My journey with endometriosis begins over 2 decades ago. I can barely remember a time when I wasn't in pain or fighting with my body in some way.

 

I started my period in November of 1999. Within just a few months, they became seriously painful periods. I was told by our family doctor that this is normal, even though I'd have to stay home from school and sometimes even faint from pain. I was now 11 years old. But to "treat" the symptoms of especially painful periods, doctors regularly suggested that you put the kid on birth control pills. So that's what we did. I've never been off synthetic hormones for more than a few months at a time since then.

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Throughout middle and high school, I'd have physical abdominal flare ups regularly, drastic weigh gains/losses daily, terrible constipation, wild mood swings and awful fatigue.

 

I never quite understood how abnormal it was to feel like I'd never slept before in my life after a simple trip to the mall.

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In 2007, I graduated high school. I attended classes and lived in the dorms at Eastern Michigan University, where I attempted to get my diet in order. I tried food process of elimination for a while, more exercise, even green tea pills to help speed up my metabolism. I did lose some weight but I was only cutting out certain junk foods *some* days of the week. Plus, no one really prepares you for the fact that college marching band is, in fact, a grueling physical sport.

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Fast forward a few years to 2010 - I get my first music industry job as a wedding/corporate lead vocalist in the Metro Detroit group, The Dan Rafferty Band. Not only that, I was working at a bar, attending classes in my third year (of four total), still in marching band with regular rehearsals and football games, and now I have to pivot to being a professional vocalist. I knew I had to *seriously* change how I handle my body at this point. I'd already ended up in the E.R. twice since I'd gone to college, only to wait there for hours and be told that all my tests look "normal". The pain would be so severe that I thought maybe I had appendicitis or something. But nope.

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I continued with my food process of elimination and, unfortunately, this meant running off stage during sets because of explosive diarrhea. I discovered butter and milk were causing HUGE digestive problems for me within a few months of the process. And guess what's served on every plate at every event that we played? Mashed potatoes (which are mostly milk and butter)! But I could seemingly still eat any dairy-free meat or vegetable. That's still true to this day! I figured I may have developed some type of lactose intolerance, but it wasn't as simple as that.

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It was sometime in 2011 that I finally went to my family doctor and mentioned that I felt something was seriously wrong inside my body, but that I had nowhere to begin in terms of trying to figure it out. She looked at me - I will NEVER forget her exact words - and said, "You're 22! You're too young to have anything wrong with you!"

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And in 2 months, I would end up in the E.R. due to a cyst that'd been growing inside my right ovary for {probably} years.

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When I tell you these E.R. nurses looked at me like I was CRAZY for performing with a golf ball sized cyst in my ovary, I'm not over-exaggerating. Much to my boss' chagrin, I was ordered to take a few weeks off from gigging so I could make an action plan with my doctors. But the joke was on me because I did not switch doctors at this time. I thought maybe she'd come around now that there was clinical proof that something was wrong with me! But all she did was tell me to switch up my birth control pills and go to the E.R. or an Urgent Care facility if the pain got too unmanageable.

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(It's worth noting that my paternal aunt had something extremely similar happen only a few years prior. She had a golf ball sized cyst near her intestines and as a result, there was a serious blockage. She had immediate emergency surgery to remove the cyst and part of her intestines. She was also diagnosed with endometriosis during that surgery. Multiple years later, I was informed that my paternal grandmother also had endometriosis removed at the time of her hysterectomy in the 90s. Endometriosis can be passed genetically.)

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So at this point, I'm thinking the change of birth control might shrink this cyst because that's what my doctor told me. During the next 10 months, I had ultrasounds, both abdominal and trans-vaginal, every 2-3 months. These caused multiple-day flare ups as a result, but my doctor was able to keep an eye on the cyst's growth.

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In January of 2013, there was a giant red flag. My ultrasound results were not simply sent into the MyChart digital portal; I was called by the office to make a next day appointment.

