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Chronic Pain
The Psychological Impact of Endometriosis
Personal Perspective: The pathways of endometriosis as seen by a psychologist.
Updated July 28, 2023 Reviewed by Davia Sills
A growing interest in endometriosis has been displayed in the past years in the medical-scientific community, but also on social media platforms. Endometriosis, commonly known as “endo,” is considered a chronic gynecological condition in which endometrial-like tissues develop in areas outside the uterus [1]. Interestingly, recent literature emphasizes the genetic/epigenetic and neuro-endocrine-immune implications of endometriosis with marked inflammatory mechanisms [2]–[4]. This indicates the multifaced nature of endometriosis.
Although this blog post is not intended to bring forward a comprehensive understanding of the clinical components of endometriosis, it is important to mention that approximately 10 percent of those assigned female at birth develop endometriosis in their reproductive years [5]. The expression of endometriosis is generally symptomatic but can also be asymptomatic, although there is no clear consensus with regard to its sub-types and classification. The clinical presentation of endometriosis is associated with pain (which can be experienced as sharp, burning, shooting, or stabbing) such as dysmenorrhea (painful periods) or dyspareunia (painful intercourse); risk of infertility; risk of developing additional gynecological-oncological conditions (e.g., ovarian cancer); gastroenterological complications (e.g., irritable bowel syndrome) [6]–[8], to name a few among the ever-emerging developments in endometriosis.
In addition to its clinical pathways, endometriosis is also associated with mental health conditions, particularly depression and anxiety disorders [9]. The manifestation of pain impacts the psychological status of the females with endometriosis and echoes the presence of stress, anxiety, depression, generalized worry, and body image dissatisfaction [10], [11], all of which decrease the overall quality of life [12]. Females can systematically experience such unbearable cycle-related pain intensity, leaving them unable to carry on with daily-life activities, work, or even walking. Such a cycle pattern occurs every month in a significant number of females with endometriosis. As a result, other domains of life corresponding to interpersonal and social functioning are inevitably affected, particularly partnerships [13] and relationships with close loved ones. But this is just a small snapshot of what endometriosis entails.
My endometriosis journey
I am one of those with a first-hand lived experience of endo. For many years, endo and I have gotten to know each other quite well; therefore, I believe I can say a few words about it. I define endometriosis in my own way—“silent suffering from a silenced condition.” It took me 16 years to receive a diagnosis. Yes, I had a diagnostic delay of 16 years.
In these years, I consulted many medical professionals in different countries, and none of them seemed to ever consider endometriosis as a potential cause for my symptoms. Even more, I encountered endometriosis specialists who firmly decided there was no sign of it on the ultrasound; therefore, how could I possibly have it? Only through an exploratory laparoscopy was I informed that, indeed, my type of endometriosis is a special one, one that cannot be seen via an ultrasound named “deep-infiltrating endometriosis.” The reason I know after so many years I actually have endometriosis is because of my persistence and determination to convince medical professionals to go beyond the traditional and reductionist clinical approach—hormonal treatment or painkillers. In my case, hormonal treatment masked the endo symptoms for a short period of time because I experienced severe side effects from it. It added more complications than comfort and relief.
I can sincerely remark that the core of my endometriosis journey has been dismissal. Loved ones, friends, colleagues, and, above all, medical professionals intended to offer me support by mentioning, “Take it easy,” “Change your mindset,” “You don’t have a high threshold for pain,” “The pain is in your head,” “You could control your pain if you truly wanted to” etc. It was challenging even for my parents to understand what I was experiencing since doctors were considering that all of the symptoms were “normal.” Dismissal at its best.
This led me to encapsulate this topic, this part of my life, and hide the reality of how I truly felt physically and psychologically, even from those whom I trusted the most. Even after the excision of lesions, my primary symptom is cycle pain, which lasts for two to three days a month. The pain appears suddenly; I usually perceive it as burning and sometimes stabbing, and it interferes heavily with continuing my activity. The only option for me is to call in sick for the rest of the day, take a significant amount of painkillers, and wait for it to pass in an agonizing state of complete vulnerability.
The secondary symptoms are less intense but still significant and consist of back pain, nausea, changes in appetite, fatigue, irritability, difficulty concentrating, insomnia, anxiety, an overall state of discomfort, and a weakened immune system (e.g., I could easily catch a cold in those days). Needless to say, I usually experience more difficulty in completing tasks and more inactivity pre- and during the cycle. Lucky me, these symptoms are at their peak for approximately seven to 10 days a month, meaning a “monthly endo episode.” I am able to enjoy life for the rest of the month.
Coping with endometriosis
As a psychologist now, I understand the core dismissal I experienced. Many people listen in order to reply, not necessarily to understand. It is one of the underlying obstacles to human-to-human communication and connection.
And there is pain (the emotional kind) in dismissal. The many years of systematic dismissal cannot be easily undone, considering the context of a chronic medical condition. But at least I now have a name for it. I could, therefore, educate myself about the pathways of endometriosis through reading scientific papers, books, attending webinars and support groups.
