The women had heard that IVF would be hard, but many of them were in shock at how painful the procedure was.
“I felt everything,” one woman said. “I was sweating profusely and telling them I was just in too much pain — they had to stop.”
Their stories were featured on “The Retrievals,” a new podcast from Serial Productions and The New York Times. It chronicles what happened when about 200 women at a Yale fertility clinic underwent egg retrievals with insufficient pain relief because a nurse was stealing their pain medication, fentanyl, from the clinic and replacing it with saline. The fourth episode of the five-part series will be posted on Thursday.
What these women experienced was unusual, but pain mismanagement at the hands of providers is pervasive.
Most health care providers do not have formal training in pain management, said Dr. Shravani Durbhakula, a pain physician and anesthesiologist at Vanderbilt University Medical Center in Nashville. “Pain medicine is absolutely an art,” she said.
According to the National Academy of Medicine, fewer than half of patients with postoperative pain say that they have received adequate pain relief. In addition, when patients report pain, there are racial, socioeconomic and gender disparities in how they are treated.
If you feel as though your pain is being ignored before, during or after a procedure, what do you do? Four physicians who specialize in treating pain shared their wisdom.
Trust your gut.
If something feels off, it usually is.
You may wonder, as many of the women in The Retrievals did, whether the amount of pain you’re experiencing is “normal.”
One of the first clues is your vital signs. If your heart rate and blood pressure are rising during a procedure, for example, that should be a big sign to both the doctor and yourself that the pain you’re experiencing is out of the ordinary.
Speak up if you’re uncomfortable, said Dr. Tina Doshi, the director of inpatient chronic pain services at Johns Hopkins Hospital in Baltimore.
Doctors can, and should, “adjust the treatment plan accordingly, even if it’s on the fly,” she added.
And if your doctor doesn’t think a specific drug is appropriate — for example, an opioid — ask for an explanation of when your doctor would use it.
Then ask what your current options are, Dr. Durbhakula suggested — and find out what happens if those options don’t work.
Talk about pain ahead of your procedure.
If you’re having a procedure where you may feel discomfort afterward, the physician should have a frank conversation with you about what the experience will be like, the level of discomfort you may have and your recovery timeline.
Even if your doctor doesn’t explicitly address these things, “ask as many questions as it requires to get the clarity that you need to feel comfortable,” Dr. Durbhakula said.
Finally, if you don’t do well with certain procedures (for example, dental work), have a history of needing more anesthetic or difficulty with pain management, then be upfront about it, said Dr. Natalie Strand, an associate professor of pain medicine and the vice chair of pain research at Mayo Clinic in Arizona.
“It doesn’t make you weak,” she said. “That’s going to help your doctor make a pain plan for you.”
Tell it like it is.
Pain is subjective. When speaking with your doctor, describe your experience as honestly as you can, “without self-judgment, fear or embarrassment,” Dr. Strand said.
You might say, My back spasms are keeping me awake at night, or, My pain is interfering with my ability to do the activities that I enjoy, like swimming.
Remember that your assessment is not wrong or inaccurate, even if someone you know had a less painful experience. “Different people have different sensitivities to the same painful stimuli,” Dr. Durbhakula said.
Put the onus back on the medical professional to figure it out, the experts said.
Bring a support person.
If you feel that you and your doctor aren’t communicating well, schedule an in-person follow-up appointment and bring a relative or friend to share their own observations and help you clarify your thoughts.
During this visit, it is important to talk about pain that is preventing you from living your life, said Dr. Johnathan H. Goree, the director of the chronic pain division at University of Arkansas for Medical Sciences.
Sometimes, Dr. Goree said, he will ask the support person for insights about the patient “and get information about how they’re sleeping, how they’re walking, how they’re getting around the house — that may contribute to my decisions about pain.”
Get a second opinion.
If you still feel as though you are being dismissed, Dr. Doshi recommended saying something like this: “I don’t think we’re seeing eye to eye here. Is there someone else I can speak to?”
Many health care centers have a patient advocacy office, whose job it is to investigate your case and take your complaint seriously, the experts said.
Finally, try to get a second opinion from a health care provider at a different practice.
“Pain reported is pain that needs to be addressed,” Dr. Strand said. “Be persistent.”
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