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I knew something was very wrong even without the ultrasounds telling me that. So I went in and my doctor told me the cyst had grown to the size of a small grapefruit and we needed to schedule surgical removal as quickly as possible. I also needed blood tests prior to this. (By the way, I never saw this doctor again after this visit.)

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These blood tests would show abnormal levels that indicated I could potentially have cancerous cells in my pelvic lymph nodes, so not only did I have to have the cyst removed, I'd need to meet with an oncologist prior to the surgery and have them present at my surgery as well.

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Before my surgery, I had about 3 weeks to find a new doctor. I started going to a doctor who actually listened to my concerns and gave me REAL options instead of just thinking I'm hysterical for some reason. I told her that my surgeon suspected endometriosis and so she said I should just treat my body as if I have it until it's confirmed.

 

I started doing the research, found TONS of Facebook support groups, and I changed everything about my life. I cut out dairy, sugar, chemicals, preservatives and alcohol from my diet almost entirely. I started buying only organic produce and exclusively shopping at Whole Foods. I started making sure I'd take one day a week off to do exactly nothing but rest. And it all helped A LOT.

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And then, those few weeks later, at age 24, I signed papers stating that if they found cancer in any of my reproductive organs, they could remove those organs. If they did find any cancer, I'd probably have to continue treatment regardless of removal. This particular surgeon did suspect endometriosis present as well, but endometriosis is only able to be diagnosed via surgical methods. So while they were removing my cyst, it burst, but they were ready. They handled this surgery fantastically and NO CANCER WAS FOUND. They took a look around to confirm endometriosis and what they found was a mid-level amount that spanned from my pelvic floor all the way to my diaphragm. They also did a dye test in my fallopian tubes to gauge my fertility.

 

This is the real kicker - my right ovary (the one with the cyst in it) was probably never going to be able to recover eggs again but the fallopian tube attached was healthy. My left ovary seemed to be fully functional and healthy but the fallopian tube attached was completely crushed by the endometriosis. My surgeon told me there was a very low chance I'd ever get pregnant naturally.

 

That was February 22, 2013.

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My recovery was successful and I learned how to live my life again, but with SO MUCH MORE knowledge. Year after year, I find I have to rest more and more, and give up more types of foods. I suspect my endometriosis has grown immensely since 2013. But doctors simply will not cut a person open unless they're in a fatal condition. I do understand this, but with a disease like endo, you'd think being proactive 10 years after my initial surgical diagnosis might be acceptable. Alas, that's not the way our healthcare system works.

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Even though the healthcare system is nothing but road blocks, what I can do is push for yearly ultrasounds to check on cyst growth. I have to pay out of pocket but it helps me sleep a little better at night knowing what's going on in my body.

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I am still on synthetic hormones and probably will be for the entirety of my life, uterus or not. For me, IUDs and a strict diet seem to be the best band-aid for pain management. But let me be clear - there is no actual cure for endometriosis. Nothing stops the growth of endometriosis and there are no medicines or treatments for this disease; only pain management.

 

The only "cure" is excision or ablation surgery of all endometriosis lesions on all/any organs they are attached to AND a full hysterectomy. Our health care system {mostly} won't do this until a person is over 40 years old. Having both of these surgeries forces the patient into medical menopause, which is a whole separate and dangerous part of that to consider. So it's understandable to a certain extent. If you *can* survive without these surgeries, you have to try to make do. But that's the hard part. Quality of life is rarely ever considered a part of this. You're either alive or you're dead. Nothing in the middle seems to matter.

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I learned at such a young age to advocate for myself that I don't think I'll ever go back to being silent or docile about the topics I'm passionate about. If I'd continued going to that original doctor, I could've died. Hell, I could've died BECAUSE she didn't take any real action a whole year prior to my surgery. I think about that almost every day. And if reliving this every time I tell the story helps even ONE person learn how to advocate for themselves, it's all worth it.

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