Despite hiding endo to the best of my ability for many years, I have developed several ways to cope and maintain peace with it. I am trying to engage as much as possible in a rigorous self-care routine, which starts with prioritizing sleep quality, healthy nutrition, physical activity, journaling, having my own personal therapeutic journey, and seeking out online support groups for endo. Although it looks like a roller coaster, I am also trying to be consistent with nurturing self-compassion and reducing self-criticism.
Endo is a long journey, and having this experience, I am now better equipped physically and psychologically as I envision the next surgery. I am genuinely happy to see more and more interest in endometriosis in general and how it is catching the eye of many at the moment. I am also hopeful that, by increasing the visibility of endo, many will find relief in knowing their symptoms have a name. It is clear by now that endometriosis poses a burden at a personal, social, and economic level [14]. Therefore, a multidisciplinary clinical approach is absolutely needed, and I believe psychosocial support should take an important place.
As an ending note, the pathogenesis, diagnostic, medical treatment, and psychological approach are fundamental aspects of today’s modern management of endometriosis that require much understanding and research. But this is just one piece of the puzzle since more consideration for female health is vital.
References
[1] H. S. Taylor, A. M. Kotlyar, and V. A. Flores, “Endometriosis is a chronic systemic disease: clinical challenges and novel innovations,” The Lancet, vol. 397, pp. 839–852, 2021.
[2] G. J. Lee, F. Porreca, and E. Navratilova, “Prolactin and pain of endometriosis,” Pharmacology and Therapeutics, vol. 247, p. 108435, 2023. doi: 10.1016/j.pharmthera.2023.108435.
[3] P. R. Koninckx, A. Ussia, L. Adamyan, A. Wattiez, V. Gomel, and D. C. Martin, “Pathogenesis of endometriosis: the genetic/epigenetic theory,” Fertil Steril, vol. 111, no. 2, pp. 327–340, 2019, doi: 10.1016/j.fertnstert.2018.10.013.
[4] N. Rahmioglu et al., “The genetic basis of endometriosis and comorbidity with other pain and inflammatory conditions,” Nat Genet, vol. 55, no. 3, pp. 423–436, 2023, doi: 10.1038/s41588-023-01323-z.
[5] World Health Organization, “Endometriosis,” 2023. https://www.who.int/news-room/fact-sheets/detail/endometriosis.
[6] A. W. Horne and S. A. Missmer, “Pathophysiology, diagnosis, and management of endometriosis,” BMJ, 2022, doi: 10.1136/bmj-2022-070750.
[7] S. K. Agarwal et al., “Clinical diagnosis of endometriosis: a call to action,” Am J Obstet Gynecol, vol. 220, no. 4, pp. 354–364, 2019, doi: 10.1016/j.ajog.2018.12.039.
[8] M. Kvaskoff et al., “Endometriosis and cancer: a systematic review and meta-analysis,” Hum Reprod Update, vol. 27, no. 2, pp. 393–420, 2021, doi: 10.1093/humupd/dmaa045.
[9] L. Maulitz, E. Stickeler, S. Stickel, U. Habel, S. N. Tchaikovski, and N. Chechko, “Endometriosis, psychiatric comorbidities and neuroimaging: Estimating the odds of an endometriosis brain,” Front Neuroendocrinol, vol. 65, p. 100988, 2022, doi: 10.1016/j.yfrne.2022.100988.
[10] C. Volker and J. Mills, “Endometriosis and body image: Comparing people with and without endometriosis and exploring the relationship with pelvic pain,” Body Image, vol. 43, pp. 518–522, 2022, doi: 10.1016/j.bodyim.2022.10.014.
[11] M. Kalfas, C. Chisari, and S. Windgassen, “Psychosocial factors associated with pain and health-related quality of life in endometriosis: A systematic review,” European Journal of Pain (United Kingdom), vol. 26, no. 9, pp. 1827–1848, 2022, doi: 10.1002/ejp.2006.
[12] L. Della Corte et al., “The burden of endometriosis on women’s lifespan: A narrative overview on quality of life and psychosocial wellbeing,” International Journal of Environmental Research and Public Health, vol. 17, no. 13. MDPI AG, pp. 1–17, 2020. doi: 10.3390/ijerph17134683.
[13] S. Maren et al., “Partners matter: The psychosocial well-being of couples when dealing with endometriosis,” Health Qual Life Outcomes, vol. 20, no. 86, pp. 1–10, 2022, doi: 10.1186/s12955-022-01991-1.
[14] M. Armour, K. Lawson, A. Wood, C. A. Smith, and J. Abbott, “The cost of illness and economic burden of endometriosis and chronic pelvic pain in Australia: A national online survey,” PLoS One, vol. 14, no. 10, p. e0223316, 2019, doi: 10.1371/journal.pone.0223316.
