The Elephant in the Refrigerator

Question: How do you tell if there has been an elephant in the refrigerator?
Answer: There are footprints in the butter.

How do you tell if he is still there?
You can't get the refrigerator door to close.

For many patients, chronic pain is like an elephant in the refrigerator. You know he is there. You can see (and feel) the damage that is caused. No one knows what to do about it, and no one wants to talk about it.

Chronic pain is a difficult thing for health care professionals to treat. Even those of us that dedicate our practice to helping people with these conditions often find the situation frustrating. For patients that haven't found the physician or team that really "gets them" this journey can be very confusing, and lonely. Pelvic pain conditions can be especially difficult because so few of the specialist trained to treat these organs (gynecologist and urologists) are knowledgeable about the pain inducing syndromes; such as IC, vulvodynia, and pelvic floor dysfunction. There are areas of the country where finding a professional that is competent in treating these conditions is nearly impossible, unless you are willing, and able to travel.

The good news is that there is a lot of information available to health-care professionals that are willing to learn from it. Unfortunately, as a patient, you may be the only person alerting your doctor to the need to become educated.

The average interstitial cystitis patient seeks treatment for 4.2 years, from 4.9 doctors before getting a diagnosis. Vulvodynia patients have a similar struggle. Most of us don't have the resources, time, or inclination to doctor shop; however, if you have a painful condition that is not resolving, and your doctor does not seem to be looking at new options, it is time to have a very serious discussion.

Talk about the elephant!

This is where the team approach to healthcare comes in. You are the captain of your team. If your doctor has ruled out controllable infections and the big scary things like cancer, and still hasn't found a cause for your condition, discuss possibilities. Do you need to see a specialist? A different specialist? A third specialist?

Once you have a diagnosis - you have decisions to make. Can your current team of professionals help you? If they are unfamiliar with the condition, are they willing to learn? The Interstitial Cystitis Association, National Vulvadynia Association, and International Pelvic Pain Society (see side-bar for web-sites) all have excellent physician information services. Don't write off your doctor and/or therapist if they are unfamiliar with the condition, especially if you are unable to locate an available expert, as long as they are willing to work with you and learn. Even the experts don't have all of the answers, and it is the ability to listen to the patient, and adjust treatment accordingly that brings about the best outcomes.

When talking to your doctor or other professional:

• Be informed. Bring information to share. Web addresses, articles, and books that you are willing to leave with them. They may only skim the information, but they will have it as a reference.
• Be prepared. Write your questions down. Keeping a list of questions that you can add to over several days works better than jotting things down in the waiting room.
• Be patient. Your doctor has a busy practice. If you bombard him with a million questions and info when he doesn't expect it, and has a full waiting room, the conversation is destined to be disappointing at best. Let the office know ahead of time you have a lot of questions, and plan to be awhile
• Be Firm. Your doctor works for you. If an open, compassionate dialogue is not possible, find a new doctor. There is an elephant in your refrigerator, and it takes communication to send it packing.