My Endo Journey: College and Beyond

This picture was taken the day after I was in the ER because of my Endo. I was in excruciating pain and had spent all day with a heating pad under my sweatshirt because I had multiple midterms that day. Even though both mentally and physically I was in a horrible place when this picture was taken, I didn’t want Endo to make me miss out on receiving my general honors degree or from getting to take a picture with the president of OSU, Burns Hargis. 

Let’s back up a bit though. When I started college, I was on Lupron. That lasted until March of my freshman year. For the first time in my life, I was feeling pretty normal. I had adjusted to college well and was having more good days than bad days. Even my bad days weren’t nearly as bad as they had once been. I was filled with hope and excitement for the future.  

That changed when I realized I had to stop taking Lupron. Now I know that Lupron doesn’t work for everyone, but it worked for me. I didn’t want to go back to being in constant pain and I was terrified of having to deal with the pain without having my mom there to help me through it. 

When I met with Dr. Jane about next steps, she said that she was putting me back on a birth control pill. The chemical makeup of this particular pill was similar to Lupron, so we were hoping that I would continue to have good results. 

Disclaimer: Everyone reacts to medication differently, so make sure that you visit your doctor before switching medication. Just because it works for me and I do it, does not mean that you should.  

Dr. Jane wanted me to skip the placebo pills at the end of the pack and move straight into the next pack. By doing this, I would hopefully not get my period. Her goal is that I don’t get a period until I am ready to have children. Ideally, this will slow down the growth of the lesions and give me a better chance of having children one day. 

The switch happened seamlessly. I couldn’t have asked for it to go better. Just like that I moved into the next phase of my Endo journey. For almost two and a half years, I did pretty well. My pains days continued to decrease in frequency, and I felt practically normal. 

 In October of 2018 that all changed. That October was crazy busy for me. I was in charge of multiple organizations, each of which had an entire week of events scheduled for October. Throw in OSU homecoming and Fall break and my mouth was in a word: insane. Add in the fact that I had recently started working, and I was balancing a lot of different plates. 

It all started on Tuesday night. I had spent the night prepping German food to sell the next day with German Club. I remember feeling more bloated than normal and I had a few drops of blood in my urine. I put a pad on and went to bed.  

The next day I set up the food sale, worked it, went to class, then back to the food sale. I felt like I was running around like a chicken with its head cut off. Throughout the day I begin to feel worse and worse. The bloating is back, along with pain. My head was pounding, and I just felt like curling up in a ball. Then I realized I was bleeding. 

I hadn’t bled since December 2015, so I was obviously more than a little freaked out. I called Dr. Jane that Wednesday after all my commitments were done and told her the situation. She was busy with patients, so I left a message. That isn’t abnormal and to be honest, I wasn’t too worried. I just assumed that it was just a normal period. 

It isn’t uncommon to have a period every once in a while, when you are on the pill. It was actually more unusual that I hadn’t bled at all since being on the new pill. So, I went on with my life. 

On Thursday I went to class and I was at work with Dr. Jane’s nurse called me. She said that she wanted me to come in for a sonogram and for some other tests to make sure that everything was okay. I told her that I lived out of state (their office was located in DFW- I was in Oklahoma). She said that she would fax over a referral. 

I went back to work. She called back three minutes later with other plans. After talking with Dr. Jane again, they determined that I needed to be seen sooner rather than later. They told me to go to the ER and that they would call and tell them what tests needed to be run. 

 I got off the phone and the first thing I did was text my mom. I asked if I should go straight to the doctor or finish up work. Looking back I just shake my head at that question. If a doctor tells you to go to the ER, you go to the ER. You don’t wait until work ends, but I was new and didn’t want to rock the boat. I emailed my boss and let her know that I had a medical emergency and left. 

My roommate was kind enough to actually drive me to the ER, which was good because I was freaking out a little bit. I didn’t have to wait long before I was taken back. She stayed out in the waiting room studying because she had a huge test the next day. 

The nurse came in and took all my vitals and started asking questions. I told her everything I could and all about my history of Endo, or at least a condensed version of it. At that point the doctor came in. 

Sitting in the Stillwater ER

I will cut right to the chase and say that the ER doctor didn’t believe me. He said that there was no way that I had Endo, I was too young. He then said that I was probably pregnant, which was physically impossible. The only test that he ran on me that night was a pregnancy test. He then told me to use a heating pad and Advil. 

