Communicating with Caregivers

On my first visit with a new doctor or therapist, I would always bring a typed copy of my personal medical history.

Here are the main points I included:
• Significant past medical history not related to pelvic pain
• The diagnosis of pelvic pain, including when my symptoms began, what these symptoms were, and the diagnostic tests performed
• Description of the current levels of pain (see the section of this appendix titled “Describing Pain”) and how the pain levels changed over time
• List of other symptoms. Of course, these will vary from person to person. Mine included urinary frequency and urgency, fecal urgency and dumping, and fatigue.
• How the condition impacted my life, such as sleep, basic needs, daily tasks, work, and recreation
• Treatments tried and current treatments
• Medications tried and current medications

To each follow-up visit with a caregiver, I brought notes on how my pain, symptoms, and activity status had changed since the last visit. I also wrote down any new instructions they gave me. That way, I didn’t have the pressure of remembering everything. After all, life was stressful enough!

To describe my pain to caregivers, I would specify the following:
• Pain Rating:
0–10 scale, using the following descriptors as a guide

Charts pg261

• Location:
Using words and/or pointing to the area
• Type of Pain:
For example, dull ache, sharp/shooting pain, or burning sensation
• Percent of the Day:
The percent of my waking time that I was in pain