Endometriosis is a chronic inflammatory disease affecting the uterus. Up to 10% of of women & girls in their reproductive years worldwide suffer from the disease, according to the World Health Organization and yet it often goes undiagnosed and untreated.
Rachel Penny, a Canada-based esthetician and endometriosis advocate, shares the story of her journey with the disease, including the years she suffered without a diagnosis and what inspires her to advocacy now.
Hello ! My name is Rachel Penny and I am an Endo Warrior.
My journey through endometriosis began when I was diagnosed in 2020. To the best of my knowledge, research and memory I have been living with this disease for around 10 years.
I have made a conscious effort towards raising awareness and sharing my personal journey with endometriosis, so much in fact that it has become a passion of mine. I have strong hopes of building a much larger, stronger community to be able to create support for those who may be living with this disease in silence.
This is my story.
Debilitating cramps, along with other uncomfortable symptoms, have had me sent home from school and miss countless days of work.
Canceling plans with friends and family became a frequent situation for me. I thought this was normal, and because everyone experiences pain differently I figured my situation wasn’t any different from that of any other girl around me.
I hid my pain and regretfully didn’t seek help for years, thinking that if I spoke up I wouldn’t be taken seriously. Unfortunately I was right.
Finally, after speaking up and trying to seek more information about my pain, I was given the runaround by multiple doctors. I was left in hospital beds for hours with no answers to my unsolved questions--I was even told that “this was just part of being a woman."
Approximately 7 years, 6 doctors, and multiple ER visits later, I finally heard the word ‘endometriosis.' I eventually found myself sitting in front of an ER doctor who asked me if I had ever heard of this disease.
This ER doctor then made contact with my family doctor who referred me to a specialist. And just like that the ball started rolling.
During the time I waited to see the specialist, I had also been diagnosed with IBS and interstitial cystitis. Which I later found out are sister illnesses to endometriosis.
I had begun diving into my own research at this point and read a few articles and books on endo. Among many eye-opening takeaways, I learned that 1 out of every 10 women battle this disease. That's far too many of us to have such little information, in my humble opinion.
When the day finally came and I had done all my testing, my specialist read out every symptom of mine that I had been experiencing for the past 7 years.
It felt liberating to hear her diagnose me with endometriosis–to be reassured that I wasn't crazy, that my pain was real and that I should have had answers earlier and was deserving of better care from the medical system.
I was happy to have this knowledge, but also devastated for all the women who have waited even longer for answers. To be seen by the right health care professional isn't always easy.
There unfortunately aren’t enough resources available and, with the average endometriosis diagnosis taking 6 to 10 years, this is the reality for many of us. My hope for those who are waiting on answers is that you don't give up.
Be your own advocate for your health and seek the care and treatments you deserve. Do not take no for an answer, because regardless of your sex you deserve to have your health and wellbeing validated.
The list of things I have done for pain management before and after diagnosis is what really helped me develop a self-care routine and learn to manage my pain to some degree.
I have tried medications for my pain, but personally I didn't do well on them. I do get chronic flare ups from time to time, I still have heavy cycles but my pain levels are better managed with acupuncture, naturopathic medicine, my heating pad of course, a strict diet, lots of rest and not pushing my body beyond its limits.
It’s taken a lot of self discipline, and at times it has been tough to keep up a good routine, but I am currently in a space where for the majority of the time I feel good.
Becoming an advocate for my health was one of the most rewarding things I've done in my life.
Aside from teaching me a whole lot about myself, it also gave me a huge confidence boost.
I stood up for myself and I am really proud of that. I want all Endo Warriors to be able to feel that feeling of self-discovery and self-confidence.
Writing about my experience on social media has connected me with a community of inspiring individuals who are also creating a voice for all of us fighting this disease. The power in this community of Endo Warriors has brought a great sense of home for me.
image: rachel penny
You can find Rachel on Instagram @hello.miss.penny