I left the hospital in tears. Even with a diagnosis I was still being made to feel like I was crazy. It was horrible. I was so discouraged and also scared. Without any testing being done at the ER, I was no closer to finding out what was wrong with me. After Dr. Jane’s urgings, I was beginning to feel as if something was actually wrong. 

That Friday I had two midterms, two advising appointments and an honors ceremony. Skipping was not an option. So I put on yoga pants and one of my brother’s sweatshirts and then took a rice heating pad and used an ace-bandage to wrap it around my body. Then I went to class as if nothing was wrong. 

My parents were already planning to drive up that Friday for the honors ceremony, which was my saving grace. They picked me up on campus after my last class and I just about collapsed in their arms. I was in pain, tired, scared and just wanted to be done. They did their best to distract me from the pain and take care of me. 

The next Monday I called the hospital and asked to schedule a sonogram. They were able to schedule me in for Wednesday morning. I had also made an appointment with Dr. Jane for that Friday, so I could learn the results of the sonogram and make a plan. 

Fast forward to Friday, Dr. Jane tells me that the sonogram showed nothing. Maybe there was a little extra fluid around my right ovary, but nothing to be concerned about. She then tested my urine and found both red and white blood cells in it. 

Now I have had UTI’s before. I know what they feel like. What I was experiencing felt nothing like a UTI, it felt nothing like a cyst, and it didn’t feel like my normal Endo pain. Yet the blood in my urine seemed to point to UTI. So, we treated with antibiotics and I went on my way with instructions to call her if things changed or got worse. 

Things didn’t get worse, but they didn’t get better. For the rest of October and November I was in constant pain. Every day I would come home from work and school and lay in bed with a heating pad. It became a normal occurrence to hide a heated rice pad under my clothes and go to class. It was horrible. All my fears from after my surgery came back with a vengeance. 

Was this going to be what my life was like? I didn’t want this. 

When I went home for Thanksgiving a new symptom emerged. I started having pain in my lower back on my right side. To me it felt like a kidney infection, something I had experienced in my life. I didn’t have time to schedule an appointment with Dr. Jane and my general doctor was on vacation, so I went to a care now. 

Surprise, they found blood in my urine. They sent it off for tests and put me on antibiotics. They said they would call on Friday with the results of the cultures. They didn’t call back until just before 6pm on Friday. There was both red and white blood cells in my urine, but the cultures didn’t grow. It wasn’t an infection. 

They said I had kidney stones and that I needed an MRI. I told them I was going back to Oklahoma on Sunday and they would either have to order one in Oklahoma or it would have to wait until after finals. I waited and my misery just continued to grow. Finals passed by in a blur of pain and I was finally home again. 

Back in October, I had scheduled a follow-up with Dr. Jane for the Monday after finals week. I had also scheduled an appointment with my main doctor, let’s call him Dr. Tim. Dr. Jane found large amounts of blood in my urine and agreed that it was probably kidney stones. She ordered an MRI for later that day. 

Dr. Tim also thought it was kidney stones and he ordered a full lab work up on my urine. That day I went to four different doctors’ offices for tests. The MRI ended up coming back negative for anything remotely strange, putting me back at square one. 

At this point, I have had blood in my urine for almost three months. I am in constant pain that it is getting worse at this point, not better. I am also scheduled to fly home to Wisconsin for the holidays in a few days. 

I am communicating with both Dr. Tim and Dr. Jane, trying to figure out next steps. Dr. Tim completely blows me off but Dr. Jane, once again takes me seriously. She referred me to a urologist, who I scheduled an appointment with once I got home. 

I finally get to see the urologist on Dec.31st. I had flown back the night before and was exhausted and in pain. Once again, there is blood in my urine and once again there doesn’t appear to be a reason for it. He thinks that everything looks fine. His opinion was that it was all related to Endo. He agreed to do a bladder scope to rule out anything, but he said that we wouldn’t find anything. 

A few days later I come back for the scope. The nurse commented that I had blood in my urine and I just rolled my eyes. Of course, they found nothing, and he said that it was out of his wheelhouse. 

What am I supposed to feel at this point? Something is clearly wrong. You don’t just have blood in your urine for no reason. Something had clearly changed in my body, but no one could tell me what. The pain was starting to diminish, but not nearly as much as I wanted. Even so, it became a waiting game. Unless something else changed, there was nothing more we could do. 

