March is endometriosis awareness month, and, seeing as I’m sitting here in pain because of my endo, I figured this was the perfect time to write about my journey with it.
Endometriosis, lovingly called endo, is a condition where the lining that is supposed to grow inside of your uterus grows somewhere outside of the uterus. Then, when once a month the lining sheds, it causes immense pain. Endo also causes a God-awful amount of bleeding during your period, can cause infertility, and can make sex painful. This disease is no joke, and it affects 1 in 10 people with uteruses. There is no cure, and it can keep growing back even after surgery to remove it.
We suspect that I first started developing endo when I was six years old. I was sitting in my first-grade class, and I began to experience severe pain around where my left ovary is. I began to cry and went to the nurse in what she would later describe as the worst pain she’s ever seen me in. Being six, we just assumed it was a chronic gas bubble that I got and began to treat it with antacids, and, thanks to the Placebo Effect, this worked for a while. Flash forward to sixth grade. I’m eleven and a half years old and while in my dance class my stomach began to hurt. I remember the pain so clearly, it was unlike anything I’d ever experienced before. My lower stomach seared with pain and it spread all the way down my legs. I couldn’t walk, and a friend later told me that I went white. Lo and behold, I got my first period.
For three and a half years, once a month, I had to either stay home from school or leave school early because I would begin screaming and crying, the pain was so unbearable. Every month I begged my mom to put me on birth control, having seen how well it helped my sister’s cramps, but my mom was understandably hesitant about putting such a young girl on birth control. Finally, at fifteen, I went to the gynecologist and we decided that I would go on Ortho-Trycecline (low), one of the many different types of birth control pills. My doctor told me that it might be endometriosis, but that it was more likely dysmenorrhea, which is just the medical term for really bad period cramps. This pill would proceed to do nothing for me besides protecting me from getting pregnant (and at fourteen, that was the only thing I didn’t need the pill to do).
Over the next three years, I would go on Ocella, Kareva, Lo Loestrin, Junel, Ortho-Trycecline (normal), Yaz, and Nortel. That’s eight different birth control pills in total. Nothing changed. Once a month it would feel as though someone was sticking their hand in my uterus and ripping and pulling everything in there. Once a month I couldn’t attend school because I was stuck on the couch wrapped in a heating pad. Once a month I was rendered immobile because the pain was so unbearable that if I moved I thought I would pass out. And during this time I’m just constantly seeing other people who experience periods going about their days totally fine with just a few Advil on their periods. I was taking four Advil every four hours, and I still was in pain (and this is also probably the reason why my stomach sucks).
I was so scared that there was something seriously wrong with me, but every sonogram I had would come back normal. I began to have the horrible thought, what if I’m making it up? I mean, sure, the pain was very real, but my doctor kept dismissing it as dysmenorrhea and people consistently told me that it couldn’t be that bad. They’re just period cramps after all. Maybe I was just unable to handle pain! I felt like I couldn’t do anything because of my period. It was during this time that I began to develop something called Premenstrual Dysphoric Disorder (PMDD), which is similar to PMS, except it causes depression. The PMDD would make me begin cramping a week before my period and continue to have cramps one week after my period, meaning that there was really only one week a month that my period wasn’t ruling my life. I was so unbelievably miserable for so long, all because of a monthly function that half the people in this world deal with.
When I was eighteen, my gynecologist told me he couldn’t figure out what was wrong and he was going to refer me to a pediatric gynecologist (pediatric gynecologists specialize in looking for disorders since most children aren’t going to the gynecologist unless something is wrong). I felt like I was being given up on. This was the man who was with me on my journey from the time I was eleven, and to hear him say that he had no more he could do for me was soul crushing. But this new doctor ended up being my saving grace. I told her my symptoms and she immediately said, “it sounds like you have endometriosis.” After years of suggesting endometriosis instead of dysmenorrhea to my first doctor and after years of him shooting it down, it was a breath of fresh air to hear a doctor confirm my suspicions. She immediately scheduled a laparoscopy to go into my reproductive system and see if there was endo there, and if there was she was going to remove it. She also put an IUD inside of me to keep the endo at bay. And sure enough, when my first period after the surgery came, I felt no pain. I almost cried when I realized that the surgery worked and I would be able to live my life without being so scared of my period. Finally, I would get to learn what it was like to be normal.
My endometriosis remained dormant for eight months. During my freshman year at college, I began to notice the pain coming back, but not as bad as it had once been. I am now a year and a half out from my surgery, and I’m fairly certain that some of the endo has grown back. This month (March 2019) has been particularly bad in terms of cramps (my poor boyfriend gets very concerned every time I wince in pain because he doesn’t understand that this used to be my everyday life), and it’s a bit discouraging to know that no matter what I do, the endo can grow back.
But endo has taught me something powerful. It has taught me that I am strong. It has taught me that I am able to push through the worst pain imaginable month after month and thrive. I am badass, and I wear my heating pad as a sash of honor. My surgery scars are part of the constellations on my body. And when I feel the pain of my endo coming back, I remind myself that somewhere out there, there is a young person just like I was who is in extreme pain once a month and doesn’t know why. I know that there is an adult out there who has been experiencing this pain since they were young but has had doctor after doctor tell them nothing is wrong. I know somewhere someone is Googling “endometriosis” for the first time and having their world changed.
Endometriosis is something that we need to raise awareness of and discuss more so that no one else has to go seven years (or longer) without a diagnosis. This disease is so unbelievably scary, especially when you don’t know what’s wrong. Believe kids when they talk about their pain. And if you’re reading this wondering if you have endo, talk to your doctor. I cannot stress this enough. You do not deserve to be in this much pain because of your period.
Follow me on Twitter and Instagram (@liz_zarb) where I will be without a doubt posting more about endometriosis awareness month for the rest of March, and don’t forget to like the blog’s Facebook page at to be notified about new posts. I’ll be back on here soon, and thank you as always for reading.