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