The Real Cost Of Living With Endometriosis

As long as I can remember having a period, I can remember having pain. It was almost as if one day my body woke up and decided it did not want to work properly anymore. For years, I tried to explain what was happening to my relatives, teachers, and doctors but no one seemed to understand what I was going through. Everyone I spoke to undermined my pain. They told me that my pain was normal and that I was dramatizing and exaggerating my symptoms. It wasn’t until I collapsed unconscious on my bathroom floor that people finally started to take me seriously. Five years and countless doctor visits and emergency room trips later, I was diagnosed with endometriosis at the age of 20. Getting a firm diagnosis meant I was finally properly informed about my health options and my journey towards pain management, and a better quality of life began.

Although endometriosis impacts approximately 1 in 10 (or 176 million women) around the world during their reproductive years, an extensive lack of awareness throughout the current healthcare system means that most women, like myself, struggle with accessing proper treatment. Research shows that it takes women on average 8 years to be properly diagnosed with endometriosis due to a culture “‘normalization” of female pain. 

There are months when I am in pain more days than I am not. This drastically impacts many aspects of my day-to-day life, including my ability to work, the foods I’m able to eat, the products I’m able to use, and what kind of exercise I’m able to do. Learning to manage my endometriosis has been one of the most difficult experiences of my life, but it has also been one of the most rewarding. Listening to and best caring for my body every day has helped me learn to love and appreciate my body for doing the best it can. I’ve made many significant life adjustments which have helped me live a more pain-free life and improve my health overall. Here are four ways I’ve had to adjust my life to better manage my endometriosis:

I work remotely (Since before COVID)

When I graduated, I realized that it would be important for me to try and find a job where I could work remotely so I wouldn’t have to take days off of work when I was in too much pain to go to an office. I strategically looked for career opportunities in my field where working from the office wasn’t mandatory and that offered a work from home option. When I was hired at my current job they, fortunately, let me choose if I wanted to work remotely or be an in-house employee and I quickly chose remote. On days when I am having severe endometriosis pains, I can still get some work done while laying in bed with my heating pad (a.k.a my best friend) and am not forced to miss multiple days of work each month. 

I sleep more than the average person

Due to my chronic pain, I also struggle with intense fatigue and exhaustion. This is something I used to be very embarrassed about because I desperately wanted to be a part of #hustle #sleepwhenimdead #grindneverstops lifestyle that is perpetuated by capitalist culture. I genuinely believed that, in order to be successful, I had to miss out on sleeping. So often, I only slept four or five hours a night. This left me drinking multiple cups of coffee during the day in order to stay awake and ultimately feeling worse because my body wasn’t recovering and I was in more pain. When I started better managing my endometriosis, I learned that I actually need more sleep than average and thrive on about nine hours of sleep a night. When I started sleeping more, ironically, I was able to start #hustling more effectively. More sleep means I’m able to be more productive during the day. My newfound energy has allowed me to see more success in my career and ultimately make more money by being able to pursue other opportunities such as freelance writing. 

I have to follow a very strict diet 

There is a lot of research that shows the connection between diet and endometriosis pains. Personally, I have been able to significantly improve my pain levels by adopting an anti-inflammatory diet and cutting out many harmful foods such as dairy, meat, and gluten. I make sure that each week my diet is full of vegetables, fruits, fish, grains, and beans, and other organic, whole, plant-based foods. Adopting this diet does prevent me from doing things I previously loved doing such as eating fast food, going out for drinks with friends, and getting ice cream in the summer. Consistently eating whole and healthy foods might be more expensive, but it significantly decreases my pain levels and increase my overall quality of life. 

I have to be careful when trying new things or changing my lifestyle 

In March 2020 when the COVID – 19 pandemic first began and gyms closed down, I decided to take up running. I have never really been into running and looked forward to the opportunity to try a new type of exercise that would challenge me mentally and physically. The morning after my third run, I woke up with how I would describe “debilitating” endometriosis pain that would keep me bedridden for the next few days. It became apparent to me that my lifestyle change had caused me to have a severe endometriosis flare up and that running was too hard on my body. My flare up eventually caused me to grow and rupture a complex cyst on my ovary and resulted in my spending the next few weeks in and out of the hospital. Having endometriosis means that my body, unfortunately, can’t accommodate trying new exercises which are fun and challenging and other lifestyle changes. Now that gyms have opened back up, I have been able to resume keeping my regular gym routine, which allows me the freedom to change my workout with the changing capacity of my body.

*****

This disregard for pelvic pain and other female reproductive health issues reveals a deep history of systematic sexism and gender bias and injustice within the healthcare system that hurts and harms women. While I have made many adjustments in my life to better manage and accommodate my pain it is something that negatively impacts my life every day. I would like to continue to use my story to bring awareness to female health issues and advocate for more research and treatment options for pelvic pain and general female health issues.  

Domunique is a full-time communications manager who is interested in finance, health and wellness, pop-culture, and community service. You can follow her on Instagram @domuniquelashay. 

Image via Pexels

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