My Endometriosis story began when I was eleven. However, I didn’t even hear of the word until I was twenty-one. I’m sharing my story to bring awareness to this disease. I try my best to be accurate with any medical information or statistics, but if I’m wrong about anything, please let me know. Before I start, don’t let the topic of periods keep you from reading this. Yes, Endometriosis is a disease that involves the uterus. But it’s nothing to feel shy or embarrassed about.
What is Endometriosis (Endo for short)? It’s a disease where tissue called endometrium is found outside of the uterus. Basically, when a women who has a normal period bleeds, it all flows out, and all is well. However, with Endo, the blood makes its way out of the uterus and starts to stick to other organs. So as you could imagine, it causes a lot of problems and a lot of pain.
In 2004, I was at a Bible summer camp. I was eleven years old and woke up to some pretty awful cramps and bleeding. I knew enough to realize that my period had begun. I remember thinking about what I had learned during puberty classes at school. The nurse had mentioned that women experience cramps, but that Advil or Pamprin should help. So I just went to the camp nurse, but I didn’t find much relief from whatever she gave me. Swimming time was nice because I found that it helped ease the cramps. I didn’t play much soccer that year, which was my favorite thing to do at camp. Instead, I just read a lot and went swimming whenever the chance came up.
That’s my first recollection of the pain. However, I just shrugged it off as the cramps everyone has during their period experience. When school started that year, I remember visiting the nurse a lot whenever it was my time of month. I would be allowed to lay down in the back with a heating pad for thirty minutes and then was sent back to class. During this time, other girls in my class started getting their periods, and I couldn’t relate to what they were talking about. I remember saying once, “I can feel myself bleeding right now,” and then being told that I was being dramatic. What I was experiencing was Menorrhagia, which is so not normal for an eleven year-old (or anyone) to have. Anyway, all of these encounters could have been prevented if Endometriosis had been talked about during the dreaded puberty talk at school. I have no idea why it’s still not talked about during those talks, but that really needs to change.
Things stayed the same until 7th grade. I was walking to my bus stop when I was hit with the sharpest pain. It kept getting worse while I was on the bus. The bumps from the ride were too much, and I was crying. When I got to school, I went straight to the nurse’s office. At first, she just gave me some Advil and a heating pad, but after an hour, it had only gotten worse. That’s when she called an ambulance. When I was in the ER, I found out that I had five oh-so-lovely cysts bursting. However, after the episode, I was told that it’s common for women to have cysts and to see my general practitioner (GP) about it.
When I saw my GP, she told me that I developed the cysts because I was depressed. So to prevent them from growing and bursting again, I should go on anti-depressants. Being thirteen and trusting my doctor and mom, I started taking Prozac, which turned me into a mess of a teenager.
As you can imagine, the Prozac did nothing to help stop my painful periods. I ended up in the emergency room a couple more times for bursting cysts, each time being told that it was normal. I missed a lot of school, even when I was in school. I failed gym. Twice. I just didn’t have the energy, and whenever my period came, I would be in too much pain to sit in class. There were two nurses at my high school. One let me have the special dark room, a heating pad and an hour or two of rest. The second one would give me one of those Thermacare heating pads with the same comment every time, “I can only give you this once. They’re only meant for students to sample and then have their parents buy them more if they like it,” and then send me back to class. During this time, I started to cut myself. In my then-mind, no one believed the pain that I was in. Every time I would go for help, I was told that it was either normal or that I was making it up for attention. So I released all of my pain and frustrations by harming myself. It was a pain that I had control over. I am so happy to say that ultimately it was Jesus who took control over me and my life. It was His grace that saved me from that (dare I say) period of my life.
When I was fifteen, I finally decided to stop the Prozac. I was taking it to stop the cramps, and it wasn’t doing that at all. My GP was still telling me that I was just depressed, exaggerating my pain to get attention. Honestly, I grew up in a family that lacked love. So I believed my GP for a while, until I realized that the bad cramps and heavy bleeding weren’t caused by my being sad. Something was wrong, but the ER docs and my GP didn’t seem to care too much. By that time, I was going to Youth Group. I had stopped cutting, and I had a job. Somewhere during that time, I started to understand that I was my own advocate when it came to my health. Although, I still hadn’t found a doctor who would help me. so I started taking a heating pad with me on bad days without caring what people would think of me.
I did end up graduating on time. For my senior year, I transferred to a Charter School. They took my credits differently than the high school did and were understanding when I didn’t feel well. Somewhere along the way, I got a really bad ear infection, which turned into an infection of my Mastoid bone. I had to have surgery on my left ear when I was seventeen. While I was recovering from that surgery, I was on pain medications, which in turn helped my cramps. It took around 6-8 months for me to fully recover from that surgery, which honestly was a nice break from the cramps.
