“In September of 2019, at the age of 20, I was diagnosed with endometriosis. For those who are not familiar, endometriosis is a chronic condition where tissue, similar to the tissue lining the uterus, grows outside. This forms lesions on other organs, ranging from your uterus to the ovaries, bladder, bowels, lungs, and in some cases, the brain. When menstruating, a layer of these lesions are shed like it would in the uterus. However, unlike the uterus, these lesions have nowhere for the blood to escape. In turn, each period these lesions grow, becoming more adhesive and destructive to the body.
Endometriosis is a whole body disease, and is so much more than just a bad period. Symptoms of endometriosis include, but are not limited to, pain in the lower back, pelvis, rectum and vagina, painful and irregular periods, cramps, heavy bleeding, painful sex, inflammation, infertility, fatigue, bloating, constipation, and nausea. These were all symptoms I became accustomed to at a young age and convinced myself they were normal. For eight years, my pain was brushed off by doctors, specialists, my friends, and even myself. I want to clarify now having painful periods is NOT normal and it is time we stop normalizing such pain—your pain is real and your pain is valid, sisters!
My teenage years were a period of my life where I completely lost touch with myself and my body. I truly believed the debilitating pain I was experiencing was all in my head. It all felt impossible to navigate. Where do you even begin? I felt alone and misunderstood. Why doesn’t anyone believe me? What was wrong with me? Why were all of my test results coming back telling me I was fine? Why didn’t any of my friends have these issues? Was I just different? Everybody I had previously sought help from solidified the very thought nothing was wrong with me. For seven years, this pain took over my life. For seven years, I felt like I was going crazy.
Growing up, I was hyper, sassy, energetic and loud as heck. I was always running around yelling, trying to make others laugh. I just wanted everybody around me to be as happy as I was. I was also a natural caretaker. I loved animals and was obsessed with babies. The only thing I knew was I wanted to have babies one day, and lots of them. Little did I know later down the road, this might not even be a possibility for me. My story all started with my first period at the age of 13. Each month, my symptoms got worse and worse. When I got my period, I found myself living in the nurse’s office at school. My teachers would even punish me for ‘skipping’ class. At this time, I noticed all of my friends seemed to get through their periods effortlessly. It was just an annoyance for them. They could use a tampon and would be set for the day. Lets just say, this wasn’t the case for me.
Throughout sophomore year of high school, I would lay in bed for days on end and was missing school each month. Around the age of 15, I decided to talk to a doctor about the pain I was experiencing with my period. Without much thought, I was put on a birth control which promised to fix my periods. I was put on 10 different birth controls in the following three years with little to no help. My doctors told me I ‘just had a bad period’ and ‘it’s a part of being a girl.’ If this is just part of being a girl, then what the f*%$. After graduating high school, my pain continued to worsen. Not only was I completely wiped during my period, but I was in pain all of the time. I lost an unhealthy amount of weight, I was severely constipated, I always looked six months pregnant, I was unable to eat or drink without pain, my anxiety and depression spiked, and my period pain seemed to never subside. I was missing days of work, becoming unreliable, and I just wasn’t myself. Everything seemed to be going downhill, and fast.
Around the age of 17, I brought up the possibility of endometriosis to my primary care physician. I had stumbled across an article online and it seemed like all of my symptoms matched up. I was basically laughed out of the room. We had taken MRI’s, x-rays, and ultrasounds—everything looked ‘normal.’ Even though everything looked fine on the outside, I knew things weren’t right on the inside. I was put on yet another birth control and was told I need to ‘stop researching my symptoms’ and ‘needed to just let the doctors do their job.’ In the next year, I pushed through some of the worst pain I have ever experienced.
What people without a chronic illness don’t understand is keeping up with our fast-paced society with a chronic illness is impossible. Since others can’t physically see your illness, you’re expected to keep up. I was expected to go to work, go to school, get good grades, and smile while doing all of it. I never wanted to let anybody down, so I showed up to all of my commitments, even if I really wanted to be curled up in a ball. When I was in the hospital, my boss would still make me find people to cover my shifts or I’d be penalized, and in school, having bad cramps doesn’t really get you an extra day to get work done.
You really get to know who people are when you develop a chronic illness. You notice how unsupportive people are. Even close friends and family. This became very apparent when I lost two of my life long best friends. We used to be inseparable. These were friends I thought would last a lifetime. We talked about our kids becoming best friends and growing old together. However, when I got really sick, this friendship dissolved almost instantaneously. When I’d ask for them to slow down for me, they always made me aware of how much of a burden I was to them. I was holding them back from having fun. So, eventually I just stopped being invited to things and they continued on as if I never even existed. The same people who saw me suffer day in and day out decided one day I was just too much of an inconvenience to keep in their lives. This was one of the hardest pills to swallow. Not only was I suffering in silence, but the only people who truly understood what I was going through didn’t care enough to support me.
In 2018, with no help from my doctors, a co-worker of mine was working with me to get an appointment with her gastroenterologist. The bloating, the nausea, the back pain…it all made sense. At my first visit, I was diagnosed with IBS. At last! A diagnosis which explained everything! Well, everything but…the period pain, joint pain, back pain, cramping, rectal and vaginal pain, bloating, painful sex, or the fatigue. My gastro ensured me I had IBS and was convinced all of my other issues were just a part of being a woman, and I just had a lower pain tolerance than most. I needed to focus on this first, and everything would fall into line. But what followed was quite the opposite.
