Thursday, October 4, 2012


We’ve all talked about how often we feel our doctors aren’t listening to us, and while we all agree there are doctors that are just not getting it I believe we as patients have a responsibility to make sure we communicate our needs to our doctors if we are to get the best care possible. Even the good doctors want a patient that can communicate clearly and concisely what is wrong and come prepared to discuss their questions and concerns.  I have always recommended getting as educated about your IC before you ever walk through the doors of your doctor’s office.  Go to the ICA website and read all you can; read the AUA Guidelines; print out things you feel are pertinent to what you want to discuss. Here are some tips that I think can help make the time with your doctor more productive.

#1 Write down questions in order of priority, keeping a pain or voiding diary, and be ready to talk about your medications or any treatments you’ve tried or are currently using. Take notes as you discuss your questions so when you get home you don’t forget what you talked about.

#2 I believe you should keep your own medical file at home with copies of lab reports and doctors' notes. These should be updated regularly and I suggest reviewing your file periodically to insure you’ve already discussed a treatment option or in case you want to re-visit one. I have copies of my entire medical file, but more importantly since I’ve been struggling with repeated UTI’s, I have made sure to get copies of each lab report each time I got one. This has come in handy several times when discussing how often this was happening and how different all of them were.


#3 BE HONEST with your doctor! Patients are sometimes afraid to disappoint a doctor if they have made little or no progress or are embarrassed about certain symptoms or about a failure to take medication as directed. You need to be forthcoming no matter what. Your doctor can’t help you if he doesn’t have all the information.


#4 Think of yourself as being a part of the solution. As I mentioned above, there is great benefit from educating yourself on the ins-and-outs of your condition and treatment options, as well as trying to find support in others who are fighting the same battle (I guess if you are reading this, then you are already following this tip). As I recently read in an article: "Doctors respect patients who take ownership of their own care, who show that they are actively engaged.” I find this to be my experience with ALL my doctors, not just my IC doctor!


#5 Don’t ever leave a doctor's practice in anger or haste. This can cause ill will and prevent cooperation in the future for medical care with another provider. Think long term and even if you’ve decided your current doctor isn’t the one for you, if you leave on polite and professional terms, it can prove helpful when you start working with your new doctor.


#6 For those who are always asking why their IC doctor won’t help them with their pain, most physicians have received minimal training in pain management. It’s important to find the right pain management doctor that is properly trained to help you. Most IC doctors, primary cares, urologists, gynecologists, etc. are not inclined to get involved in pain management because it’s not part of their own training. Your IC doctor may very well be sufficient for treating your pain to some extent, but should be giving you a referral to a Pain Management Specialist.

As a prominent pain doctor has written: “Currently in America, the vast majority of "pain management" practitioners have not completed accredited interventional pain fellowships. This is important because without proper training, there is no proof of one's knowledge, experience and proficiency in one's field. Even when a practitioner has passed medical school, completed an anesthesiology residency, completed an accredited interventional pain fellowship, and has passed all their board examination, there still can be variability in competency and outcomes.”

So, see if you can get a referral to a good pain doctor that understands chronic pelvic pain and IC. Do your research and find out what their qualifications are.  A few resources to help you might be the American Board of Pain Medicine; the American Pain Society; the American Pain Foundation, the American Academy of Pain Management, and the American Society of Interventional Pain Physicians.

I hope these tips are helpful. These are intended to help you become your own best advocate when it comes to your health care. My Mom taught me how to advocate for myself years ago and over the years, I have gotten much better at it; using these tips can help you talk with your doctor so that your time together is spent in the most productive way possible!


Here’s a great link to the ICA website page that I think is good for everyone, not just newly diagnosed IC patients. Check it out!


  1. Hello. Well, after years of suffering I was diagnosed with IC yesterday. I am feeling a little overwhelmed, but am glad to finally be getting some answers. My daughter is 11 and had recently begin to have the same type of bladder,stomach, and pelvic pain that I have had for so many years. She is the reason I decided to finally take steps to stop hiding and find out what may be wrong with me. I am learning so much through the website and through your blogs. Thank you so much

  2. I am sorry to hear of your IC diagnosis, but this finding the ICA site (and my blog too) you will find lots of support and helpful information from other IC patients that understand.

    One of the most important things I believe a patient can do is to become as educated about IC as you can and it seems you’ve started to do that. Read everything. Go to the ICA website and take the time to read through all the different sections. I think it’s key to read the New AUA Guidelines on the Diagnosis & Treatment of IC. Read them, highlight areas you think are important and use it as a tool to discuss with your care with your doctor.

    Let me know if you have any questions!