I went back to school and things continued to improve. Instead of functioning at a 7 or 8 on the pain scale, it was more of a 5. That was manageable. Yet come February, I started bleeding again. 

Dr. Jane saw me over spring break, and we changed my medications to the first FDA approved drug that specifically targets Endo. It’s called Orlissa and so far, it’s been working better than my pill was. My pain days are still here, but nothing compared to what they were a year ago. 

I don’t think I will ever know what happened to cause such changes in my body. For a while the working theory was that I had an ovarian cyst rupture and it caused various infections, but there is no way to prove that. 

So, here I am. I’m once again in a waiting game. My pain is under control for the main part and I feel hopeful that this new medication is working, but the fear is always there. I bloat much more than I used to, but it isn’t always painful like it was. I try to be optimistic about my Endo, but some days that is really hard. 

Endo had changed my life in so many ways. It’s a disease that I wouldn’t wish upon anyone. I know that I am more fortunate than many. I have a doctor that stands behind me and is trying to be as forward thinking with my care as possible. I have a family who loves and supports me through both the highs and lows. I have good insurance to help the financial burden of chronic conditions. I know that I am never alone and more importantly that I am not crazy. 

 The pain is not in my head. It never was. Endo is real and it has real life effects. So, for now, I wait. I wait with a hopeful heart, hopeful that modern medicine will continue to advance and new discoveries and advancements will be made. I wait with thousands of other Endo Warriors for the day that we don’t have to fight against our own bodies anymore. 

MRC

My Endo Journey: High School

Periods. They are a subject that we aren’t supposed to talk about. It’s taboo. 

Why? Periods are a natural part of being a woman. Half of the population experiences them and yet we still can’t talk about them. Well, I’m going to talk about them. If that makes you uncomfortable, deal with it. 

After my cyst, my periods were all over the place. I never had a normal cycle. Sometimes it would be three weeks in between periods, other times it would be closer to five weeks. That made preparing for my period pretty difficult. My only warning side would be pain, and by that point, I didn’t have long before I started bleeding. 

My periods weren’t overly heavy, but my cramps were awful. I heard my friends talking about PMS and their own periods and it sounded nothing like what I was experiencing. What did I know though? I kept my mouth shut and just dealt with it. 

Eighth grade passed without incident, except that I moved across the country the summer between eighth grade and freshman year. I didn’t get my period for over three months due to stress. Then, of course, I had an absolutely horrible period on my second day of high school… what a joy that was. 

That fall I had my first appointment with my new pediatrician. My mom came with me and we made sure to mention my weird and awful periods. She recommended going on birth control. By then I was fourteen and she saw no reason not to try birth control. I can’t remember which pill she prescribed me, but I do remember her telling me that there are plenty of pills, each with their own levels of estrogen and progesterone. If this pill didn’t work, we could just try another one until we found one that did. 

She did mention that if I didn’t see any improvement after taking the pill that she wanted me to see a gynecologist. I respect her so much for knowing that there were some things that other doctors were more qualified to do and telling me to seek those doctors out. 

I tried the pill for three months, which is a pretty standard trial period when it comes to birth control. There was no difference, except for the fact that my period now came every 30 days on the dot. Yet the pain was still there.  

In the new year, I went to my first gynecologist. At fourteen, it’s a slightly terrifying experience. No one wants to go see their gynecologist, let alone when you are fourteen. 

I will forever be grateful for my gynecologist. She is an amazing doctor who has a gift for putting people at ease but also for truly listening to them. Let’s call her Dr. Jane for brevities sake. Dr. Jane believed me from the very beginning. She never once tried to tell me that I was exaggerating the pain nor did she make me feel crazy when medication after medication did nothing for me. She was patient, progressive and kind. 

Most women with Endo have horror stories of doctors who didn’t believe them, of going to specialists after specialist with no results. I was lucky to start with an amazing doctor, but that didn’t mean it was a straightforward diagnosis. 

It’s at this point that I should mention that my mom has Endo as well. She was diagnosed at age 21 and her journey contained countless ups and downs, which ultimately ended with endometrial cancer. That is her story and I won’t get into it much. The reason I bring it up is due to the fact that there is a clear genetic component to Endo. 

That meant Endo was always on our radar as we tried pill after pill, but none of us wanted to jump the gun and do surgery without exhausting as many options as we could.  

