When I hear the word “endometriosis,” the first thing that comes to mind is “pain”—burning, stabbing, debilitating pain. However, endometriosis (endo) is a condition that is often described and treated medically as a fertility issue [1]. While it is true that endo can affect fertility, this label can obscure the significant pain and discomfort that many people with IVs experience. It’s like calling a hurricane a “wind problem”—it doesn’t quite capture the impact, does it?
But there is more to this story… pain caused by an IV can lead to disability, affecting a person’s ability to perform daily tasks and maintain a satisfactory level of quality of life [2-7]. It’s not just about the inability to work or go to school – it’s about the constant adjustments and adjustments that need to be made to manage the pain [8-10]. It’s about missed social events, abandoned hobbies, and constant fatigue. It is a disability that is often invisible to others, but very real to those who live 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 recognizes the painful experiences of people with endometriosis and extends beyond physical pain to examine the psychological and physical effects [11]. Our study focused on pain intensity, “pain catastrophizing,” a psychological response to anticipated or actual pain, and pain disability. What we found was that when pain escalates to moderate or higher levels, pain destruction and disability begin 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 itself in many ways, from difficulty performing daily activities to reduced participation in social activities.
So, what does this all mean? It’s not just about physical pain – it’s also about how we perceive and respond to it. Think of this as being at your favorite concert. the music (pain) is blaring, but how you react (catastrophe) can determine whether you crowd surf or cover your ears.
In conclusion, our study highlights the importance of addressing both the physical and psychological aspects of endo. It is not enough to just treat the physical symptoms – we must also address the psychological and physical effects. This comprehensive approach can lead to better outcomes and improved quality of life for those living with IVs.
So as we continue to raise awareness about endo this month, let’s not forget the importance of comprehensive care for people with this condition. Health care providers are challenged to look at the big picture, considering not only the physical symptoms, but also the psychological and social effects of the condition.
This study is a step forward in our understanding of how endo affects individuals. It reminds us that endo awareness is not just about recognizing the condition, but also understanding the complexity of the pain and disability it can cause. As we continue to learn more, we can hope for better care and improved quality of life for those living with IVs.
If you are interested in reading a summary of our recent publication on pain catastrophizing and pain disability in a diverse sample of people with IVs, click here. If you are looking for the full PDF version, please email us! If you’re interested in more results from our endo studies, check out this blog and these poster presentations. For more information on endo, including what it is, who can “have” it, the basics of why we only have information for certain populations of people with endo, and how to get a diagnosis, see our blog from March 2022 .
Sam Levang, M.Sc. (she/her)
Ph.D. Student, Clinical Psychology
Sexual Health Research Laboratory
Queen’s University
bibliographical references
Jones CE. The pain of being inside: towards a feminist disability studies reading of endometriosis. Hypatia. 2016? 31 (3): 554–71. doi: 10.1111/hypa.12248
Van Niekerk L, Johnstone L, Matthewson M. Health-related quality of life in endometriosis: The influence of the presence and distress associated with endometriosis. J Health Psychol. 2022;13591053221085051. doi: 10.1177/13591053221085051
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
Ruszała M, Dłuski DF, Winkler I, et al. The health status and quality of life of women suffering from endometriosis. J Clin Med. 2022? 11 (7): 2059. doi: 10.3390/jcm11072059
Martins J, Ferreira G, Vilaça M, et al. Quality of life and sexual satisfaction in women with endometriosis: the moderating role of symptom severity. Mental sex. 2022;13(4):952–64. doi: 10.1080/19419899.2021.1943501
Márki G, Bokor A, Rigó J, et al. Physical pain and emotion regulation as the main predictors of health-related quality of life in women living with endometriosis. Hum Reprod. 2017? 32 (7): 1432–8. doi: 10.1093/humrep/dex091
de Barros Meneguetti M, Silva FP, Dias GN, et al. Assessment of quality of life and psychological impact in women with endometriosis according to pain intensity. Psychol Health Med. 2022? 1–10. doi: 10.1080/13548506.2022.2121972
Culley L, Law C, Hudson N, et al. The social and psychological impact of endometriosis on women’s lives: a critical narrative review. Update Hum Reprod. 2013? 19 (6): 625–39. doi: 10.1093/humupd/dmt027
Klein S, D’Hooghe T, Meuleman C, et al. What is the societal burden of endometriosis-related symptoms? A prospective Belgian study. Reprod BioMed Online. 2014? 28 (1): 116–24. doi: 10.1016/j.rbmo.2013.09.020
Simoens S, Dunselman G, Dirksen C, et al. The burden of endometriosis: cost and quality of life of women with endometriosis and treatment in referral centers. Hum Reprod. 2012? 27 (5): 1292–9. doi: 10.1093/humrep/des073
Levang SL, Pukall CF. An investigation of associations between pain catastrophizing and pain disability in a diverse sample of individuals with endometriosis. J Obstet Gynecol Can. 2024? 102340. doi: 10.1016/j.jogc.2023.102340