Then I went on to college. This is when things started to get a lot worse for me physically, but it’s also when I started to really piece things together. I ended up in the ER countless times with bursting cysts and migraines. Because of this, I talked to girls in the dorm about their periods, which is where I learned what a normal period should be like. I started going to a chiropractor weekly, which helped with my hip, back and neck pains. Not so much with my monthly cramps.
During my second year at college, things really went south fast. I was starting to be in pain all of the time, not just 1-2 weeks out of a month. The doctor that I was seeing sent me to a gastrologist to get a bunch of tests done. I was then diagnosed with Gastroenteritis and was told that I just had to wait it out.
At this point, my then doctor knew my whole history of cysts, painful periods, heavy flow, exhaustion and acne. However, it was all dismissed as a type of flu that I had to get over. I started to wonder though if all of these things were connected somehow.
The summer after my freshman year and onward, I was dating and then became engaged to Sam. I would drive 2.5 hours to see him almost every weekend during the first semester of my sophomore year of college. His mom is a nurse, and one time when I was visiting I had an awful period. She asked a lot of questions and was one of the first medical professionals to show an interest and then show concern about the pain I was experiencing.
So right after Sam and I got married, I found a new doctor and begged her to help me. After having an ultrasound done, she found something odd about my uterus. She told me that it was honestly above anything that she knew about. I have to say, I really appreciate and respect it when doctors are honest like that. She sent me to a gynecologist, who I got in to see right away.
During my first appointment with him, I heard the word Endometriosis. He told me that he strongly felt that I had it and that I had two options: to start a birth control and see if that helped, or to have a laparoscopic surgery (lap) to diagnose and, if found, remove it. Since Sam and I had decided to start a family right away, I chose to have the surgery, which ended up being my first lap.
When I went in for my first lap, I was so scared. What if nothing was found? What would I do then? I remember waking up and immediately asking if he had found anything. I cried a lot when the nurse said yes. He had found Endometriosis, the cause of all of my pain. I thought that would be it. My suffering had a name, and I would be properly helped from here on out. I was very, very wrong.
The surgeon had botched the lap. Not only did he end up just taking a few samples of the Endo that he saw (instead of removing it all), he had also put the incisions in the wrong spots, causing nerve damage. I was in more pain after surgery than I was before. Whenever I went back to him, he told me that was impossible, and eventually getting in to see him became difficult. Thankfully, Sam had gotten a job in Maryland. I had the surgery in November of 2013, and we moved to Maryland in February. I found an Endo specialist in Towson, MD, and had my second lap in April of 2014, just five months after the first.
It was during that surgery that my Endo doc found a lot of lesions and adhesions that were left behind previously. After I healed from that lap, I had around a month of being pain-free. It could have been much longer if I had started a birth control, but we were still trying to get pregnant. So birth control was not option, and the Endo ended up coming back right away. I started seeing a Pain Management Specialist so I could be relatively comfortable.
During the summer of 2015, we started doing rounds of Clomid, two to be exact. I wasn’t told beforehand that Clomid is known to cause Endo to grow quickly, which is what ended up happening to me. The pain started being constant. I tried to quiet it down by taking a birth control called Aygestin, but when it didn’t help, I called uncle. I couldn’t keep putting my body through all of this to become pregnant. So we’ve now decided to adopt! Woo!
By November, I was finally able to get in to see my Endo doc. He said that he was following my case from afar and was expecting to see me soon. On December 2nd, 2015, I had my third lap. I’ll find out my results this Monday, 12/28/15. So this is where my Endometriosis story is at now.
The moment that the first nurse told me, yes, he had found Endometriosis, everything I had gone through since I was eleven was, in fact, real. I hadn’t made any of it up. With being diagnosed, I’ve had to go through and let go of a lot of anger towards those who had ignored me. Now I’m just passionately angry to help others so they don’t have to go through what I did to become diagnosed.
So please, share my story. Share your story. Or if you know someone who is going through painful periods but has yet to find out why, tell them about Endometriosis. If someone had told me when I was 11, I can’t even imagine what could have happened.
It took 9 years for me to be diagnosed. I pray every day for young girls who are struggling that this won’t be their story. How can this be prevented? By doing something.
Do something about Endometriosis. If you have Endo, do something. If you know someone who does, do something. There’s estimated 175 million women worldwide who suffer from this awful disease, yet there’s no cure. Not only is there no cure, but it usually takes around 10 years to be properly diagnosed. Even after being diagnosed, women with Endo have to fight to actually be heard and helped. This could be prevented if those in the medical field were better trained in this disease, and also if it were taught about during the puberty talk in schools. There is so much that could be done. So let’s start with this: Just do something about Endometriosis!
The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.
This story is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.