For the next three years, I tried seven or eight different birth control pills. I honestly can’t remember how many. I tried each for at least three months, to really give it a fighting chance. Most of them produced no noticeable difference in pain or symptoms. A few made things worse. 

The summer before my senior year of high school, we sat down with Dr. Jane to talk about the last pill, which had once again been unsuccessful. At this point, it was beginning to look like there were other factors at work. Dr. Jane wanted to try one last pill and I agreed. 

Instead of being a typical birth control that contained one month of pills, it contained three months. That meant that instead of getting your period every month, you were only supposed to get it every three months. In theory, it sounded like a good idea. Even if my periods were still horrible, dealing with them only four times a year, instead of every month would be a start in the right direction. 

That is when things really went downhill. I only lasted three weeks on that pill before an exploratory surgery was scheduled. 

I had every side effect in the book. My hair began to fall out. I stopped eating. My vision went from being okay to being horrible. I wear contacts, but my prescription is far from horrible. One day, I went from being able to see to not being able to see the board at the front of the classroom in a single class period. Fast forward another hour and I could not even read the words on a computer screen sitting directly in front of me. 

There was one other major side effect, one that I’ve never chosen to focus on. I became suicidal. 

I am an anxious person, to begin with. I’ve experienced episodes of sadness, but never what I would consider a depressive episode. Generally, I am a happy person. All of that changed. I went from being normal to suicidal, skipping over any feelings that might be in between. I don’t think anyone really realized how bad it was. I tried to gloss over it because it scared me so much.  

What made this whole situation worse was that the three weeks I was on the pill synched up to my first three weeks of senior year. I came home crying every night because my body hurt, and I was scared of myself and what was happening to me.  

Dr. Jane didn’t even make me come into her office. She simply ordered me to stop taking the pill immediately and switched me to the lowest dose of birth control possible until the surgery. The side effects cleared up eventually, but from then on, I have been much more hesitant to take new medications.  

I had my surgery on November 19, 2015. I had to be at the hospital at 5:30 in the morning because the surgery was scheduled for 7:30.  

For obvious reasons, I hadn’t gotten much sleep. All I could think about was what the aftermath of the surgery would be like. Nine months earlier I had my first surgery where they shortened the ligaments in my ankle. To say that the recovery had been bad would be an understatement.  

Let’s just say that anesthesia is not my friend. I got sick for days, unable to keep down anything including pain medications. I eventually ended up unconscious on the bathroom floor. I never wanted to experience anything like that ever again.  

Sleep had also been elusive for another reason. The night before, I had watched the final installment of the Hunger Games movies at an early premiere. That meant the fangirl inside of me was busy analyzing every moment of the movie. 

So, it’s 5:30 in the morning and I am freaking out. One of my pastors met us at the hospital and said a prayer with us before we checked in. For those of you that aren’t religious, you might not understand how much that meant to me, but it meant the world. I knew that I had an army of prayer warriors at my back who would do anything they could to help me and my family through what was to come. 

I checked in and was given a hospital bracelet with all my information and also a bright red bracelet that listed my allergies. We sat for all of four minutes in the waiting room, my parents sitting on either side of me, holding my hands in a silent show of support. 

Here is a super blurry picture of me getting ready to go back to surgery

When we were called back, I had to change into an extra-large purple hospital gown that could be hooked up to a machine that would either act as a personal heater or air-conditioner. I was given the standard blue socks with sticky white soles. All my actual clothes were put in a plastic drawstring bag. 

The pre-op process started as soon as I was sitting in bed. Nurses circled in constantly, each finishing off a different aspect of a checklist. I was hooked up to an IV. I was asked to give my name and birthday more times than I cared to count. The anesthesiologist came in and talked through what they were going to do differently to try to help mitigate the negative side effects of anesthesia. I ended up getting a scopolamine patch and also an anti-nausea medication was added to my IV from the start. 

The final person to come in was Dr. Jane. She looked too awake for an early Thursday morning. She walked us through the surgery and what to expect during and afterward. Then it happened. I was wheeled back to the operating room. 

I was told that I wouldn’t remember being wheeled back, but I even remember seeing the operating room. It was so much larger than the OR where I had my ankle surgery. Then I went to sleep. 

I woke up alone in a dark room with a blanket wrapped around my head. apparently, they had problems warming me up after the surgery. Four blankets, my own personal heating apparatus and a blanket around my head was their solution. 

