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Trial By Error - New Doctors & Prescriptions

Over the years I have gone with my wife to many doctors' appointments, especially new doctors. I have found some doctors to be receptive, and seem to sincerely take an interest in my wife's needs. I have also encountered doctors who see my presence as a threat, or seem afraid that there have been problems with other doctors, and feel pressured. My wife, Gaye, has sometimes sensed attitudes and bad feelings that I have missed. Perhaps this is because I am a man, but I know my presence has usually helped her, particularly when seeing doctors for conditions other than IC.

When a doctor doesn't take a patient seriously, another person's presence is a powerful confirmation that there is a problem. Another person can also remember things that may be overlooked during a first appointment, and/or may be a good advocate on a second visit to a new doctor. Favorable first impressions of a doctor can be deceiving. A second visit may be an entirely different experience if a doctor's treatment has not worked.

The following is from our new book Patient to Patient: Managing Interstitial Cystitis and Overlapping Conditions, now available for sale in the ICN marketplace!

Dealing with New Doctors

When seeing a new doctor for a problem other than IC, patients don't know if the physician will be receptive to their IC needs. The doctor, after all, is interested in treating the condition for which he or she is being consulted. Bladder disease is not the doctor's main concern and a patient's knowledge about her or his body may be dismissed. Even when seeking treatment for an overlapping condition, such as fibromyalgia (FMS), a sympathetic specialist familiar with chronic pain patients may not understand or agree with IC pain management. As a matter of fact, doctors who specialize in newly researched diseases often have opinions as to the cause and treatment for conditions that support their theories and specialties.

Feeling challenged in the doctor's office is a normal experience for most women. According to Elizabeth Lee Vliet, M.D., author of Screaming To Be Heard: Hormonal Connections That Women Suspect and Doctors Ignore, "All of us as women often encounter a discounting and devaluing of our wisdom about our bodies and our health needs when we walk in the door of most medical offices." Sadly, this circumstance disempowers patients, causes emotional pain and sometimes results in physical pain. IC patients may become so discouraged by such negative experiences that they give up on treatments and medications that may help them. Some patients just settle for pain or other conditions that might be treatable, or relieved by the right doctor who will work with their needs.

Fortunately, there are doctors who evaluate the success of treatments for chronic pain patients differently than for the average population. This is so important to the many IC patients who are sensitive, do not respond quickly to treatments or cannot fit into standard treatment agendas. On occasion, doctors may choose not to treat sensitive patients in order to avoid hurting them. Or, patients may not get treatment when doctors who do not know how to treat them speak in a clinical manner to hide their ignorance. There are also some doctors who are afraid of being sued by patients who list many allergies and drug sensitivities. It is necessary to understand these dynamics to avoid useless, repeated visits to doctors who cannot help.

Trying a New Prescription

As with different foods, certain medications can trigger interstitial cystitis symptoms. The idea that different drugs can have such an effect on the bladder is hard for many doctors to accept. According to an early IC survey, a large percentage of IC patients suffer with sensitivities or severe allergic reactions to medications. Even so, there is little documentation and not much known about the side effects medications and their fillers can produce in IC patients.

Prescription drugs and their fillers, the inert ingredients in medications, go through the body in different ways. Both synthetic and natural medications can affect different parts of the central nervous system and cause allergic reactions. This is no surprise to the many IC patients who experience drug reactions and sensitivities in their bladders as well as in other areas of their bodies. The side effects to the central nervous system and the atypical reactions of many IC patients make trying a new drug difficult and often frightening.

Consulting a Physician's Desk Reference (available at many public libraries), or the Pharmacy Guide to Over-The-Counter and Natural Remedies, and/or becoming friendly with a pharmacist can be helpful and sometimes necessary in order to find information about drug fillers used in medications, documented drug interactions and side effects. A knowledgeable pharmacist can also direct the customer to a formulating or compounding pharmacy, which may be able to tailor a prescription to the individual's needs or offer natural sources which may be better tolerated than synthetic ones. A pharmacist can offer information on alternative options to oral medications, such as topical creams, ointments, skin patches and liquid medications (which often contain less additives).

The most valuable information, however, may come from another IC patient with similar symptoms. It was an IC patient who first alerted a doctor about what hurt her or his bladder. It was a good doctor who researched the reason and informed other patients and doctors.

When unsure of a newly prescribed medication, ask the pharmacist for only three pills to begin with. Explain to your doctor and your pharmacist that you will fill the whole prescription if the medication doesn't set off your IC symptoms or other reactions. If you are very sensitive to medications, you can ask your doctor if it's possible to begin with a quarter or half dose and gradually increase to full dosage. Let your doctor know that you understand the small amount is not enough to treat the condition, but that this is a necessary experiment for your bladder and other sensitivities. If you usually experience a cumulative effect, and don't experience IC symptoms until a few days or weeks after taking a new medication, inform your doctor that you may not know if you can tolerate the medication right away.

If You Have a Bad Reaction

Always let a doctor know if a drug has an adverse effect on your bladder or elsewhere. Although you may not want to deal with a doctor after a problem, you give your doctor the false impression that you improved with the prescribed treatment if you do not let him or her know otherwise. The doctor may also possibly make the same mistake with another IC patient.

It is helpful to report adverse drug reactions to the drug companies. Drug companies are not required to list the inactive ingredients in their drugs, but they do have to disclose the ingredients to individuals upon request. They also record adverse reactions.

The IC patient usually isn't a so called "good patient," and some doctors can make the IC patient feel indulgent and neurotic. When this occurs it's best to try to find another doctor. Although it takes time, energy and often courage to regroup before a new doctor search, the IC patient need not continue to be victimized by the disease and the wrong doctor.

- Andrew Sandler

About The Authors:
Gaye is an author and IC patient & support group leader who has been involved in IC work for years. In 1990 she published "Stretch Into a Better Shape" and produced a stretching and exercise video for IC patients in 1993. She is a specialist in Aston-Patterning movement and muscle re-education.

Andrew has over ten years of clinical and health care management position. He is currently the Administrator of Maison Hospitaliere, located in New Orleans. Andrew holds a Ph.D. in Special Education, a M.A. of Health Adminstration, M.A. of Clinical Psychology.

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