The devil inside me: endometriosis

The interviewee of this piece wishes to remain anonymous. For the purpose of this story, I will refer to her as Ella. 

Fear. Pain. Insecurity. Anxiety. Lack of confidence. Exhaustion. These are the words Ella used to describe her chronic medical condition, Endometriosis. The Google definition of Endometriosis is: “A disorder in which tissue that normally lines the uterus grows outside the uterus.” 

In May of 2022, Ella graduated with a nursing degree from a quality university in New England. She admired her program. It taught her how to think about people from a new perspective and it shaped her into the woman she is today. She thrived academically, but college had its challenges, especially with her condition. 

“A lot of fear would come into my life about when a flare-up would happen. I always worried I wouldn’t be able to perform my best. School was really difficult. Nursing students need to take care of themselves, but I could never take time off when I would have a flare-up because my program was so rigorous.” 

A condition like Endometriosis can be debilitating. Especially when the pressures of academics and work come into play. At 22, Ella has already had three procedures and one surgery on her uterus. Her gynecologist believes she will need more. Ella has even considered freezing her eggs, since she may have trouble getting pregnant in the future. Her mother had several miscarriages. 

“One time in the hospital when I was doing clinical in pediatrics, I couldn’t pick up some of my patients because I was hurting so much. My school didn’t understand my need to take some time. They just told me to keep going.” 

People tell women in pain to keep going like it’s normal. All the time. It would’ve been easier for Ella to move forward if America’s healthcare insurance actually made a difference. When Ella began her freshman year in college, her gynecologist proposed the use of a promising medication, Orlissa. Relieved and excited, she reached out to her insurance company. Her hopes were immediately shattered. 

$40,000. $40,000 a year for Orlissa. Are you (sorry) fucking joking? $40,000 a year for the only Endometriosis specific medication in the entire world? The only medication that could help Ella and her condition that so evidently affects her everyday life. She and her family could not afford it. 

“When I started junior year of college we tried to get the pill again. It was still going to be $20,000. I wrote all these appeals and they brought it down to $13,000. Still couldn’t do it. My gynecologist reached out to the medication distributor. Now I pay $3,000 a year and am finally on Orlissa. Which is still not ideal, but doable.” 

Are these seriously the steps needed to take to live comfortably as a woman? With a medical condition she can’t control? In America, apparently so. Coupled with the insurance battle, the mental hill one has to climb when dealing with such a condition is nearly unbearable. In Ella’s personal life, she noted insecurity when it comes to sex and relationships. 

“Sex is very painful for me. At the time, I had a really understanding partner. In previous relationships, I did not. Sometimes I wouldn’t be able to have sex for weeks and my partner would go out and cheat on me multiple times. My flare-ups always led to cheating. Now I’m scared and so anxious. Just another layer of insecurity because of my Endometriosis.” 

Ella’s story is filled with pain, but she is an undeniable warrior. A woman. A nurse. A loyal partner and friend. She fills her life with uplifting and supportive people, and in return uplifts herself. She is an advocate.

I asked Ella if she has any advice for other women and girls in the world, she eloquently said:

“Invest in yourself. It’s the most valuable thing you can do in life. Women aren’t supposed to have debilitating cramps. Your period is not supposed to wipe you out. It’s not normal to be in pain like that. If there is a professional or staff member who doesn’t get it, take it to a higher level of staff in your community. Advocate for yourself. Remove bad people from your life. People should be more understanding.”

Image Sources:

Alzate, Jairo. (2015, November 16) No Title. JPG. https://unsplash.com/photos/1CsfTx0DuLs. Free to use under the Unsplash License.

Annonymous. (2022, October 4). Personal communication [Phone Interview].

@thoughtcataglog. (2018, March 2) Health & Wellness. JPG. http://www.quotecatalog.com. Free to use under the Unsplash License.