How can body image cause distress for people with endometriosis?

For Endometriosis Awareness Month, researcher Melissa Pehlivan shares new insights into the level of body image distress amongst people with this chronic health condition.

Endometriosis is a chronic systemic disease that affects approximately 1 in 9 Australians (Rowlands et al., 2021).

In endometriosis, there is growth of endometrial-like tissue outside of the uterus (Koninckx et al., 2021) which often leads to debilitating physical symptoms (e.g., chronic pelvic pain, painful periods).

Individuals with endometriosis report significant mental health problems, with more than half experiencing symptoms of depression and anxiety (González-Echevarría et al., 2019; Laganà et al., 2015).

Body image concerns have been found to contribute to the high levels of depression experienced by individuals with endometriosis (Pehlivan et al., 2022).

Individuals with endometriosis experience a number of bodily changes, which could result in poor body image. Body image refers to the way we feel, think and respond to our body’s looks and functioning.

In endometriosis, changes due to illness and treatment (e.g., surgery, medication) lead to many appearance-based (e.g., surgery scars, abdominal bloating, acne, weight gain) and functional (e.g., fertility issues) bodily changes.

In today’s society of photo touch-ups and filters, we are expected to be flawless.

For those who have a chronic condition, like endometriosis, which comes with many unavoidable bodily changes, these beauty ideals are even more unrealistic.

Unfavourable comparisons to healthy peers, celebrities and influencers are likely to lead to feelings of low self-worth and low mood.

Further, those living with endometriosis are usually in their reproductive years (e.g., 14-50 yrs), when a lot of emphasis is placed on our outward appearance and female bodies are scrutinized. Concerns over fertility with endometriosis may also deeply impact one’s identity and sexuality.

For my Masters research project, I led a study where we recruited nearly a 1000 individuals living with endometriosis through Endometriosis Australia and surveyed their mental wellbeing over time (Pehlivan et al., 2022).

This was the first study to investigate how body image might play a role in the level of distress experienced by individuals with endometriosis over time.

We found that greater body image concerns led to lower self-esteem or self-worth, which over time, resulted in greater depressive symptoms. That is, individuals with endometriosis who felt negatively about their body, came to feel negatively about themselves as-a-whole and experienced low mood.

We know that our body image has a huge impact on our sense of self-worth (Wichstrom & von Soest, 2016), particularly for young people (Goldschmidt et al., 2016, Sharpe et al., 2018).

However, we are so much more than our bodies. Our bodies are simply our vessel in life. Taking a body neutral approach like this, or even a self-compassionate approach, where one’s perceived bodily ‘flaws’ are looked upon with compassion or kindness (Neff, 2003), may help in these kinds of difficult situations (Pehlivan et al., 2022).

Indeed, for the second part of my Masters project, I conducted a systematic review and meta-analysis, exploring the potential of different psychological interventions for body image among individuals with endometriosis and other similar gynaecological conditions (e.g., Polycystic Ovarian Syndrome) (Pehlivan et al., 2023).

We found that an acceptance-based approach, where one acknowledged and came to accept their perceived ‘flaws’ was particularly helpful in alleviating previous body image concerns.

Addressing these body image concerns is particularly important, as there is some evidence that endometriosis may not only be linked with poor body image, but eating disorders as well (Aupetit et al., 2022; Koller et al., 2023).

Perhaps individuals’ experiencing poor body image from the bodily changes associated with endometriosis may turn to their eating as a way to ‘gain control’ over the bodily changes or self-soothe.

As always, it is important that individuals experiencing body image or eating concerns reach out for help. For example, Butterfly offers a free, confidential helpline for anyone experiencing these concerns.

We know that many individuals with endometriosis often report difficulties in their interactions with healthcare professionals (Young et al., 2019; Grundrstrom et al., 2019) and feel unsupported in their endometriosis management (Armour et al., 2021; Pettersson et al., 2020).

We are looking for innovative ways to better support individuals with endometriosis and help improve their quality of life.

Recently, I was part of a team of investigators who developed a text-messaging intervention, called EndoSMS, in partnership with individuals living with endometriosis (Sherman et al., 2022).

EndoSMS, a project funded by Endometriosis Australia, is a 6-month automated text-messaging program which provides individuals with general information about endometriosis, as well as tips, strategies and guidance for promoting mental wellbeing.

We recently tested a brief version of EndoSMS in a randomized-controlled trial (Sherman et al., 2023) and are currently writing up the results ready for dissemination – so stay tuned! There’s lots of exciting work being done in this space to better support individuals living with endometriosis.

Get support & learn more

• Endometriosis Australia 
• Butterfly’s National Helpline – for support with eating disorders and body image concerns
• Podcast episode: Eating disorders and other health conditions.  – In this podcast episode, Ange shares her experience with endometriosis and an eating disorder.
• Body image: navigating the terms and movements – learn the difference between body positivity and body neutrality.

