Skip to contentSkip to search

Editorial: living with endometriosis

Personal health · May 14, 2021

I am one-week post-op, recovering from yet another endometriosis surgery, with a heating pad on my back and a freezer pack on my belly, trying to numb the excruciating pain that radiates throughout my pelvis.

I find myself seething with anger. I am angry that this disease affects 1 in 10 women (or those born with a uterus) or roughly 190 million people worldwide.1 I am angry that this disease does not yet have a cure or significant body of medical research, though it debilitates and robs so many individuals of their hopes and dreams.2 I am angry, because I believe that if this were a disease that affected 1 in 10 cisgender men, there would be universal outrage and ample funding allocated to research, treatment, and a cure.

I am one of the lucky ones who has access to specialized, publicly-funded, endometriosis care — sadly this is not the norm. Endometriosis is complex, and care often requires the collaborative efforts of an interdisciplinary team. Excision surgery must be performed by a specialist gynecologist who has specific training in this difficult surgical skillset, and there is a desperate need for more of these specialists throughout the country and the world. Inadequacies embedded within the current Canadian healthcare system result in long waitlists of 3 – 9 months for an appointment and up to 12 months after that for surgery among the very few qualified centres.3

We need to do better. We need to do better for those who are dismissed over and over again by a medical system and told that the pain is just in their head. We need to do better for the folks who are told that they are just experiencing a bad period. We need to understand that endometriosis is a full body, systemic disease, not just a reproductive condition.4 We need to educate our youth that painful sex and period pain are not normal, that they do not need to suffer and accept that their pain is something they just have to get used to.

As a new therapist, I have had to grapple with deciding whether or not to share my story publicly as to remain ‘professional’ and not disclose more than I want clients to know about my personal life.

Here’s the thing: endometriosis and chronic pelvic pain have been such a significant part of my life and have shaped who I am as both a person and a therapist, that I have come to the conclusion that I am done with being silent.

There is no better honour than to fight back, educate, and advocate so that we can do something to change this devastating disease and prevent further suffering.

And I hope that through my voice and sharing my experience, I can counsel many folks who have suffered from these debilitating and misunderstood symptoms.

I wrote my thesis on the mental health impact of endometriosis and chronic pelvic pain and dedicated it to the 190 million individuals worldwide who are my fellow “endo warriors.” I committed to continuing to use my voice to advocate for this population and it’s about time that I honour that promise.

I am on the Patient Research Advisory Board (PRAB) at Endometriosis Pelvic Pain Laboratory at the University of British Columbia, where I have the opportunity to put some of this exasperation to work.

This is what some of my fellow volunteers have been working on: https://endoact.ca/

Ultimately, there is hope. Endometriosis and chronic pelvic pain have been a lengthy journey that I will undoubtedly continue to endure, and although it has been hell at many points, it has shown me my resiliency, strength and bravery, and has formed the foundation of my work as a therapist who has lived experience with persistent pain.

For more information on painful sex and endometriosis, please visit https://endopain.endometriosis.org/ and https://endometriosisnetwork.com/.


[1] The World Health Organization. (2021, March 31). Endometriosis. https://www.who.int/news-room/fact-sheets/detail/endometriosis

[2] Wahl, K.J., Yong, P.J., Bridge-Cook, P., & Allaire, C. (2020). Endometriosis in Canada: It is time for collaboration to advance patient-oriented, evidence-based policy, care, and research. Journal of Obstetrics and Gynecology Canada, 43(1), 88-90.

[3] Wahl, K.J., Yong, P.J., Bridge-Cook, P., & Allaire, C. (2020). Endometriosis in Canada: It is time for collaboration to advance patient-oriented, evidence-based policy, care, and research. Journal of Obstetrics and Gynecology Canada, 43(1), 88-90.

[4] Zondervan, K.T., Becker,C.M., and Missmer, S.A. (2020). Endometriosis. The New England Journal of Medicine. DOI: 10.1056/NEJMra1810764

Authored by:
Lauren Gelfer
Clinical Counsellor

Share article: