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farielloEditors Note – Most urology clinics have a nurse practitioner who works on the front line with IC patients who are struggling with flares and need treatment. The best ones are those who are kind, compassionate and interested in their patients. Jennifer Yonaitis Fariello MSN, CRNP  has been a veritable angel to thousands of patients on the East Coast. This Spring, she joined Academic Urology at Bryn  Mawr to launch the new Center for Pelvic Pain. This is a fabulous new resource for men and women pelvic disorders in the greater Philadelphia area.

We asked Jennifer to share some tips for patients who are struggling to find care and/or work with their doctors.[break] [hr] [break]

Got Pelvic Pain? Do’s & Don’ts For Working With Your Care Provider

by Jennifer Yonaitis Fariello, MSN, CRNP

Pelvic pain patients are challenging but also very encouraging.

likeitBE PREPARED WITH YOUR MEDICAL RECORDS & A LIST OF QUESTIONS: To provide you the best care, your doctors need your health information.  Patients with IC/BPS and CPP often have many records that need to be reviewed. Please bring all your records on your first visit!  It can be helpful to keep all of your records in a binder, especially test results and treatments.

dislikeitDON’T BRING A LONG LIST OF QUESTIONS: Bring a shorter list of meaningful questions! Every appointment has a  limited period of time and as much as we’d like to answer all of your questions, we often just can’t. Motivated patients take the time to do some research ahead of their appointments. If  you’re not sure about your treatment options or don’t know what the pelvic floor muscles are, take a moment to read about them first. Educated patients  can have better discussions with their doctors and ask better questions. I encourage patients to make use of various books and websites that can help, such as: The IC Survival Guide (by Robert Moldwin), Heal Pelvic Pain (by Amy Stein) and the IC Network website!

likeitBE SELF CONFIDENT, NOT ANGRY: It’s not your fault that you’re struggling with pelvic pain, nor should you let critics negatively affect your self esteem. Patients who are self-confident stand up for themselves calmly and rationally. Rather than reacting with anger when someone says “you don’t look sick,” they use their education and knowledge to instruct family members, friends and colleagues who simply don’t understand what IC, prostatitis or pelvic pain is.

dislikeitNEGATIVITY: All clinicians working with pelvic pain want our patients to achieve maximum wellness and give our patients realistic expectations. Unfortunately, many patients walk through the door with a great deal of negativity, perhaps baggage from previous doctor or treatment experiences. As much as we try to turn the tide, many patients remain unhappy and often proceed with any therapy with a lack of enthusiasm ultimately resulting in treatment failure. It’s so important for patients to understand that it’s often an uphill process to get better…and yes, there will be setbacks along the way. They need to go forward with optimism and the belief that they are going to improve.

likeitSELF-HELP & EMPOWERMENT: Patients do self-help every day, from diet to home physical therapy programs, meditation/relaxation and stress reduction. They understand that they have power and control over their bodies and pain responses more than they ever realized in the past. The most effective patients are those who no longer rely on their doctor or nurse practitioner as a “crutch” and take wellness into their own hands by diving into self-help strategies.

dislikeitCONTINUING THE FAILED RELATIONSHIP: In some instances, it’s clear that a patient-clinician relationship is not going to work. There may be differences in personalities, philosophies, methodologies, etc. Simply put, they just don’t “click”. In these instances, it is in the best interest of the patient to not waste any more time and find a new provider. Patients should save themselves the frustration of being unhappy, disgruntled and most importantly, not feeling better.

likeitFAMILY INVOLVEMENT – We appreciate when significant others and/or family members join the patients at their visits and often they are helpful at adding additional pieces of information. It can be a comfort for the patient and be a second set of ears when treatment and pain strategies are discussed. On the other hand, we frequently encounter the significant other who does all the talking. This is counterproductive.  As clinicians, we want to know how the patient feels directly from the patient’s mouth. Please let the patient speak for themselves.