Over the course of 3 months, I was put on 3 different medications for IBS which only made my pain worse, leaving me nauseous, with my stomach in knots. Eventually, I became aware of just how serious this was getting. I couldn’t keep brushing it off—even if my doctors were telling me to. I went to the ER and they took x-rays which confirmed the severity of my constipation. I was at a loss of words. My stomach was filled all the way from my bowels to my intestines reaching close to my heart. The doctors told me if I were to go on like this any longer I could have died. They instructed me to take laxatives, drink some prune juice, and to just sit on the toilet, then sent me on my way with no help.
After countless unfortunate and unhelpful interactions with my health providers, I sort of lost hope in the doctors. I fell into the mindset it was all in my head, so my medical progress came to a halt for over a year. I felt hopeless. My pain wasn’t real. I was just being over dramatic—my nickname was drama queen, after all. A few months had passed and pain was taking over my life. It felt like a sharp blade slicing through my insides. My joints were sore and achy. My back felt like it was burning and internally bleeding. Everything hurt.
I felt like a lot of this pain stemmed from my period, and I had many issues relating to pain in my pelvic region, so I made an appointment with an OBGYN. Before I could even finish explaining my symptoms, my gynecologist told me he thought I had endometriosis. I told him I didn’t have it. I explained how I was tested by my primary care physician and it all came back normal. He then informed me the only way to diagnose endometriosis was to have a laparoscopic surgery. You simply couldn’t see endometriosis through ultrasounds. He quickly booked me for a surgery two weeks out. The weeks leading up to my surgery, I was in my head. I was convinced this would just be yet another test which would come back telling me I’m normal. It was going to be a waste of everybody’s time. I wanted to call it off.
On September 6th, 2019, my surgery proved I did indeed have endometriosis, and quite a bit of it. At this time, I also had an IUD placed. I learned I had adhesions attached from my bowels to my ovaries, to my uterus and to the sidewalls of my belly. This meant my organs weren’t able to function the way they’re supposed to. It explained why I had such severe constipation—my bowels were kinked and twisted due to the endo. It explained the unbearable cramping and my bladder issues. After years of doctors telling me to stop trusting my gut, I am so glad I kept trudging along. At times I felt completely lost, alone, and thought I actually deserved this pain. Now here I am with a diagnosis of endometriosis which validates those years in pain.
The months following my surgery didn’t go as expected. I was under the impression my surgery would cure me for good but what happened was quite the opposite. My pain got much worse. I was put on medication which made me gain 40 pounds in 4 months. I learned there is no cure for endometriosis. I was maintaining a pain level of 8/10 every single day. In this process, I found out my OBGYN/surgeon lied about what he did in my surgery. With endometriosis, it is imperative you find an endometriosis specialist who specializes in excision. Excision cuts out all of the endometriosis, whereas your other option, ablation, just burns the surface and leaves endo behind. My surgeon performed both, when he said he had strictly done excision. He also told me a shot called Lupron, (a drug that would temporarily put my body in a state of menopause) was my only option to feel better. He was going to give me the shot that day in the office, but fortunately he didn’t have any and had to order more. Once I got home and researched the drug, I learned it’s the same drug they use for prostate cancer. Side effects of this drug included hot flashes, weight gain, depression, mood swings, brain bleeding, bone density loss, and in some cases, death. Thank God he didn’t have Lupron that day. After this, I decided he did all he could do for me, and I found an endometriosis specialist.
These last few months offered lots of self discovery. My specialist removed my IUD because of the pressure it was causing. It was the first time I had felt any sort of relief for as long as I can remember. I started going to pelvic floor therapy which helped my body in ways I could never even have imagined. Things got tough to say the least and I truly don’t know where I would be today without my support system. My family and boyfriend took care of me constantly. I was like a newborn baby, always needing help and attention. They helped me to the toilet when I couldn’t myself, they helped me shave and shower, they woke me up in the middle of the night to get me medicine, and my dad even took over my job and coached a sport he knew nothing about. Now THAT’s a support system. They have seen it all and they have been there for it all. I am so thankful for the love and support they gave me when I was at my lowest lows.
My boyfriend, Jake, has been my rock. Jake isn’t like any 21-year-old I’ve ever met. He has been entirely understanding. He knows me better than anybody. He can tell what’s wrong just by the look on my face. He never makes me feel guilty for the things he misses out on when he’s taking care of me. He’s the one who helped me understand my worth and I honestly don’t know where I would be without his constant love and support. He’s held my hand through it all and without him, I wouldn’t be half the person I am today. Now, with the support of my friends and family, I was also welcomed into the endo community with open arms. I met others who suffered just like me. I wasn’t alone. This community raised me up to heights I never imagined were possible. My pain was validated and I made connections with amazing women who helped me progress tremendously.
I was finally able to put a name to my pain. In this time, however, I found there is such little awareness for an illness that affects 1/10 women. The average time it takes for a woman to be diagnosed with endometriosis is seven years. Seven years of misdiagnoses, of heartache, of hopelessness. I simply didn’t understand why anybody didn’t know what it was when millions of women around the world struggled.
My purpose is to educate the world! I have made it my mission to create a platform that shows the good, the bad, and the ugly of endo and chronic illnesses in general. I created my Instagram as a means for me to cope with my diagnosis, to spread awareness, to share my story, and most importantly, to let people know they are not alone! I never want anybody to have to struggle the way many of us endo warriors have. I want to be the person who actually believes her pain and guides them toward a diagnosis. The one who gives them hope. I want to be the one who sparks up conversation about uncomfortable things and spread as much awareness as possible.
In the past I would dwell on everything this illness had taken away from me, but now I have a whole new perspective. I am so thankful for everything it has given me. It’s given me the strength to advocate for myself and others. It’s given me the opportunity to create relationships that serve me as much as I serve them. It’s given me strength and resilience. It has given me, me.”
This story was submitted to Love What Matters by Emma Maxwell of New Hampshire. You can follow her journey on Instagram. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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