I just remember being super groggy and not wanting them to turn on the lights. I also remember a massive pad in between my legs, which was really uncomfortable, but not so much that I did anything to move it. 

My parents eventually came into the room and with it, I began to really wake up. I was given a small cup of cranberry juice and also a small cup of sprite to try to sip on, which I actually managed to keep down. That was a miracle in itself. 

The surgery had been orthoscopic, so I just had two little incisions, one in my belly button and one right above my bikini line. They had used bright purple super glue to close the wounds. The incisions didn’t hurt, nor did my stomach. What did hurt was my right shoulder. 

When they do abdominal surgery, they inflate your abdominal cavity with gases. Those gases travel up after the surgery and try to escape, but often get stuck in your shoulders. I had been told it would happen, but to be honest I hadn’t believed them. 

Before I was allowed to leave, they made me walk down the hallway and use the bathroom. I was still hooked up to an IV, so my mom held the IV, while my dad held my arm and helped me walk. A nurse commented that it looked like he was walking me down the aisle. After successfully completing everything on their checklist, the nurses let me leave. 

While in the hospital I never even asked what they had found. I guess deep down, I already knew the answer. Yet at the moment, I was more focused on getting home and into my own bed than finding out what was wrong with me. My mom got me a hot fudge shake on the way home because I wanted something to soothe my throat. 

Having a tube shoved down your throat doesn’t feel good. Plus, I had been under for longer than they were expecting. We had been told the surgery would only last about 45 minutes, I was in there over an hour and a half. That meant my throat was incredibly sore. I was just amazed that I was actually hungry and able to keep food down. That hadn’t happened until almost four days after my previous surgery. 

I slept for most of the day. My mom kept checking on me and making sure that I was staying hydrated. My drink of choice was Arctic blast Gatorade, well I guess it wasn’t by choice, but I needed the sugars and electrolytes.  

Food stayed down and I was able to let my body rest, though getting comfortable was still difficult. My shoulder really was killing me and eventually, my stomach started to hurt as well. My “Endo belly” was bad. 

At the Newsboys concert with a few friends

I had my surgery on a Thursday. That Saturday I went to a Newsboys concert. I had missed their concert the year before and wasn’t going to miss it again. Plus, I had bought the tickets before I knew I was having surgery. I was hopeful that it would provide a good distraction. I put on my loosest pair of pants and an oversized sweater, which is not normally the look I go for. 

 We picked up one of my friends on our way to the concert and she hadn’t seen me since the surgery. She spent the car ride asking my mom all sorts of Endo related questions, while I sat in silence, still not totally with it.   

It came out that Endo is the number one cause of infertility and how it had made it difficult for my mom to carry a pregnancy to term. That conversation just made me look down and try not to cry. 

For as long as I can remember I have wanted to be a mother. When other kids said they wanted to be an astronaut or a ballerina when they grew up, I said I wanted to be a mom. At just seventeen, I was having to come to terms with the fact that I might not be able to get pregnant. While that is not the only way to be a mother, it still was really hard to think that that option was already being taken from me. 

Then my mom started talking about how much Endo they had found. According to Dr. Jane, it was “widespread,” far more than she had imagined. Lesions had covered the entire back of my uterus, both of my fallopian tubes, and both of my ovaries. 

 “They took biopsies to test for cancer because of how widespread it was.” 

My heart stopped. Cancer. It’s a word that automatically creates fear. Could I really have cancer? My mom had endometrial cancer, which had led to a hysterectomy. Would that be me? 

While my mind raced with the possibility of a cancer filled future, my body was rebelling. While the surgery had gone as well as could be expected, there was a side effect that no one had been prepared for… an allergic reaction. 

 It turns out that I am really allergic to the soap that they use to prep you for surgery. My entire torso was covered in itchy, raised hives that made an already uncomfortable time, miserable. Due to the fact that it was a Saturday, there was little we could do until Monday except treat with over the counter allergy meds. 

On Sunday, I started getting stomach sick. I spent the day, exhausted and lying in bed. My grandparents had come down to celebrate Thanksgiving with us, which was the following week. I felt bad because I literally hugged them hello and then went back to bed. It’s impossible to know why I got so sick that day. Maybe it was an allergic reaction? Maybe it was just pain? Maybe I had caught a bug at the concert? All I knew was that it sucked.  

By Monday I was on a Prednisone pack, which comes with a whole list of its own side effects, but it helped the allergic reaction to calm down. That week, my new reality started. 

