Validating Your Patient’s Experience of Chronic Pain

Erica, a 30-year-old woman who had never given birth, came to my office. I was the seventh doctor she had seen and her chart was filled with years of office and ER visits, as well as comments on her anxiety and tearfulness. There were mentions of “pain-seeking behavior.” She’d been treated with many courses of antibiotics for UTIs, but her urine cultures had all come back negative. Many abdominopelvic CT scans were normal. Transvaginal ultrasounds revealed a generally normal uterus and ovaries. I was trying to keep an open mind but braced myself for a difficult conversation.

“Hi, it’s so nice to meet you, and I’m so sorry all of this is happening to you. Tell me about what led you to me,” I said.

“I’m really hoping you can help me, I know something is wrong and everybody keeps telling me I just need to relax,” she said with a shaky voice. She looked like she was about to cry. She told me how her suprapubic area and pelvis hurt all the time and that her pain with periods was so bad she had to take sick days from work. She was afraid of losing her job. She was afraid her boyfriend was going to break up with her because it hurt too much to have sex. Her bowel movements were excruciating and she felt like she constantly had to urinate.

“I believe you,” I said. “What you’re going through is traumatic and your chronic pelvic pain is real. It’s not in your head. None of this is normal. I’m going to help you and we’ll be on this journey together.”

“Thank you for believing me, nobody else does, I feel like I am going insane,” she said.

Here are three things I keep in mind when supporting patients who are experiencing chronic pain:

1. Validate your patient’s experience of chronic pain.

Chronic pain syndromes, such as endometriosis, are real conditions with complex but increasingly understood pathophysiology. Reassuring a patient that you believe them and that you’re not going to abandon them is perhaps the most therapeutic thing you can do on their first visit.

2. Explain how chronic pain can affect mental health.

Chronic pain is in and of itself a disease. Living in constant pain can cause PTSD, anxiety, and depression. It’s important to verbalize that any person would feel anxious and depressed if they hurt all the time and that part of healing is having excellent mental healthcare in place to help deal with the stressors of the disease. This is a good time to gently ask about a history of sexual or physical assault.

3. Help create a multidisciplinary healthcare team for your patient.

Chronic pain requires multidisciplinary care. Yes, the female pelvic organs are where the pain is felt, but chronic pain is now understood to be a disease of central neural sensitization and complex neuro-immune-endocrine functions that contribute to pain flares. The afferent nerves of the female pelvis converge at the same spinal cord levels and have a great deal of crosstalk between bladder, bowel, and uterus. Referral to a team that includes pelvic floor physical therapy, physiatry, gastroenterology, pain psychology/psychiatry as well as gynecologic specialists above will lead to a better health outcome. Find and connect your patient with excellent specialists to join their healthcare team.

This piece expresses the views solely of the author. It does not represent the views of any organization, including Johns Hopkins Medicine.