doing an elimination diet to help you figure out your personal trigger foods. Steer clear right away of all caffeine, soda, artificial sweeteners, anything Cranberry, citric acid, coffee, wine. At the bottom of this post will be a link to the ICA website where you can read more about this. 
  2. Intimacy: This is a tough one. Intimacy is a major issue and challenge for a lot of couples where one of the partners has IC. Below is a link to the ICA website with some good information on intimacy issues.  I think there are some excellent tips to be found here. Also, a good physical therapist that is knowledgeable about IC and chronic pelvic pain should be able to help you with this issue. But if you can also find a sexual medicine specialist that is a good option as well. Just in case, I’ll post the link to the ICA website on this subject – maybe you’ll find a few tips to help.  I can also recommend a good book that was written by a former member of my support group and her husband. It’s called “Please Understand: The Interstitial Cystitis Guide For Partners” written by Gaye and Andy Sandler. You can buy it on
  3. Ice or Heat: If you are having pelvic/bladder pain, or urethral pain, vulvar/vaginal pain then Ice or Heat can be real life savers. Each of us is different so find which of these works for you. I personally love heat and my heating pad. But I know IC patients who love Ice even taking Ice packs with them on car trips or wherever they go. The same can often be done with a heating pad. Hot baths can be great as well. Some people like them with Epsom salt, others want nothing but water so use caution when adding anything to your bath. Some are easily set off by soaps with scents added so know what you can and cannot tolerate. I love a nice hot bath or even a shower if you don't have a soaking tub.
  4. Baking Soda:  A glass of water with a teaspoon of baking soda has been reported to help reduce burning and flare symptoms. The ICA website page on Flare Busters is a great resource 
  5. Drink Your Water: So many newly diagnosed IC patients have a tendency to stop drinking altogether. This is the worst thing you could do!  You need to drink enough water to keep your urine diluted because concentrated urine can increase your pain. Not drinking enough water can also cause dehydration, which puts you at higher risk for constipation, urinary tract infections, and other health problems. Eight glasses a day of water is recommended. However, talk with your doctor about how much water you need to drink. Some IC experts recommend keeping a bottle of water with you and taking a sip every 5 to 10 minutes.
  6. Get Educated: The best thing any IC patient can do is to read everything you can on IC and related conditions. Don't hesitate to write down questions to bring in to discuss with your doctor or print out things you have read to ask about so you don't forget to ask something you wanted to cover. This will also help you make the most of your time with your doctor. Take notes during your appointment too. You want to remember everything you talked about during your visit, so taking notes is an important tool to help you.
  7. If It Works, Don't Stop: If you find a treatment plan - whatever that may be - if it's working, don't stop! Some patients think that if they feel better they can stop whatever treatment has gotten them there. Don't ever stop your treatment plan without first discussing it with your doctor. But if it's helping, chances are if you stop, you'll wind up back at where you were when you started so as they say - if ain't broken, don't fix it!
  8. Find a Support Group: Look for a local Support Group in your area that you can join. There is a listing on the ICA website and I'll include a link below with the other links. See if there is one in your area or close enough for you to join. This can be a tremendous source of support, encouragement and information. If there isn't one in your area, consider starting one yourself. It's not hard at all and again, the ICA can help and they have a FREE Toolkit to help you get started. Often focusing on doing something positive like this can make all the difference in learning to cope with our IC.
  9. Become an ICA Member:  If you can afford it, become a member of the ICA! The ICA is the ONLY nonprofit association dedicated solely to improving the quality of health care and lives of people living with IC! If you can't afford to join yourself, ask friends and family to pitch in and give you a membership as gift instead of presents for your birthday, holidays or anniversary. Save your change for a year and see if you've got the $45 it takes to join! Help support the IC Community by supporting the ICA!
  10. ICHope Module: I've Blogged about this great new tool on the website. This new FREE tool for IC patients that we can use ourselves at home to find ways of learning to cope and strategies for dealing with our IC and pain is something that I think every single IC patient can benefit from! Link below!
These are my Top 10 things I believe every Newly Diagnosed IC patient should know about; heck all IC patients could find something here that I believe is useful. Below are links I referenced in the Top 10. I hope you will take some time to check them all out, read up and become your own best IC Advocate!


  1. Following a link above I have just spent the last several hours watching webcasts of the doctors who presented at the 2013 ICA Patient Forum. I learned a lot. Thank you so much for being an advocate - sharing resources. I shared the information thru FB re these webcasts and encouraged others to share. Best wishes with your upcoming challenges. Lin

    1. So glad you found my Blog and that you thought it was helpful!