I had off that entire week, and I spent it doing as much research on Endo as I possibly could. I wanted to be as informed as possible when I went for my post-op visit. I knew which medications Dr. Jane would recommend and I wanted to research them. I joined support groups, looked at clinical trials for new medications, researched diets that could help. I spent hours trying to make sure that I could make informed decisions about my own health. 

The post-op appointment was two weeks after the surgery. By then the bright purple glue had peeled away, leaving two little raised scars. The bloating had gone down, but it wasn’t great by any means.  

Dr. Jane wanted to put me on a drug called Lupron. It causes you to go into a medically induced menopause. By doing that, you limit hormone spikes and periods, which ultimately slow down the growth of the lesions. In theory, it sounds like a good plan. 

I was terrified of going on Lupron. My mom had tried Lupron for her Endo and it had caused her kidneys to shut down and heart arrhythmia. She had suffered from the side effects for months. So far, my reactions to various medications had been pretty in line with what she had experienced. 

 Lupron had changed since my mom had taken it. Now it was given in smaller, one-month doses instead of three-month doses. There was an add-back therapy to help with side-effects. While Dr. Jane didn’t push it, she did highly recommend that I at least give it a chance. So, I did. 

 In the first month, I was terrified that something was going to go wrong. It didn’t help that in the middle of the month, I got a horrible UTI that was accompanied by kidney pain. Yet, it worked. My pain didn’t disappear, but it was a lot better than it had been before my surgery. The first six months on Lupron were full of ups and downs, but I stayed on it for a little over a year. Then, due to federal regulations, I had to be taken off of it. 

 Just like that, I felt like I was being thrown back to square one. I had a diagnosis but no treatment and no cure. The one thing that had been giving me some relief was about to be taken away. Where did that leave me?

MRC

My Endo Journey: The Early Years

First day of seventh grade

It all started when I was only 12 years old, almost exactly 9 years ago. It honestly feels like a lifetime ago. Until I started writing these posts, I didn’t realize how long it had been. Nine years. Nine years of being in pain and unable to trust my own body. 

It’s not a positive thought in the slightest, but it dulls when I think about ten, twenty, thirty years of being in pain. Medicine is constantly evolving, and new discoveries are always being made. Hopefully, in time there will be a cure or a treatment. Until then you will find me fighting and praying for answers. 

My story started in March of 2011. I was a naïve little seventh grader, whose biggest worry at the time was getting ready for a Battle of the Books competition. I thought I was as normal as could be. I was pretty healthy, had a good group of friends and was content with life. 

When I went home early on a Friday afternoon because my stomach was upset, I thought nothing of it. It was March, which meant flu season. My dad picked me up and that was that, or so I thought. 

The next day we had planned to paint three rooms in our house, my bedroom, one of my brother’s bedroom’s and our dining room. I loved (and still do) helping around the house with projects. Painting was something that I actually enjoyed, and I had been looking forward to helping. To put things simply, I did not help at all that day. 

I kept trying to help, but I would last about ten minutes before the pain in my side would become unbearable. Stubborn little me kept trying to help and my parents kept sending me to their room to lay down, because mine smelled like paint.

Over the counter pain medications did nothing to help. I wasn’t running a fever. I wasn’t throwing up. I just felt horrible. I had never experienced such pain. My parents tried giving me a heating pack and that did nothing. I had no appetite because of the pain, which also meant I was not staying hydrated, something that I still struggle with. 

That night I slept on an air mattress in my second brother’s room, because mine still smelled too strongly of paint for my parents to allow me to sleep in it. I barely slept that night because of the pain. No matter which way I laid, I was in horrible pain. I honestly thought I was dying.  

When morning finally came, I begged my parents to do something. I remember at one point lying on that mattress and just screaming that it hurt. My mom decided that enough was enough and that she was going to take me to the walk-in-clinic. We were all nervous and for good reason. 

We thought that it could be appendicitis. The pain was only on my right side, right where your appendix is. That August, my youngest brother had emergency surgery because of appendicitis. If the surgery had been even an hour later, we might have lost him. I think we all were nervous that history was repeating itself. Yet, there were clear difference between the two of us. He had been sick for over a week and his symptoms were nothing like mine, except for the pain.

Even so, my mom took me to the doctor. I was seen by an intern before the actual doctor. The intern was trying to get practice, and I didn’t care enough to say no. He spent about five minutes with me before the doctor came in and came to the conclusion that it was not appendicitis. The main doctor disagreed. 

