Beyond the Pain: Unveiling the Link Between Pain Catastrophizing and Pain Disability in Endometriosis Warriors

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When I hear the word “endometriosis,” the first thing that pops into my mind is “pain”—scorching, stabbing, debilitating pain. However, endometriosis (endo) is a condition that is often described and medically treated as a fertility issue [1]. While it’s true that endo can affect fertility, this label can overshadow the significant pain and discomfort that many individuals with endo experience. It’s like calling a hurricane a “wind problem”—it doesn’t quite capture the full impact, does it?

But there’s more to this story…the pain caused by endo can lead to disability, affecting a person’s ability to perform daily tasks and maintain a satisfying level of quality of life [2-7]. It’s not just about being unable to work or go to school—it’s about the constant adjustments and accommodations that must be made to manage the pain [8-10]. It’s about the social events missed, the hobbies given up, and the constant fatigue. It’s a disability that is often invisible to others, but all too real for those living with it. 

As we splash the world with a vibrant shade of yellow for Endometriosis Awareness Month, I’d like to highlight a recent study we conducted that acknowledges the painful experiences of persons with endometriosis and extends beyond the physical pain to examine psychological and physical impacts [11]. Our study focused on pain intensity, “pain catastrophizing,” a psychological response to anticipated or actual pain, and pain disability. What we discovered was that when pain cranks the volume to moderate or higher levels, pain catastrophizing and disability start to take center stage.

This is where the disability aspect really comes into play; we found that as pain catastrophizing increased, so did the level of disability. This means that the more a person ruminates on their pain, magnifies its impact, and feels helpless against it, the more likely they are to experience disability. This disability can manifest in many ways, from difficulty performing daily activities to decreased participation in social activities.

So, what does this all mean? It’s not just about the physical pain—it’s also about how we perceive and respond to it. Think of this as being at your favourite concert; the music (pain) is blaring, but how you react (catastrophizing) can determine whether you’re crowd surfing or covering your ears.

In conclusion, our study highlights the importance of addressing both the physical and psychological aspects of endo. It’s not enough to just treat the physical symptoms—we also need to address the psychological and physical impacts. This comprehensive approach can lead to better outcomes and an improved quality of life for those living with endo.

So, as we continue to raise awareness about endo this month, let’s not forget about the importance of comprehensive care for individuals with this condition. Health care providers are urged to look at the big picture, considering not just the physical symptoms, but also the psychological and social implications of the condition.

This study is a step forward in our understanding of how endo affects individuals; it reminds us that raising awareness about endo is not just about recognizing the condition, but also understanding the complexities of the pain and disability it can cause. As we continue to learn more, we can hope for better care and an improved quality of life for those living with endo.

If you’re interested in reading an abstract on our recent publication on pain catastrophizing and pain disability in a diverse sample of persons with endo, click here. If you’re looking for the full PDF version, email us! If you’re interested in more results from our studies on endo, check out this blog and these poster presentations. For more information on endo, including what it is, who can ‘have’ it, the underpinnings of why we only have information on certain populations of people with endo, and how to receive a diagnosis, see our blog from March 2022.

Sam Levang, M.Sc. (she/her)
Ph.D. Student, Clinical Psychology
Sexual Health Research Lab
Queen’s University

 References

  1. Jones CE. The pain of endo existence: toward a feminist disability studies reading of endometriosis. Hypatia. 2016;31(3):554–71. doi: 10.1111/hypa.12248

  2. Van Niekerk L, Johnstone L, Matthewson M. Health-related quality of life in endometriosis: The influence of endometriosis-related symptom presence and distress. J Health Psychol. 2022;13591053221085051. doi: 10.1177/13591053221085051 

  3. Soliman AM, Coyne KS, Zaiser E, et al. The burden of endometriosis symptoms on health-related quality of life in women in the United States: a cross-sectional study. J Psychosom Obstet Gynecol. 2017;38(4):238–48. doi: 10.1080/0167482X.2017.1289512

  4. Ruszała M, Dłuski DF, Winkler I, et al. The state of health and the quality of life in women suffering from endometriosis. J Clin Med. 2022;11(7):2059. doi: 10.3390/jcm11072059

  5. Martins J, Ferreira G, Vilaça M, et al. Quality of life and sexual satisfaction in women with endometriosis: the moderator role of symptom severity. Psychol Sex. 2022;13(4):952–64. doi: 10.1080/19419899.2021.1943501 

  6. Márki G, Bokor A, Rigó J, et al. Physical pain and emotion regulation as the main predictive factors of health-related quality of life in women living with endometriosis. Hum Reprod. 2017;32(7):1432–8. doi: 10.1093/humrep/dex091  

  7. de Barros Meneguetti M, Silva FP, Dias GN, et al. Assessment of quality of life and psychological repercussions in women with endometriosis according to pain intensity. Psychol Health Med. 2022;1–10. doi: 10.1080/13548506.2022.2121972

  8. Culley L, Law C, Hudson N, et al. The social and psychological impact of endometriosis on women’s lives: a critical narrative review. Hum Reprod Update. 2013;19(6):625–39. doi: 10.1093/humupd/dmt027 

  9. Klein S, D’Hooghe T, Meuleman C, et al. What is the societal burden of endometriosis-associated symptoms? A prospective Belgian study. Reprod BioMed Online. 2014;28(1):116–24. doi: 10.1016/j.rbmo.2013.09.020 

  10. Simoens S, Dunselman G, Dirksen C, et al. The burden of endometriosis: costs and quality of life of women with endometriosis and treated in referral centres. Hum Reprod. 2012;27(5):1292–9. doi: 10.1093/humrep/des073

  11. Levang SL, Pukall CF. An investigation of associations between pain catastrophizing and pain disability in a diverse sample of persons with endometriosis. J Obstet Gynaecol Can. 2024;102340. doi: 10.1016/j.jogc.2023.102340