Ok Y’all. It’s time.
It took 19 years for me to realize that women’s health isn’t “gross” or “inappropriate” and that I should not be ashamed of my story. Our society idolizes the outward appearance of a perfect female body, but when a word like “endometriosis” comes up, we all run and hide. Not being open about the severe health problems I’ve been battling for the past five years in order to protect the innocence and comfort levels of others is something I regret.
One day in February 2011, I woke up feeling severely ill, and I’ve been severely ill every day of my life since then. I was robbed of my childhood at the age of 14 when I was diagnosed with a severe chronic illness called endometriosis. I ask that you don’t google the term or talk to a doctor to find out what this illness is, but instead that you would embrace my story.
Chapter 1. What is endometriosis?
I could write an entire book, in fact I probably will someday, about how I HATE answering this question. I hate explaining what is going on inside my body and using words that make people uncomfortable. I hate having to condense the details of a very complicated disease in to a sentence or two during small talk. But most of all, I hate saying “I have endometriosis” because that often results in misunderstandings about the severity of my condition. This illness is very common in women, but levels of severity vary greatly. My story is a lot different than the girl you know who has this but can still go to school and work everyday, or can take an over-the-counter pain killer and get on with her day. There are so many statistics that go along with endometriosis, but it’s time to STOP focusing on the statistics and START focusing on the stories.
Endometriosis is a severe illness found in nearly 10% of women. During normal menstruation, the lining of the uterus sheds and it exits the body. In women with endometriosis, this tissue grows and spreads to other areas of the body including ovaries, bowel, bladder, pelvic area, fallopian tubes, cervix, and even lungs and the brain. Unlike the “normal” tissue, this tissue has no way of leaving the body, and can result in internal bleeding, cysts, inflammation, scarring, and adhesions. The primary symptom of this is severe pelvic pain, usually associated with menstruation, but in some cases like mine, this pain as well as other pains and symptoms are constant throughout the entire month. Severity and frequency of pain varies greatly among the millions of women with this illness, and does not correlate with the stages of the disease, which is partially why it is hard for people to understand and take this condition seriously.
Endometriosis is not terminal. It isn’t going to take your life, but (in cases like mine) it is going to keep you from really living. You have to work twice as hard for half the success of a non-sick person, even in the small everyday tasks.
The Center for Endometriosis Care states:
Endometriosis has the potential to disrupt every aspect of an affected individual’s life; from physical, mental, social and emotional health to interpersonal relationships, career and academic opportunities, infertility/pregnancy loss, sexual pain/dysfunction and more. Often invalidated and ignored by medical and lay society alike, many struggle with the disease in silence.
Chapter 2: My story in a nutshell
You could argue that my story begins in 1996, since endometriosis is a condition that you are born with, or that it begins when I was ten and started my period and was in pain for a few days each month, but I’m going to jump to February 2011. I was 14, in the 8th grade, and did not realize how much my life was about to change. One morning I woke up and had severe cramps and overall body aches, so I stayed home from school.Not just for a day, but for about a month. My mom researched my symptoms, talked to several doctors, and took me to a few different gynecologists and it became reasonable to assume that I had endometriosis, although the only way to diagnose the disease is through surgery, and since there aren’t any excellent ways to treat this illness, we didn’t rush on the surgery.
I went back to school, but not on a regular basis. I would show up for a day or two, then miss for a week or two or sometimes months. Sometimes I would go to school for only an hour and it would be a huge victory. I had to take a lot of crap from teachers, students, and other faculty, but I was too sick to care about anything other than getting by.
On July 12, 2011, I was officially diagnosed with endometriosis via laparoscopic surgery.
A candid moment with my family after my first endo surgery. Please find humor in the fact that I look like a thumb.
I started high school a few months later, and thought that I had been doing much better (thanks to lots of rest over the summer, and a great prognosis). However, it was the same story. I missed at least one day of school each week, but usually more and often multiple weeks at a time. I kept up with my work, communicating with my teachers and having my brother turn in my homework every day, and I was getting A’s and B’s despite teaching myself. In November of my freshman year, I was given the message that I was an inconvenience to the education system, and since I would not be able to be successful in college or in a job, that I should just drop out of school. I went on medical leave to finish the semester up at home, but when January came around I fought for my legal right to go back to public school and be educated without discrimination for my health. So I finished out the year, severely ill and in unbearable pain each day, still missing unbelievable amounts of school at a time. It wasn’t until my sophomore year (after I switched to a small, private, Christian school) that I attended a full 5-day week of school (but even that wasn’t “full” because I started my classes 3rd hour). My parents rejoiced and bought me presents and wrote me cards and it was a huge deal. I let my hopes shoot up so high in moments like this, but my health was still unpredictable and consuming my life. And soon after this I got worse. I went to several local doctors, then branched out to doctors in other cities, but no one could figure out how to help me.