They order a CT scan with contrast. Unlucky little me had already had a CT in life, but not one with contrast. That meant I didn’t have experience drinking the horrible contrast liquid that you must consume before entering the machine. 

As a child, I really struggled to stay hydrated. I just didn’t like drinking water. So, you can imagine my excitement when I was presented with two water bottles full of a nasty liquid that I needed to consume. The doctor made me drink an entire one in his office before he let me leave. During that time, I got my blood drawn for the first time, which was a little scary to be honest. Needles were a phobia of mine as a child, so it was unpleasant to say the least. 

We had time to go home in between the doctor and the scheduled CT. The CT was at another location, a brand-new medical center across town. That meant telling my dad what we thought was wrong and my parents trying to bribe me to drink the awful liquid that would give the doctors the answers they were looking for. 

Walking into the medical center was nerve-wracking. I was still feeling like death and now I was scared that something was seriously wrong. All I could think was, “what if I need to have surgery?” I couldn’t imagine anything worse than that. 

 I will be the first to admit that I have some childish mannerisms. In seventh grade I had even more. One being, I brought my blankie with me to the medical center. It was shoved up in the sleeve of my puffy winter coat, hidden from the world, but close enough to bring me comfort. I looked even more like a marshmallow than normal because of it. 

We had to check in at the main desk and I got a fancy medical wristband with all my information on it. Then we had to sit in the waiting room. I held my coat close, secretly rubbing the silk edge of my childhood blanket for comfort. My head was in my mom’s lap and I was laid out across a small couch. 

Then my name was called. My mom walked back with me as far as she could, but all too soon for my liking we were separated. They took me into the CT room and had me sit next to it, while they gave me an IV. Yet another needle… 

Finally, the test started. I knew to hold still, but pain makes that difficult. I stayed as still as I could, but I would bet money that they had more than a few unusable images. The pain spiked again while I was in the CT machine and it took all my willpower not to cry out. I’m amazed that I didn’t… or maybe I did, and I just don’t remember. 

It didn’t take horribly long, but it was long enough to me. They led me back out to my mom who was waiting with arms open wide. I once again curled up in her lap, not paying attention as the nurses told my mom that a doctor would be calling her shortly to take about the results. I never noticed that they handed my mom and old looking phone. It wasn’t a cell phone, more of the block-like phones that you had at home (back when you still had landlines). 

We didn’t have to wait long for the doctor to call. I was in too much pain to really care what he said. I knew my mom would tell me anything that I needed to know. 

I wish I could remember the look on her face when they told her or the sound of her voice when she told me. Yet try as I might, I can’t. I can clearly see myself laying on the couch, my head in her lap. I can see the phone that they gave her like it was yesterday. Yet I can’t remember her reaction. 

She stayed on the line for a couple minutes, asking questions and figuring out our next steps before she told me what was going on with my body. 

I had an ovarian cyst… and it was in the process of rupturing. 

I had no clue what that meant, not really. I hadn’t gotten my first period yet, so no one had thought to think of ovarian cysts. Also, what doctor’s mind goes to ovarian cyst when they are presented with a child with horrible pain on the right side? 

Due to the fact that the cyst was already rupturing, there was little that they could do. They sent me home with a prescription for pain meds and instructions to take it easy. I got a note saying that I shouldn’t go to school for a while and that was it. 

I remember being upset that I wouldn’t be able to go to school. I was supposed to compete in a Battle of the Books competition that Tuesday. There were only two people on our team, as opposed to the standard four. I couldn’t bear the thought of leaving my partner to compete by himself. 

 That week I stayed in bed, letting my body heal as much as it could. There were moments that the pain would spike and there were moments that it was almost manageable. I never would have guessed that my new normal would mirror those spikes. 

 By some miracle, my school had managed to get an extended deadline for the competition. I went to school on Friday and competed (it was an online competition). We ended up placing in the top twenty in the state, which I was pretty proud of. 

Telling my friends what was wrong with me was another story. No one had ever heard of an ovarian cyst, why should they? 

Almost exactly one month later I got my first period. Thus, started a cycle of painful periods that would last for years before someone would really start to take me seriously and try to help. 

Looking back, it’s so obvious what caused my ovarian cyst. While Endo does not cause cysts, it is corelated with an increase in cysts. It wasn’t until years later that my mom and I put two and two together. 

