Fighting to Find Answers
When asked to write a little bit of my endometriosis journey, I didn’t really know where to start. So here’s Part 1 of my story.
Honestly, I feel like I’m one of the lucky ones. My endometriosis didn’t become debilitating until I was 35 years old. My endo showed up as liver and side pain in October of 2018. I originally thought it was a pulled muscle because it tightened up light a side stitch you would get while running. It would cause so much pain that I was unable to raise my arms, take a deep breath, or sit up straight. I went to see my doc, Dr. Bennett at Top Team Sports Performance to see what could be done to fix this “injury” and he sent me straight to my primary care physician because he knew it wasn’t a muscular skeletal issue.
I have a great NP, Josette Giuffrida that ordered me all the tests she could in order to figure out what was causing my issue. She always listened to me and supported me as I struggled to find a diagnosis. After an ultrasound of my abdomen and an internal ultrasound of my ovaries and uterus the only issue that showed up was ovarian cysts- so she sent me to an OBGYN for treatment. I made an appointment and the head of the practice told me it was just cysts and they would go away, but I should just ‘rest for 6 weeks’ to avoid any issues.
So as a marathoner and an active person, this wasn’t an answer that worked for me. I found a highly recommended OBGYN in Cornelius, NC and I got a second opinion. This OB said the same thing - all these issues were caused by ovarian cysts but I could continue activity as normal and we would “wait and see” if the pain continued.
During that time of “wait and see” I was in increasing amounts of pain for up to 15 days a month. I mean I run MARATHONS! I know what pain is, I put myself through pain for four and an half to five hours at a time during a marathon. I have given birth, and this pain was worse. I called the doctors office and told them I was in increasing amounts of pain and the nurse told me “If you are in that much pain, go to the ER.” So I did. I couldn’t breathe, I couldn’t sit up, I got there and had a panic attack because I felt like I was suffocating. After four hours and a CT scan, still no answers… So I was sent home with medications to ease the pain and muscle relaxers… Not helpful at all.
By March of 2019, I was becoming increasingly depressed and scared something was “really” wrong and they couldn’t find it. I started to have hip pain that caused me to not be able to sit for any amount of time. I work from home, so I was thankful I had an amazing manager that allowed me to clock out and take breaks to lay down whenever I needed. I’m a workaholic so this made me feel even worse - I couldn’t complete my tasks and check them off my list… I could barely run, and when I did it was for a few short miles. When I would run, the recovery was brutal, the pain went from dull to stabbing and ever present.
This pain led to more doctors. This time seeing my favorite Orthopedic PA-C - William Heisel at OrthoCarolina. He ordered an MRI with contrast. The MRI came back with a hip joint full of inflammation but no injury or explanation as to why. So later that week I headed in for a cortisone injection to help reduce inflammation and pain.
So after March and April and many visits to the OB, the doctor she said she would preform a laparoscopic surgery to remove the problematic cysts and look for any other reason for what I had been experiencing. So in May of 2019, the doctor did the laparoscopic surgery and said everything was normal in my abdomen and she didn’t remove the cysts because they would go away on their own. I was just out of surgery, groggy and completely confused. Wasn’t that the entire reason for this surgery?? Why would I even have this procedure if the cysts - the reason I was having all of these issues and couldn't function in life- were left in my body?! She did have one “exciting” discovery though. There was a spot on my liver and chest wall that she thought may be endometriosis.
That was my answer.
In my endless amount of research, ENDOMETRIOSIS was a diagnosis that would come up, but never really fit MY symptoms. I found one medical study discussing endometriosis in the upper right quadrant of the abdomen.
The last thing the OB told me was that when I came in for my follow up appointment she would prescribe a medication that “would clear that spot right up” and the endometriosis would go away. So I waited 4 weeks after surgery and went to my follow up appointment find out what miracle medication she was talking about. The medication was ORILISSA. I was devastated. Again, I my hours of research I had found only a few medications to “treat” endometriosis and none of them could cure it the way this OB had said it would. If you want to know more about this drug - google it. It’s not good. Among the many side effects: permanent bone loss, hair loss and early menopause. As a marathoner, bone loss wasn’t really something I was wiling to deal with so I asked for a referral to an Endometriosis Specialist. At this point, I knew this OB was not the right doctor for me and obviously didn’t have my best interests in mind….
I could go on for days about the appointments and the misinformation and the terrible doctor experiences I had while trying to get my answers. I am so lucky I did have a team that would listen and went out of their way to help. I will end this part of the story here, but I can’t put into words how hard it was to get the answers I needed. I spent more time going to doctors than I did working. I spent more time on my couch or in my bed from October 2018 to February 2020 than I probably have in my whole life. I felt like I lost my identity when I couldn’t run. Without running, I wouldn’t see my friends, and not many friends want to come join you on the couch… I wanted to quit - and when I say that I mean I wanted to go to sleep and not wake up. It literally hurts to type that, to admit I was in so much pain that I wanted to give up. But I told my surgeon I would tell my story so others NEVER had to go through all I went through. So here’s a part of it and if I can help one person fight to find their answers I will be happy. 🌺