 

References 

• Armour M, Hawkey A, Micheal S, Diezel H, Chalmers K. ‘A day to day struggle’: a comparative qualitative study on experiences of women with endometriosis and chronic pelvic pain. Fem Psychol 2021;32(4):482-500
• Aupetit, A., Grigioni, S., Roman, H., Coëffier, M., Bréant, A., Hennetier, C., & Achamrah, N. (2022). Association between Endometriosis, Irritable Bowel Syndrome and Eating Disorders: ENDONUT Pilot Study. Journal of Clinical Medicine, 11(19), 5773.
• Goldschmidt, AB, M. Wall, T.-H.J. Choo, C. Becker, D. Neumark-Sztainer. Shared risk factors for mood-, eating-, and weight-related health outcomes. Health Psychology, 35 (3) (2016), pp. 245-252, 10.1037/hea0000283
• González-Echevarría, A. M., Rosario, E., Acevedo, S., & Flores, I. (2019). Impact of coping strategies on quality of life of adolescents and young women with endometriosis. Journal of Psychosomatic Obstetrics Gynaecology, 40(2), 138– 145. https://doi.org/10.1080/0167482x.2018.1450384
• Grundström H, Alehagen S, Kjølhede P, Berterö C. The double-edged experience of healthcare encounters among women with endometriosis: a qualitative study. J Clin Nurs 2018 Jan 18;27(1-2):205-211.
• Koller, D., Pathak, G. A., Wendt, F. R., Tylee, D. S., Levey, D. F., Overstreet, C., … & Polimanti, R. (2023). Epidemiologic and Genetic Associations of Endometriosis With Depression, Anxiety, and Eating Disorders. JAMA Network Open, 6(1), e2251214-e2251214.
• Koninckx, PR, A. Ussia, L. Adamyan, M. Tahlak, J. Keckstein, A. wattiez, D.C. Martin. The epidemiology of endometriosis is poorly known as the pathophysiology and diagnosis are unclear. Best Practice and Research Clinical Obstetrics and Gynaecology, 71 (2021), pp. 14-26, 10.1016/j.bpobgyn.2020.08.005
• Laganà, A. S., Condemi, I., Retto, G., Muscatello, M. R. A., Bruno, A., Zoccali, R. A., Triolo, O., & Cedro, C. (2015). Analysis of psychopathological comorbidity behind the common symptoms and signs of endometriosis. European Journal of Obstetrics and Gynecology and Reproductive Biology, 194, 30–33. https://doi.org/10.1016/j.ejogrb.2015.08.015
• Neff, K.D. Self-compassion: An alternative conceptualization of a healthy attitude toward oneself. Self and Identity, 2 (2) (2003), pp. 85-101, 10.1080/15298860309032
• Pehlivan, M. J., Sherman, K. A., Wuthrich, V., Gandhi, E., Zagic, D., Kopp, E., & Perica, V. (2023). The effectiveness of psychological interventions for reducing poor body image in endometriosis, PCOS and other gynaecological conditions: a systematic review and meta-analysis. Health Psychology Review, 1-28.
• Pehlivan, M. J., Sherman, K. A., Wuthrich, V., Horn, M., Basson, M., & Duckworth, T. (2022). Body image and depression in endometriosis: Examining self-esteem and rumination as mediators. Body Image, 43, 463-473.
• Pettersson A, Berterö CM. How women with endometriosis experience health care encounters. Womens Health Rep (New Rochelle) 2020 Nov 01;1(1):529-542
• Rowlands, IJ, J.A. Abbott, G.W. Montgomery, R. Hockey, P. Rogers, G.D. Mishra Prevalence and incidence of endometriosis in Australian women: A data linkage cohort study. British Journal of Obstetrics and Gynaecology, 128 (4) (2021), pp. 657-665, 10.1111/1471-0528.16447
• Sharpe, H., P. Patalay, T.-H. Choo, M. Wall, S.M. Mason, A.B. Goldschmidt, D. Neumark-Sztainer Bidirectional associations between body dissatisfaction and depressive symptoms from adolescence through early adulthood. Development and Psychopathology, 30 (4) (2018), pp. 1447-1458, 10.1017/s0954579417001663
• Sherman KA, Pehlivan MJ, Singleton A, Hawkey A, Redfern J, Armour M, Dear B, Duckworth TJ, Ciccia D, Cooper M, Parry KA, Gandhi E, Imani SA. Co-design and Development of EndoSMS, a Supportive Text Message Intervention for Individuals Living With Endometriosis: Mixed Methods Study JMIR Form Res 2022;6(12):e40837
• Sherman, K. A., Pehlivan, M. J., Redfern, J., Armour, M., Dear, B., Singleton, A., … & Gandhi, E. (2023). A supportive text message intervention for individuals living with endometriosis (EndoSMS): Randomized controlled pilot and feasibility trial. Contemporary Clinical Trials Communications, 32, 101093.
• Wichstrøm, L & T. von Soest Reciprocal relations between body satisfaction and self-esteem: A large 13-year prospective study of adolescents. Journal of Adolescence, 47 (2016), pp. 16-27,
• Young K, Fisher J, Kirkman M. Partners instead of patients: women negotiating power and knowledge within medical encounters for endometriosis. Feminism Psychol 2019 Jan 30;30(1):22-41