Living With Endometriosis? Here’s How You Can Improve Your Health Journey

Social connections are more than just nice to have. In fact, humans have an innate tendency towards being social; a need that is deeply-rooted within our biology. Knowing this, it is unsurprising that our need to connect with others and thrive in social groups is critical to our survival.

Social connectedness, often viewed as the antidote to loneliness, refers to the extent to which we feel we have meaningful and close relationships with others—whether this be individuals, groups, or even society at large.¹ This sense of connection has two main parts: caring about others and feeling cared for by others. Together these help create a sense of belonging to a group or community.¹ Fulfilling these needs has been shown to improve physical health, as well as mental and emotional well-being.

Though you may not think of it that often, social connectedness is truly as important as food and water when it comes to our basic human needs. And like thirst and hunger, loneliness is our body’s way of warning us that our needs for social connection are not being met. Multiple studies report that loneliness is associated with higher rates of depression, anxiety, and suicide.^{2, 3} Beyond this, one study even suggests that a lack of social connection can pose a greater harm to our physical health than obesity, smoking and high blood pressure.⁴

For those living with invisible chronic conditions like endometriosis, this loneliness and its detriments can be profound.

Endometriosis is a chronic condition where tissue similar to the lining of the uterus grows outside the uterus.⁵ It can cause debilitating pain, amongst a myriad of other symptoms, leaving a heavy toll on quality of life.⁵ It is without a doubt that endometriosis is challenging, both physically, mentally and emotionally.

Endometriosis affects approximately 10% of women and an unknown number of gender-diverse individuals.⁵ With 5.4-10 years as the average time to diagnosis, many people suffer in silence.^{6, 7} Yet even for people with a diagnosis, the condition often feels misunderstood, and concerns go unheard. Common symptoms include chronic pain and fatigue, as well as a need to urgently access bathroom facilities due to nausea, bowel and bladder issues and/or heavy menstrual bleeding.⁸ These symptoms can also act as barriers to social activities.

With variable symptoms and with the stigma surrounding endometriosis, it may be tough for those around you to genuinely understand what having endometriosis is like. Often the best support can come from speaking with other people with endometriosis or hearing/reading stories that are similar to what you have experienced. It is this community who understands the ins-and-outs of endometriosis: the confusing symptoms, hard decisions, fatigue, strive for relief, and the isolation. And the good news: there are many ways to seek this kind of support.

Participate in Research

As clinicians, researchers and people with lived experience dedicated to supporting people with endometriosis, we believe that finding a way to connect with one another, and the community, is critical to overall health and wellbeing. Storytelling is suggested to be one of the most powerful tools for fostering connection.

At the University of British Columbia, we are investigating a new approach to building community using co-created digital storytelling workshops designed by StoryCentre.⁹ If you have endometriosis, we invite you to come along with us on this journey.

Watch some of these stories here.

If you live in Canada, have endometriosis and want to try group digital storytelling for yourself, please contact EndoStory@cw.bc.ca.

Connect with the Endometriosis Community

The Endometriosis Network Canada offers great opportunities to connect with others with endometriosis including regular virtual support groups, an annual run and volunteer opportunities. 

Take Action

Become an advocate and use your voice to raise awareness about endometriosis to drive policy change.

To take action on endometriosis care in Canada by sharing your story and contacting your Member of Parliament, check out www.EndoAct.ca.

Take Care of Yourself

Remember that sharing is hard, and people with chronic illness often experience social isolation. Your pain is real, but we don’t always get the response we are looking for from others. If you struggle to connect with your community, resources are available to help you feel less alone including the following:

• 9-8-8: Suicide Crisis Helpline 
• Wellness Together Canada: 1-866-585-0445 
• Hope for Wellness Indigenous Helpline: 1-855-242-3310 
• A list of provincial mental health support services can be found here

Sharing can be difficult but taking that extra step to connect with others and sincerely share your story can make a world of difference. Though you may feel alone, there is support within reach. Don’t hesitate to seek out and embrace these connections – they can provide the strength and encouragement you need to thrive.

The Endometriosis Pelvic Pain Laboratory at the University of British Columbia is made up of clinicians, researchers, students and patient partners working toward improving the understanding, care and awareness of endometriosis through cutting-edge interdisciplinary research and knowledge translation. For more information about our research, visit https://yonglab.med.ubc.ca/

References

1. O ’Rourke Hannah M., Sidani S. Definition, Determinants, and Outcomes of Social Connectedness for Older Adults: A Scoping Review. Journal of Gerontological Nursing. 2017 Jul;43(7):43–52.
2. Holt-Lunstad J, Smith TB, Baker M, Harris T, Stephenson D. Loneliness and Social Isolation as Risk Factors for Mortality: A Meta-Analytic Review. Perspectives on Psychological Science. 2015 Mar 1;10(2):227–37.
3. Holt-Lunstad J. Social Connection as a Public Health Issue: The Evidence and a Systemic Framework for Prioritizing the “Social” in Social Determinants of Health. Annual Review of Public Health. 2022 Apr 5;43(Volume 43, 2022):193–213.
4. House JS, Landis KR, Umberson D. Social Relationships and Health. Science. 1988;241(4865):540–5.
5. Giudice LC. CLINICAL PRACTICE: Endometriosis. N Engl J Med. 2010 Jun 24;362(25):2389–98.
6. Gruber TM, Mechsner S. Pathogenesis of Endometriosis: The Origin of Pain and Subfertility. Cells. 2021 Jun;10(6):1381.
7. Singh S, Soliman AM, Rahal Y, Robert C, Defoy I, Nisbet P, Leyland N. Prevalence, Symptomatic Burden, and Diagnosis of Endometriosis in Canada: Cross-Sectional Survey of 30 000 Women. J Obstet Gynaecol Can. 2020 Jul;42(7):829-838. doi: 10.1016/j.jogc.2019.10.038. Epub 2020 Jan 27. PMID: 32001176.
8. Calvi C, Sherman KA, Pham D. Loneliness and Perceived Social Support in Endometriosis: The Roles of Body Image Disturbance and Anticipated Stigma. IntJ Behav Med. 2024 Jun 1;31(3):433–44.
9. Lambert J. Digital storytelling: Capturing lives, creating community. Routledge; 2013.