Three centimeters. Three centimeters of tissue that wasn’t supposed to be there changed my life forever, setting me on a path that I would never have chosen. Three centimeters. 

MRC

This is my Fight Song

I have a chronic pain condition. Most people don’t know about it, because I honestly put on a good façade. Yet, there are still days that I can’t hide the pain. It’s a pain that is indescribable and one that will never go away. 

On November 19, 2015, I was diagnosed with Endometriosis. It’s a disease that most people have never heard of, even though it impacts 1 in 10 women. Part of the reason that no one has heard of it, is the stigma around women’s health and gynecological issues. It’s risqué to talk about things like periods in public, even though it shouldn’t be. 

For those of you that don’t know what Endometriosis, or Endo, is here’s a quick summary of the disease. Endometrial tissue normally grows in the uterus and is shed during a woman’s period. It’s a natural thing, what isn’t natural is for it to grow outside of the uterus, which is what occurs when a woman has Endo. When endometrial tissue grows outside the uterus, it can’t shed. 

The technical term is Endo lesions. The best way it has been described to be is as little vines that grow off of the reproductive organs and attach to others tissue in the body, normally other internal organs. On bad days, the lesions shift, pulling at organs and causing immense pain. I can be having a conversation with someone, with absolutely no pain. Thirty seconds later I can be doubled over, practically passing out from the pain. 

 I personally tend to experience flare-ups whenever my hormones spike, so around ovulation and my period but it isn’t contained to those times. It can happen anytime and anywhere, often with little or no warning. It makes living your life really hard, especially when no one believes in your pain. 

On average it takes between 7 and 10 years to get a diagnosis of Endo because so many doctors are unaware of the symptoms. During those years of waiting, everyone around you begins to question you. How was I supposed to explain to my high school friends that when I had my period, it wasn’t just PMS that I was dealing with? I was in immense pain, that made going to school impossible. I would literally be curled up in the fetal position, unable to function for at least the first day of every period during my high school career. 

 While my friends would never have said anything, I think they all thought I was crazy. People I looked up to would tell me to take some Advil, do some yoga and that it was normal. Everyone had painful periods. With everyone telling you that the pain isn’t real, that it isn’t as bad as you think, you start to believe them. It gets harder and harder to explain to people why you are constantly canceling plans and missing out on things. Eventually, you just stop trying to explain. 

Getting a diagnosis can also only occur through physically seeing the lesions, which means surgery. In my case, it meant exploratory surgery. I was only 17. How my doctor managed to get insurance to cover that exploratory surgery, I don’t know, but I am so thankful that she did. 

There is no cure and there is no treatment. Even once they find lesions, there isn’t much that modern medicine can do. There are drugs, but none that stop the disease. At best they slow down the progression, at worst, there can be permanent side effects. 

So, how do you deal with it?  

I haven’t figured that out yet. Every time that I feel like I have figured out ways to manage my pain and I’m doing better, something changes, and I have to start from square one. I wish I could put it more elegantly, but it sucks. There is a sense of hopelessness that accompanies the disease. You question what your quality of life is going to be like if you will ever not be in pain. 

 Don’t get me wrong, I have a lot of good days. Right now, I am on an upward swing, but there is always that fear that it won’t last long. Who knows, maybe it will or maybe it won’t. 

March is Endometriosis Awareness Month. You will be able to find me sporting a yellow ribbon in support of all my fellow Endo Warriors who fight for a cure every day of their lives. Part of my fighting process is educating people about it which means sharing my story.  

My story spans 9 years already which is insane. I’m only 21, and yet Endo has been a part of my life for almost half of my life. 

 Each week I will write about a different part of my story, starting way back in seventh grade with little 12-year-old Samantha. There have been highs and lows and I’m willing to share it all. Maybe, just maybe, I can make someone feel like they aren’t alone… like they aren’t crazy. Hopefully, you stick around to read the rest of my story. 

If you are suffering from Endo or know someone who is, just remember that you are not alone. There is a whole community of us who are waiting out there, ready to welcome you with open arms. I’d like to tell you that it gets easier, and in some ways it does. That doesn’t mean that it will ever be easy though. No matter what, keep your head up and trust yourself. No one knows your body better than you do. If you think something is wrong, be your own advocate. If you get an answer you don’t like, get a second opinion, and a third if you need to. Never stop fighting for yourself. 

MRC