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The Bloody Truth: Understanding Endometriosis

  • By Karina Jackson, occupational therapist
  • March 28, 2024
  • 4 min read

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What is endometriosis and who does it impact?

March marks Endometriosis Awareness Month. During this month and beyond, let's continue to advocate for greater understanding, recognition, and support for those living with endometriosis.

Endometriosis affects 1 in 10 women in Canada and an estimated 176 million individuals worldwide yet remains widely misunderstood. Endometriosis is a chronic condition that has reproductive and health consequences, characterized by an abnormal growth of cells similar to the uterine lining, but in a location outside of the uterus. Common symptoms of endometriosis include pelvic pain, especially around menstruation, painful intercourse, discomfort during bowel movements or urination, and lower abdominal pain. Other symptoms may include changes in bowel habits, lower back pain, irregular or heavy menstrual bleeding, and blood in the urine.

Why is it important to raise awareness?

It takes an average of at least 5 years for an individual to receive a formal diagnosis of endometriosis in Canada (Singh et al, 2020). Endometriosis often goes unrecognized and undertreated, resulting in significant physical and emotional burdens for those affected. Sadly, women's health issues are frequently shrouded in a veil of mystery, misconceptions, and euphemisms due to the stigma that surrounds our bodies and reproductive system. Additionally, these concerns are often trivialized, leading to hesitancy in seeking care out of fear of being gaslit. This situation constitutes a healthcare crisis, as many women suffer in silence from debilitating conditions like endometriosis due to systemic failures within our medical system. 

The lack of awareness contributes to delayed diagnosis and inadequate management. By raising awareness, we can foster understanding, promote early detection, and advocate for improved care and support.

What is the impact of endometriosis on the black community?

Recent studies have highlighted disparities in the diagnosis and treatment of endometriosis, particularly among Black women. Historical biases and poorly conducted research have perpetuated the misconception that endometriosis is less prevalent in certain racial groups (Bougie, O., Nwosu, I., & Warshafsky, C., 2022). However, evidence suggests that Black women are disproportionately affected, with higher rates of perioperative complications and mortality (Westwood, S., et al., 2023). Healthcare providers must recognize and address these disparities to ensure equitable care for all individuals.

What is the role of occupational therapy in the management of endometriosis?

Occupational therapy offers a holistic approach to managing endometriosis, focusing on enhancing the quality of life for individuals living with the condition. While additional training in pelvic floor health is beneficial, all occupational therapists can play an important role in addressing the unique needs of patients with endometriosis. By considering the physical, emotional, and environmental factors impacting daily functioning, occupational therapists can provide personalized interventions to support individuals in achieving their goals and improving their overall well-being.

Specific occupational therapy interventions include, but are not limited to, the following:

  1. Pain management strategies: Strategies such as deep breathing exercises, mindfulness practices, tracking symptoms, nervous system regulation, promoting proper nutrition & hydration, and developing a plan for flare-ups.

  2. Activity modification: Recommending ergonomic adjustments and energy conservation strategies such as a supportive chair, an adjustable desk to alternate between sitting and standing, and frequent short breaks to rest and stretch muscles. Additionally, using voice-to-text software or keyboard shortcuts to reduce typing strain and conserve energy are also helpful.

  3. Pelvic floor rehabilitation: Interventions such as biofeedback, strategies to reduce muscle tension, pelvic floor strengthening, and more are provided to address pelvic floor issues that help to improve bladder, bowel, and sexual function.

  4. Emotional support and coping strategies: Offering emotional support and teaching coping strategies to navigate the emotional challenges associated with chronic illness, fostering resilience, and promoting psychological well-being. 

Individuals with endometriosis deserve a comprehensive, multidisciplinary approach to management, highlighting the importance of support from various healthcare disciplines. Alongside occupational therapy, individuals with endometriosis can benefit from the expertise of gynecology and other specialized physicians and/or surgeons, professionals in physiotherapy, sex therapy, naturopathy, psychology, nutrition, and more. Each of these disciplines offers unique interventions and strategies to address the multifaceted challenges posed by endometriosis, promoting enhanced quality of life.

Helpful resources:

https://endometriosisnetwork.com/

https://rsphealth.org/endometriosis/

https://endoact.ca/about/

Disclaimer: The content provided on this blog is for informational purposes only. We urge our readers to consider this information as a preliminary resource and exercise caution in making decisions based on it.

References

Bougie, O., Nwosu, I., & Warshafsky, C. (2022). Revisiting the impact of race/ethnicity in endometriosis. Reproduction & fertility, 3(2), R34–R41. https://doi.org/10.1530/RAF-21-0106

Singh et al. "Prevalence, symptomatic burden, and diagnosis of endometriosis in Canada: cross-sectional survey of 30 000 women." JOGC. 42.7 (2020): 829-838.

Wahl KJ, Yong PJ, Bridge-Cook P, Allaire C; EndoAct Canada. Endometriosis in Canada: It Is Time for Collaboration to Advance Patient-Oriented, Evidence-Based Policy, Care, and Research. J Obstet Gynaecol Can. 2021 Jan;43(1):88-90. doi: 10.1016/j.jogc.2020.05.009. Epub 2020 Jun 2. PMID: 32753352.

Westwood, S., Fannin, M., Ali, F., Thigpen, J., Tatro, R., Hernandez, A., Peltzer, C., Hildebrand, M., Fernandez-Pacheco, A., Raymond-Lezman, J. R., & Jacobs, R. J. (2023). Disparities in Women With Endometriosis Regarding Access to Care, Diagnosis, Treatment, and Management in the United States: A Scoping Review. Cureus, 15(5), e38765. https://doi.org/10.7759/cureus.38765

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