On January 28, 2013, I traveled from my hometown of Grand Rapids Michigan to Atlanta Georgia to see one of the few endometriosis specialists in the world, Dr. Kenny Sinervo. That required a 12 hour trip, lots of negotiating with insurance companies for out of state procedures, and a recovery that was so long, but so normal in relation to the pain and sickness I had every day anyway. He performed laparoscopic excision surgery on me, which, although it is NOT a cure for endometriosis, typically results in no recurrence or growth of endo in 93% of cases.
But I was in the 7%.
Recovering in Atlanta with my stuffed animal support system.
I went back to Atlanta to see him again less than a year later because I was still in unbearable pain every day and getting worse and worse. He discovered that my rare case of endometriosis had come back, grown, and even spread to my bladder. He performed another surgery, which I think did help overall, but I am still experiencing severe pain every day 2 years later.
Atlanta Surgery Round 2
I missed about 4-5 months of school with each surgery, but that was normal now, and I was managing to keep up and maintain decent grades.
When I went back to school in the spring of my junior year, I did not feel welcomed back. The year before when I had surgery everyone was so relieved because they thought it would fix me and I wouldn’t be a burden on their education system any more, but this time they were done with it. To be fair, this school was a lot nicer than my first high school when they kicked me out. They even let me fight back a few times, but eventually I gave in and decided it would be best for me to do my senior year online.
I graduated a semester earlier than I would have in a normal school setting, pushing through the pain each day.
I never got to wear a cap and gown or go to a school dance or basically any social events in high school. I missed well over 100 days of school every year from 8th to 11th grade. I spent my 15th birthday in the hospital having a procedure. My 16th birthday I had to leave school because I passed out in the office due to unbearable pain. The week of my 17th birthday I went on medical leave from school for 4 months. My 18th birthday was scary because I realized I now have to talk to doctors by myself like a grown up. My 19th birthday I spent in my dorm by myself and did not interact with other human beings. But I do know this: God is so good. He has done and will continue to do amazing things in my life through all the pain and brokenness I have felt, and I feel so blessed to have Jesus as my rock and my hope.
“For I consider that the sufferings of this present time are not worthy to be compared with the glory that is to be revealed to us.” – Romans 8:18
There will be a day, Y’all, when I will be free from pain and I will see Jesus face to face. But until then, I am not called to live a “normal” life.
I also have been diagnosed with adenomyosis and polycystic ovarian syndrome, which are both in the same family as endometriosis. Adenomyosis is when the uterine tissue grows in to the uterine wall and this causes a lot of severe overall body pain as well. Polycystic ovarian syndrome is a hormonal disorder causing enlarged ovaries and lots of cysts. Both of these as well as endo are extremely hard to diagnose and treat.
Chapter 3. A brief note on my treatments
By my 18th birthday I had lost count of the amount of birth control pills I had been given (And for the record I was very much a virgin). These hormonal methods are often used to treat endo, however I reacted to pretty much every kind in a severe way that affected my ability to live and made my pain and sickness worse. You know those rumors that those pills make you have painless periods and clear skin? Not true for everyone.
I am allergic to Motrin, Advil, Midol, and all NSAIDS. I’ve tried Tylenol and Aleve enough to know that they don’t do anything for this kind of pain. I’ve tried Toradol, Tramadol, Naproxen, and more and have had terrible reactions to all of them.
I laugh and roll my eyes a little bit whenever someone tells a story about how they took Vicodin or morphine or dilaudid once and acted really weird because those are my normal. My go-to prescription drugs. I may or may not have taken a (prescribed for pain) morphine the day of my ACT, so your “one time when I was on morphine” stories are not fascinating to me.
I also take a lot of vitamins, work with diet, and use organic products and food as often as I can.
I have special medicine patches that I wear on my feet when they are killing me which is basically all the time.
I’ve tried things like acupuncture and mayan massage, but I did not commit to them long enough to notice a difference due to other complications.
I have two different portable machines that you may sometimes see me wearing. They look like tape recorders or really old walk mans and not medical equipment. In other words, please don’t throw snowballs at me because I wear electronic medical equipment and that could be dangerous.
Two portable machines attached to my abdomen to help with pelvic pain.
Chapter 4. What is normal for me?
While my condition is unpredictable and symptoms are changing all the time, a normal day for me consists of really severe pelvic/uterine cramps, sharp stabbing pain in both ovaries that worsens when I walk or sneeze or laugh or move, overall body aches and severe shooting pain in my arms all the way down to my finger tips as well as from my back all the way down to my toes. This pain is constant and it leaves me feeling fatigue all the time. I’m never not feeling like I was run over by a bus.
