The Mighty Logo

The Soundtrack of an Endometriosis Warrior's Cycle

The most helpful emails in health
Browse our free newsletters

Sometimes, only music can speak to the masses to make us feel the emotions that others experience. When you are a woman who struggles with endometriosis, one must find ways to cope with sadness and pain but find inspiration to bring about feelings of hope and humor. That’s where music comes in.

I have found that after letting people know about my disorder, many individuals ask lots of questions. People ask about my back pain that sometimes makes me walk with a limp. They ask about the multiple surgeries I have had to relieve the pain and about the other complications of a disorder that has no real diagnosed cause and no known cure.

Sometimes I have to let people know the gruesome details of my day-to-day issues and sometimes I feel the need to share my life in creative and humorous ways. Lately I have been using the tool of music. It’s the gateway to imagination, to expression and to crossing lines of generations, backgrounds and other barriers.

To help others learn about the different aspects of my journey, I have broken down each day as an endometriosis warrior during my cycle to music titles. From rock to soul, from the ’80s to today’s hits, music talks to us, and it is my way of telling my story of my struggles with my cycle every month.

So you want to learn what I go through as a woman with endometriosis? Look at the following song titles and feel my struggle, pain and hope for making it day-after-day as an endometriosis warrior.

Day 1: “If I Were a Boy” by Beyonce

I promise you that anyone who has this condition finds herself staring at the bedroom ceiling at least once a month, wondering if things would truly be different if she were a boy. A woman can’t help herself — or, at least, I can’t. I wonder if the gender change would make life grander. My mind wanders to the land of imagination, and I puzzle over  whether my health would truly be a different experience if I weren’t a female. If I were a boy, I wouldn’t have to waste so much money on doctor’s appointments. I wouldn’t have to walk around with a supply of maxi pads everywhere I go because I never know when each cycle will start. If I were a boy, I wouldn’t have piles of medical bills year after year; I wouldn’t have to go through embarrassing exams that consist of stirrups, cold hands and awkward conversations about results written on medical charts. If I were a boy, I wouldn’t find myself searching a shelf of medication or flipping the “on” switch of the heating pad to ease the aches and pains of the scar tissue swimming in my body on this first day of dealing with back pain. Day one is the reminder that, once again, I have failed to bear a child and that more pain is on the way. What if I were a boy?

Day 2: “Do You Really Want to Hurt Me?” by Culture Club

By the middle of day two, I have begun to have conversations with my uterus. Yes, I talk to her. There seems to be a lack of communication between the two of us. She wants to do one thing and I want her to behave during this stressful time. I want her to save her issues for after I get out of work, but she decides she doesn’t like the schedule and increases her pain. She, along with her friend endometriosis — who is attached to both our backs — forces me to run to the restroom with a handful of pads because my cycle has gone haywire or makes me grab my abdomen and cringe in discontent. Most of the time, she doesn’t to listen to my complaints and does her own thing, but I find myself asking her the same questions month after month: “Do you really want to hurt me? Do you really want to make me cry?” Most of the time, her answer is, “Yes. My friend endometriosis and I want you to feel that we are uncomfortable and unhappy.” They ask for their other friends, the twin of tubular mayhem and their buddies, angry ovaries, to join in with a vicious war cry. My emotions start to turn into a whirlwind of confusion, and I don’t want to be around anyone. I always seem to be in an argument with my uterus on this day and most of the time, she wins.

Day 3: “A Change Is Gonna Come” by Sam Cooke

In hitting the middle of my cycle, the pain of nature’s process combined with having endometriosis has brought on the feelings of sadness. Many women have depression during their menstrual cycle, but when you add on a condition with no cure, your emotions go into overdrive. I have found that the only thing that helps is trying to focus on hope more than my cramping, need for pills, cravings of foods and the overwhelming beginning stages of nausea. Sometimes I dream of one magical day when there will be a report on the news of progress, of a victory or, as I mainly dream of, a cure. I keep hoping one day someone like me will hear the news that their struggling is over and that their life will be less complicated. But then severe sadness arrives. It’s nothing more than dreaming in my case.

A cure for endometriosis will probably not happen for me due to my age, but I hope that young girls the age I teach will one day hear from a doctor, “Don’t worry, there’s now a cure for your condition.” Many who struggle with this disease become so depressed because others can’t understand how uncomfortable they really are. There is nothing you can do about the condition, and you feel utterly hopeless. On this third day, everything is uncomfortable, and I am surrounded by pain and negative thoughts. There are some points in day three when I just don’t know if I can get up and go on. Sam Cooke best expresses how I sometimes feel when I’m fighting this disease during my cycle:

It’s been too hard living, but I’m afraid to die

‘Cause I don’t know what’s up there, beyond the sky

It’s been a long, a long time coming

But I know a change gonna come, oh yes it is.

I’m going to keep hoping, Mr. Cooke.

Day 4: “Abracadabra” by the Steve Miller Band

By the time I wake up to start day four, I’m dizzy. Severe nausea has arrived too, and chances are, I am throwing up anywhere. I might make it to the toilet, but there have been times I’ve become sick when fresh air hits my face from the outdoors. It happens in the morning as I start my day, and there have been times that I have tossed up my morning muffin in the front yard as my roomie stands by with a look of worry. My head hurts from the nerve pulsing on the side of my head, and I can barely stand most of the time when this day comes in my cycle. If it is not my side where my ovaries are, then it’s the center of my back where the endometriosis has been found time and time again. Then, my abdomen begins to cramp, and I frantically search for pills in my school bag. All of this is happening before 8 a.m. If it is a work day, I struggle in front of my students and worry the gushes of blood will finally reach the point of forcing me to run out of my room in embarrassment. Once I get home, I have no energy left. I want to do the work I need to do for my students, but I just can’t. My flow is so heavy that I have to wear two pads to bed to save my sheets. I’m miserable, and I lay down hoping for some magic that can make everything just seem normal again. I just want someone to say some magic words and make all of this go away.

Day 5: “Stronger” by Kelly Clarkson

What doesn’t kill you makes you stronger

Stand a little taller

Doesn’t mean I’m lonely when I’m alone

What doesn’t kill you makes a fighter

Footsteps even lighter

Day five is when I pray it ends. Sometimes it does, and sometimes it continues for another day or two. At this point, it would be easy to revert to some angry song about oppression and rage that makes me want to punch someone in the throat. That would be the easier way to explain dealing with the last days of your cycle when you have endometriosis. Instead, I make a choice to think positive. I reflect on becoming stronger after completing another week without crumbling. Chronic illness cannot be the thing to destroy you. I have found I have to be strong, stand firm and fight high when it comes to the battles with my body. My cycle and struggles haven’t killed me, despite all the physical, mental and emotional pain I have endured. As I stated before, if you live with endometriosis, you have to be a warrior. So, I stand up as tall as I can and I take on the next day with pride. My footsteps become lighter when I come to an end and have a short time of normalcy.

I never really know when the soundtrack will play again. There are no set days or consistency like other women have with their cycles. It could be a week of rest, or maybe over a month, but it will play again. When the side effects of my illness arrive, I play the soundtrack again in my mind, but I keep on moving and dancing in hopes of surviving each day.

We want to hear your story. Become a Mighty contributor here.

Originally published: October 28, 2016
Want more of The Mighty?
You can find even more stories on our Home page. There, you’ll also find thoughts and questions by our community.
Take Me Home