endo warrior wednesday: my endometriosis story
March is coming to close and I thought the best way to finish up Endometriosis Awareness Month would be to share my story because what better way to raise awareness than to talk about it.
Women’s health issues are notoriously under represented. Let’s get a little uncomfortable (seriously, putting this on the internet is giving me major anxiety) and dive into my endometriosis story.
I began menses at the age of 11. They started out extremely light and fairly regular. I didn’t experience any cramping or fatigue or changes in mood. I just went about my business for many years. In high school, things started to change. My periods got heavier. They became irregular. I started experiencing cramps, headaches, and fatigue. They became longer. They would disappear and return two or three days later at high flow.
These changes and irregularities were chalked up to the normal unpredictability of menstruation in a female teenager. I went to school armed with ibuprofen, a huge supply of sanitary products, and a sweatshirt to wrap around my waist for the inevitable leak. I ruined a lot of underwear. I ruined a lot of sheets. Eventually, my mom bought a plastic cover for my bed because I was ruining the mattress.
I avoided sleep overs and borrowing my friends clothes. When I had to wear my field hockey skirt to school on game days, I had to wear a pair of jeans or leggings underneath because I couldn’t bare the the thought of wearing just a skirt on my period. I skipped swim team practices because tampons weren’t enough and feared being caught with blood running down my legs. Things weren’t horrible but they certainly weren’t great. I believed it when doctors said that this was normal and I would grow out of it.
When I got to college, things took a turn. I did not grow out of it and my symptoms only got worse.
In addition cramps during my period and intermittent, sharp abdominal pain that came and went all month long, I experienced excruciating pain during sex. Pain so bad that I avoided sex at all costs. I knew something was wrong but I was so ashamed and so embarrassed that I couldn’t bring myself to tell my doctor it was happening. I didn’t tell anyone.
I thought I was broken. I thought I was made wrong. I thought God hated me. I thought I was a freak. I buried this all inside and carried it around believing that I was a failure of a women.
I had an uncontrollable feeling that my body was my biggest enemy. I spent 7-10 days a month either being so sick with cramps and nausea or so anxious and depressed that I couldn’t get out of bed. I missed exams. I forgot to turn in homework. I skipped class to lay on the couch with a heating pad or submerge myself in scalding hot bath water to ease my pain.
When I could make it class during my period, I would often have to get up during longer lectures to go to the bathroom and check for leaks. I walked around with my backpack swung low across my hips because I could never be 100% sure that I hadn’t had a whoopsies.
Besides abdominal pain, I experienced lower back pain, chest pain, fatigue, headaches, and digestion issues.
Eventually, I went to the campus health center and was placed on birth control. 3 months later, nothing had changed so I switched birth control. This pattern continued for a year and half. I still had no relief and things had gotten so bad that I was failing out of school.
I was forced to go to the school psychologist to discuss why I was doing so horribly. I was placed on a stimulant for ADHD and an anti-depressant. I was referred to a gastroenterologist for my stomach pain and diagnosed with irritable bowel syndrome and started on a regimen to manage that.
I had no idea how to advocate for myself. My parents were hundreds of miles away and in the middle of some serious life changes. I felt like burden and a disappointment and I want so desperately to disappear forever. So, I tried. I tried these medications and I went to weekly therapy sessions at the campus health center.
I felt worse than ever. Let’s just say...stimulants and I don’t get along. My anxiety went through the roof. I felt disassociated from my actions. I turned into a monster I didn’t even recognize. I began to feel like the world would be a better place without me. I imagined my friends and family living significantly better lives when I was gone. I imagined how relieved my parents would be not to have to deal with my moods and my outbursts and my inability to pass a single class. I imagined how my sister would finally get the attention she deserved because I knew how much of my parents time I took up on a daily basis.
I was 19 years old and I wanted to die. I beat myself up for being too much of a wuss to actually do something about it. I felt guilty because I existed.
The summer between, sophomore and junior year, I went home. I was so behind in my coursework that I had to take a full semester at a local university in an effort to catch up. Before classes started, my mom got me an appointment with her gynecologist.
At this point, I was on birth control number 4 with no results. I went for a full exam including a transvaginal ultrasound. This was the first time that someone gave me an actual pelvic exam after hearing about my symptoms and it turns out something wasn’t quite right. On the ultrasound, the doctor could see that my uterine lining was abnormally thick and there were some small cysts on my ovaries. She was the first person I felt safe enough to divulge the true extent of my symptoms to. She was the first person to say the word “endometriosis” to me.
She asked me to go home and do some research on endometriosis. For the first time in two years, I wasn’t alone. There were women out there experiencing the same things I was and there was treatment option that was having real, sustainable results...an interuterine device (IUD) called Mirena.
I made another appointment with the gynecologist and got an IUD placed a few weeks later. At the time, there was no evidence for using an IUD in a women who hadn’t had a pregnancy yet but I was willing to try it anyways.
My next few cycles came and passed without major incidents. My mood improved, my pain was drastically improved, and my flow diminished. I felt like I could breathe for the first time in years. Not only did I pass all my summer classes but I got straight As. I was able to get off of all my other medications. I felt normal for the first time in a long time.
I returned to school that fall a new human. I wasn’t in constant pain anymore. I didn’t hate my body or myself. I went from failing out of school to the Dean’s List. I started researching graduate school. I started acting in campus productions. I felt alive and I felt whole.
I still struggled with anxiety. I still had bad days. I still had occasional pain and discomfort but suddenly, life was worth living. I graduated with my bachelors and then my doctoral degree. I found a passion for acting and theater. And I laughed…a lot.
Nearly 12 years later, I still have symptoms of endometriosis and I still have not had the definitively diagnostic laparoscopic surgery (because I have chosen not to undergo the procedure at this point). I still have an IUD. I have bad days sometimes.
But I’m able to hold a steady job in a field I love. I have deep friendships and a beautiful partnership, with Thomas. I’m a dog mom and a home owner. I know how to support myself through the hard days. I know when I need help. I owe so much to that doctor that finally listened to me and heard me. The one who saw the cluster of symptoms and took a chance on an off-label treatment.
I know my story isn’t over. I know I will someday trial removing my IUD in hopes of getting pregnant. I know that time will be hard and I will need a lot of support from my family and partner. I know there is a possibility that I can’t get pregnant but I know now that I’m not alone.
And if you’re experiencing symptoms of endometriosis, you're not alone either. It doesn’t have to be the end of the road. There is a treatment or combination of treatments that will work for you. Do your research and have open and honest discussions with your doctor. Listen to your provider and ask questions. Be bold in your self-advocacy. Don’t be afraid to turn down treatment options that don’t seem right for you but don’t be afraid to try things that you hadn’t considered, either.
Rest when you need rest. Cry when you need to cry. Say no when you need to say no. You are more than this disease.
If you enjoyed this post or want to learn more about endometriosis, visit my other Endometriosis Awareness Month posts, here.
Thank you for reading with an open mind and open heart. If you are struggling with your health, I am here for you.
With love, Lauren