Vital Health Institute stated in regards to endometriosis,
“Grinding fatigue as severe as that experienced with advanced cancer is present in most cases”
I also get severely nauseas, like that horrible feeling you have right before you throw up (only I rarely actually do throw up, so it’s just a lingering pain). This happens every morning and usually goes away around 3:00 in the afternoon, and sometimes comes back at night.
I get severe migraines to the point where I can’t handle light or sound or smells.
And don’t even get me started on insomnia, because I’ve had that since I was an infant. But it’s so hard to fall asleep at night when I feel like this, no matter how exhausted and fatigue I may be. The anxiety of not knowing what my pain or sickness will be like the next day haunts me each night.
Chapter 5. What they say.
I’ve been told that this isn’t a real illness because it’s not that bad and so many women have it.
I’ve been told that I am not allowed to talk about it because it’s inappropriate to say things like uterus and ovaries.
I’ve been told to shut up because what is happening in my body is gross and makes boys (and girls) uncomfortable.
I’ve been laughed at (literally) because people think I’m joking when I say I’ve been sick every day for five years.
I’ve been questioned and accused by my peers and classmates who believed I was faking something to get attention.
I’ve been told by my principal that all I needed was an attitude adjustment and then I would be healthy enough to come to school.
I’ve been told that it’s all in my head.
I’ve been told “I have really bad periods too”
I’ve been told “My periods are so bad that I have to miss school sometimes”
I’ve been told “You should just sit with a heating pad and take a midol, that’s what I do”
I’ve been told, “yeah right” when I tell people about my medications
I’ve been told “Get better soon” even though this illness is chronic.
I’ve been told “I wish I had that then I could stay in bed all day like you”
I’ve been told “Aren’t you feeling better yet? How can you still be sick/in pain?”
I’ve been told “My parents would never let me stay home from school for just cramps”
I’ve been told that I was fine when I wasn’t.
I’ve been told I don’t look sick
But I was never told that it was ok to share my story, until I went to college and found a few people I could be truly vulnerable with.
Chapter 6. How this affects me mentally.
You never really get used to a pain like the one that lingers with severe endometriosis, but other people get used to it for you. When they hear about it the first time there’s a little bit of sympathy, but it shortly becomes the norm. It’s easy for people to forget, and I don’t blame them because I do a pretty stellar job at masking the pain and sickness.
It’s so hard to fully be there in the moment. I can’t ignore the fact that my entire body is consumed with pain every second of every day, and that gives me the disadvantage of not being able to live life to the fullest.
I’ve really struggled with making and keeping friends due to being so mysteriously ill, canceling last minute because of severe flare-ups, and just being a bore because my body is so weak.
The truth is, I think we all long to be understood in whatever trials we are facing. I know I do. It’s lonely suffering in silence, and its really hard to break that silence when people have already seen you laugh or dance or do something cool. Once you give people the impression that you’re a normal person and you’re doing just fine, there’s no escaping that, and it’s really hard for them to envision your pain. I think everyone can relate to this on some level.
Right now, I am a freshman at Belmont University, my dream college. Despite not looking sick enough to have disability accommodations, I have priority scheduling, which allows me to balance my schedule and pace myself a little differently than a normal student. I have my own room to limit my exposure to other people, noises, germs, and other various things that trigger or make my illness more difficult.
On my beautiful campus with my beautiful mother
It has been a blessing and a curse to move to a new town where no one knows anything about my medical problems. I am meeting tons of people, but it’s challenging not being able to explain certain things about myself. My first semester was brutal in terms of my social life. When I was not in class, I was in my room by myself. Most weekends, I would stay in my room from Thursday night to Monday afternoon when I had class. I felt like everyone was making friends and doing cool things and I was sitting in bed praying that my ovaries don’t fall off and wondering who would be there for me if they did.
If you take anything away from my story, let it be this:
There is a lot of invisibility in this world. Invisible illnesses, and other things that people may be going through that our eyes don’t see are more common than we want to believe. Please stop judging people for medical (physical or mental) issues that seem small. That kid that missed a month of school for “the flu” in 8th grade might actually be fighting a bigger battle.
Also, in a time where we are promoting a positive outward body image, especially for young girls, let’s consider the inside parts of your body as well. It’s time to stop shaming girls for wearing tank tops and shorts, but it’s also time to stop shaming them from speaking out about endometriosis.
And that is why my story needs to be shared. And talked about. And celebrated. I am done suffering in silence, and I am ready to take off the mask.
In His Grace,