How I finally found out I had Endometriosis after years of pain and a prolonged NYC visit
Four years ago me and Stevie took a trip to New York, one that I had looked forward to for what felt like forever. We spent most of our time being tourists, and I was in love with the city. (And also exhausted by it because it’s massive!)
We visited the Statue of Liberty, saw the Phantom of the Opera, went to the Met, ate so many delicious meals, and saw the most beautiful sights. One morning we were assisting our friend Brett at a photoshoot, and I started feeling terrible. I had just started my period and the pain initially seemed like it was just from cramping. As the morning went on though, it got worse. I physically could not bear trying to work the shoot and smile through the pain anymore. I was use to having to stay on ibuprofen during that time each month, and it usually really helped me. This time, not so much. I knew something was terribly off, but didn’t know why.
Stevie and I left the studio and took an Uber back to the hotel. The cramping got so severe that I started throwing up, shaking and hyperventilating. Stevie was on the phone with my parents trying to make decisions for me since I was in no shape to. I was in so much pain, I couldn’t think straight. It was a lot on Stevie, and we had never experienced anything like this together. We were in an unfamiliar city, with no car. And it was totally overwhelming needing to get help and not being sure of the best way to do it. I couldn’t even stand up, so the thought of Ubering or riding the subway to an ER sounded impossible. Stevie ended up calling 9-1-1. I don’t remember the ambulance ride at all, and only recall bits and blurs of that whole night.
Once we got to the ER we waited for hours in the hallway. It was pure chaos. Someone came in that had been stabbed, and there were people on stretchers lining the hallway waiting to be plugged into a “room.” We were finally scooted just off the hall into a little cubby area where thin curtains separated all the stretchers. I couldn’t keep anything down and spent hours waiting for an IV. I was still throwing up until there was literally nothing else left and was super dehydrated.
Stevie kept asking the receptionist when someone would see me, and she couldn’t give him an answer. Out of desperation and probably fear of how ghostly I looked, he finally stopped a doctor in the hall and *made* him check on me. This is not very characteristic of Stevie to do, but boy was I glad boyfriend-bear came out. The doctor initially told us someone would be with me soon. But when he looked down and saw the state of my barf bag that got his attention. He immediately got me an IV going himself. And he got Stevie, who almost passed out watching the IV go in, some food.
After a CT scan, the doctor said I had an obstruction in my small intestine. He said it was serious and that they may have to do emergency surgery. I remember he kept asking me, “Are you sure you’ve never had stomach surgery or any stomach problems before?” He asked me so many times that I started wondering “Wait, have I??” There is not much I remember about that night besides pain and fatigue. But I do remember asking him myself if all this could possibly be related to my period at all since I had also started that day. He shook his head and said no.
Around 3:00 am I was admitted into the hospital and stayed for 3 days. The obstruction became partial on its own, thank goodness, which meant no surgery was needed. After being on narcotics and antibiotics for days, I slowly started to heal and get better. My parents flew up when there was talk of surgery, and they and Stevie were by my side the whole time. Although the nurses and doctors were amazing and I’m still so thankful to this day for them and the way they cared for me, the hospital itself was like going back in time 35 years. My mom said it looked the hospital she worked at in nursing school! It still had window units, shared rooms, and let’s just say it made me really miss and appreciate Tennessee hospitals.
I don’t think I have ever missed home more than I did then, and it motivated me to make progress. I tried to walk around the halls, and Dad would plead with me to eat “just one more piece” of solid food even when I felt like I couldn’t. It’s crazy how walking a few feet or eating a piece of bread was such a triumph. We celebrated each little victory though. And I tried so hard because I knew they would discharge me if I showed improvement.
On the last day, the doctor came in and checked me out and said he’d like for me to stay overnight one more night. I started crying because I wanted out of there so bad. He then told me if I could eat and do everything on this checklist then I could go. I had never felt such relief pour over me! We got out of the hospital and onto a plane in one fell Uber swoop. The doctors there in New York, as well as a gastroenterologist I saw in Nashville when I got back, chalked my sickness up to being the perfect (worst) storm of multiple sicknesses going on at once. And that was the only explanation I got for it. They ruled out Crohn’s and other stomach issues, and sent me on my way saying it should not happen again.
A month later the exact same thing happened again.
Although the doctors already said it wasn’t period related, I had my suspicions and wanted to pay careful attention to how I felt the next cycle. And weeks later, sure enough, the same symptoms crept up. I was at a holiday party for work when it got really bad. I took Advil, but it wasn’t helping (shocker) so I left the party early, somehow driving myself home through the tears. It was like clockwork how the same things started happening, except this time we were much more prepared on how to handle it.
Stevie rushed from work, picked me up from my apartment and brought me to the ER. I was still in immense pain but was able to get in a room and get an IV sooner, which helped prevent a lot of what I went through the first time. Stevie relayed to the doctor what all I was going through and the timing of it with my cycle. I remember that doctor saying it was definitely not just a coincidence, and it felt so good that someone was connecting the dots.
That’s when we started to get some actual answers. I was admitted into the hospital over the weekend to treat the pain. The doctor there suspected it was related to my menstrual cycle, and when I was discharged they told me to see my OBGYN. It was when I met with my doctor that she told me about Endometriosis, something I had never heard of until this all happened. This started me on a journey of really understanding my body in ways I never knew I needed to before. She gave me the care I needed at that time, and it did wonders for me!
Sometimes I think back to lying on the stretcher in that emergency room in New York, asking the doctor if it could be related to my period. It just made sense to me that it would be connected, but I thought to myself “what do I know?” I don’t blame the doctor for not thinking that was an option, although it would have spared me a lot of pain and and confusion and NG tubes. I think it just goes to show how we really have to listen closely to our bodies, in addition to going to our doctors.
We have to speak up when things don’t feel right. And we have to keep searching for answers. Doctors are tremendously helpful and I can’t even fathom their abilities and intelligence. But it’s ultimately up to us to take care of our own bodies – to do the research, pay attention to our symptoms, ask the right questions, and expect the highest level of care and compassion from our providers. It is a lot sometimes, but totally possible. I have learned through this to take some responsibility and to speak up, and it’s made all the difference.
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