March 1st marked the start of Endometriosis Awareness Raising month and for the first time in the 20+ years that I have been diagnosed with this disease, I finally came to fully understand my illness and realize I was not alone. For those who may be asking, “Endo-what?” because although this is a disease that afflicts 1 in 10 girls, women and trans men worldwide, Endometriosis is a largely “invisible” disease since it is internal and felt, rather than external and seen. Endometriosis is a chronic and painful disease that affects our hormones, our immune system, and the digestive tract. It occurs when tissue similar to the lining of the uterus, or endometrium, migrates outside of the womb, and results in inflammation, as the tissue responds to the monthly fluctuations of the menstrual cycle. It is generally found in the pelvic cavity and can attach to any of the female reproductive organs including, but not limited to, the uterus, fallopian tubes, ovaries, or any of the spaces between the bladder, uterus, vagina, and rectum. Endometriosis is now considered a “whole body” disease because the tissue has been found in the areas of the bowel, intestines, appendix, rectum, and in and around the lungs.
Endometriosis like most reproductive issues eg: PCOS, fibroids, cysts, etc all start when a girl or trans boy starts menstruating, so around 11-13 years and often goes undiagnosed for many years because the majority of girls, women, trans men are told that pain during their period is “normal” and this is one of the biggest myths of menstruation. Pain in any part of the body is a sign that something is wrong and needs to be addressed. But the medical practice, as far as women's issues are concerned, is deeply entrenched in the Patriarchy – girls', women's and trans men's experiences have historically not been taken seriously by the medical profession, with our pain systematically ignored, which is guided by the unhealthy notion that we cannot know or be trusted with our own body. When I was diagnosed 20+ years ago, very little was known about this disease and specialists were not accessible in Trinidad. I was handed an old medical journal and literally told to read a paragraph that was meant to explain my disease.
I have done two surgeries to date and have suffered what seems to be a lifetime of chronic pain made worse by these surgeries. I have also developed a number of autoimmune diseases and diagnosed with IBS, which Endo Specialist have noted are quite common among Endo patients and strongly correlated. However, the dark tunnel is getting some light, we’re not seeing the end yet but in the past decade much progress has been made in research debunking previous knowledge on endometriosis, techniques to treat endometriosis and patient care. There are more specialists now who advocate for putting the patient first, listening with empathy and finding a solution together. In Trinidad we now have the Trinidad and Tobago Endometriosis Association whose mandate is to raise awareness about the disease through their activities, including hosting Nurse seminars and Endo Talks to educate the public, and support #EndoWarriors to live a better quality of life.
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Endometriosis is not only physically debilitating but it takes its toll mentally and emotionally as well. It can make you feel like your body isn’t yours or like you have no control, since you’re subjected to chronic pain, bloating, nausea, painful urination and bowel movement, brain fog, heavy bleeding, painful sex, constant fatigue, infertility, etc. Your confidence and self-esteem are depleted and because there is so much misinformation out there, Endo warriors often endure all this in silence. When I discovered communities of Endo survivors supporting each other online and in person – for the first time in 20+ years, I felt understood, heard, connected and seen - I have a tribe of people who know exactly what I’m feeling and going through, who share their methods for coping with chronic pain and their experiences of living with Endometriosis, there is solidarity, compassion, kindness and understanding. I am most grateful to have a life partner who takes care of me when I have flare ups and helps me raise awareness. Through my own awareness raising, I have connected with friends who I’ve known for years and never knew they were suffering as I was – I can be for someone what I needed for myself. I started sound therapy to help with grounding and reconnecting with my body - this temple that I had come to dislike and view as an alien. Knowledge is truly power and empowering; it gave me back my dignity. To my Endo Warriors, be kind to yourself, be your own advocate, and empower yourself with knowledge and persevere to access the best treatment possible.
The author recommends the following websites for the most up-to-date information on Endometriosis.
1. The Endometriosis Foundation of America
@endure_endo @centreforendocare @theendojournal @treatingendo @what_the_f_is_endometriosis
About the author:
Feminist activist, development worker and Endo Warrior Nicole Hosein was born in Tobago to a conservative Indo-Trinidadian family. The only girl among 4 brothers, she has been rebelling her whole life against the patriarchy. Nicole worked 10 years in administration in the private and public sector before doing her bachelor’s in Psychology and Gender and Development; an education which changed her life and gave her a framework to understand her life experiences as a brown, Indo-Trinidad and Tobago woman. The women she met along her journey made her realize she couldn’t live with herself if she didn’t do her part to make this world better. She changed career paths, started working with the UN and has lived and worked in Laos, Nepal, Lebanon, Jerusalem and Liberia on gender issues and peace-building.