What’s Your Pain Level?

What’s Your Pain Level?

We’ve all heard it. We show up at a doctor’s appointment and we are asked, “What is your pain level on a scale from 0 to 10?” We may also be asked questions like “When does it hurt?”, “What makes it better or worse?”, “Is it a stabbing pain or a burning pain?”, “Is it sharp or dull?”, and the list of questions goes on.

If you’re like me, sometimes, you have difficulty answering these questions as they pertain to your endometriosis and/or related complications. Sometimes, if I’m not feeling the pain in the moment, I can’t quite remember if it is more of a burning or a stabbing. I also have a hard time with putting a number on it, and I get nervous that I’m not giving the right number. What is their threshold for believing me or wanting to help me?

Dismissing pain

After all, there are gender and racial/ethnic disparities in how doctors respond to pain. Women’s, as well as racial/ethnic minorities’, pain complaints are more likely to be dismissed, which makes it difficult to receive effective and fair treatment.1 Putting a number on pain is also difficult because when someone is experiencing chronic pain, their perception of the 0 to 10 scale changes. As we live with pain, we are forced to adapt, which means we may report it lower on the scale over time, but that’s only because we are changing our lives to accommodate it. This doesn’t necessarily mean we are better or don’t need more help.

The challenge of measuring pain

The fact is, pain is difficult to measure. There are self-report, behavioral, and physical measures of pain, but they all have their strengths and weaknesses. Part of the reason is because pain is subjective, and there are many factors that affect our experiences. For example, if someone is distracted or in a good mood, they report lower levels of pain than if they are inwardly focused and in a negative mood.2 Finally, doctors may not ask the right questions, or establish the trusting relationship needed for patients to divulge the necessary information.

What the research says

National Public Radio recently highlighted some research that is being conducted by Markman and colleagues at the University of Rochester, about how clinicians measure pain, and the impact pain measures have on pain treatment.3 As it turns out, what we are asked and what we say about our pain matters. They argued that patients can receive more effective treatment if they can be very descriptive about their pain. Words are needed in addition to the numbers.

The practitioners Neighmond interviewed stressed the importance of describing the history of your pain, the extent to which it interferes with your daily life, the factors that make it better or worse throughout the day, and how your pain compares to the worst pain you ever experienced.3

What can I do?

Of course, all of this information may be difficult to remember and describe in the moment. It can be helpful to take some time before an appointment (or even now!) to write out your descriptions in a journal, and carry that journal with you to appointments. You can also use this journal to make notes during your appointment, because we all know how difficult it is sometimes, to remember everything the doctor said or recommended. Keeping all your endometriosis information in one place, may help you receive better treatment over time. You could even use your journal as a way to cope with your endometriosis. It can be cathartic to write out how we are feeling, and we can also use it as an opportunity to make note of the times we are feeling relief and the positive things we are doing to cope with our pain.

Do you use a journal to keep track of health-related information? If so, how has it helped you?

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Endometriosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.
View References
  1. Institute of Medicine. (2011). Relieving pain in America: A blueprint for transforming prevention, care, education, and research. Washington, D.C.: The National Academic Press. Retrieved from: https://www.ncbi.nlm.nih.gov/books/NBK91497/pdf/Bookshelf_NBK91497.pdf
  2. Straub, R. O. (2017). Health psychology, 5th edition. New York: Worth.
  3. Neighmond, P. (2018). Words matter when talking about pain with your doctor. National Public Radio. Retrieved from: https://www.npr.org/sections/health-shots/2018/07/23/626202281/words-matter-when-talking-about-pain-with-your-doctor?

Comments

View Comments (3)
  • Endo Warrior moderator
    2 weeks ago

    Before I had my appointment with the endometriosis specialist who ended up carrying out my hysterectomy, I kept a little notebook where I logged my pain and other symptoms of endometriosis. I needed to have that ammunition in order to get the best care. And it worked, as my specialist agreed to do the hysterectomy.

    I do agree that grading pain on a 1-10 scale is not helpful at all. As endometriosis sufferers, our tolerance to pain is quite high; if it weren’t, we wouldn’t be able to get through the day. But that is never factored in when we see medical professionals.

    The fact that women’s pain is taken less seriously has been proven in a recent study (the study focused on boy’s pain vs girl’s pain in pediatric care, but that’s where it starts). https://academic.oup.com/jpepsy/advance-article-abstract/doi/10.1093/jpepsy/jsy104/5273626 Hopefully this study will spur medical professionals on to change how they treat girl’s (and women’s) pain.

    Christina (team member)

  • Jessie Madrigal moderator
    3 weeks ago

    I have used a journal on and off, and also one of those apps that let you track your cycle and your symptoms. It becomes very useful when talking to doctors, so you can pin-point to the symptoms that are really disrupting your life.

    I also agree that using numbers as a way to measure pain is not very useful. I have always been confused about it. I would give myself an 8, because the pain had got really bad, but not higher because “what if another flare-up results to be worse than the last one?”. During my last period it felt as if my pelvis and legs were being ripped apart from my body. That’s as accurate as I can be 🙂 This is a great article, lots of food for thought. – Jessie (team member)

  • Jessica Tavlaris moderator author
    3 weeks ago

    Thank you so much for your feedback and for sharing your experiences! Glad I’m not the only one who has to think twice about how to answer that pain question. 🙂 Thanks for adding the point that apps can also be used for this purpose. Take care! – Jess

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