Do you ever feel like your body betrays you? One of our Ambassadors shares her story of overcoming physical obstacles to find her new fit and keep moving forward!
By MMF Ambassador Sarah Kane
I’ll never forget the first day I was in so much pain I couldn’t stand up straight to walk. Or how once a month I would wind up in my high school nurses office because I was nauseous. Or the day that I barely made it down to the dining hall to eat, and the card clerk told me how pale green I looked. Or when I couldn't eat my Thanksgiving dinner, and instead curled up in a chair with a heating pad.
I was 24 years old when I learned that all of these moments were related to the same condition: endometriosis. I first heard about endometriosis from one of my college friends. It is a condition that impacts 1 out of 10 women in their reproductive years and happens when the tissue that lines the uterus is also growing outside the uterus. It does not always cause symptoms, but it can cause extreme pain, cysts, scars, and other problems.
I am part of this statistic and on November 30, 2011, I had a surgery that completely changed my life. This is my story.
Getting My Diagnosis
While my symptoms started when I was in high school with nausea and severe fatigue, the timeline to getting diagnosed with endometriosis started after I was out of college.
I woke up one day in August 2011 with so much abdominal pain I could barely walk. I somehow made it to work, just to have my coworkers tell me I looked pale and I needed to see a doctor or go home. I just chalked it up to severe cramps/period pain, took Midol and the pain became tolerable enough for me to make it through the day.
Over the next few days the pain decreased, but my grandmother had made me promise to go to the doctor so I did. After pushing around my abdomen and checking for things like appendicitis, the walk-in doctor couldn’t determine the cause of my pain. So he sent me home and said if the pain came back they would send me for an ultrasound.
Two months later I ran a 5K with my best friend and was in severe pain again, especially if I twisted a certain way or pushed on my abdomen.
Thankfully my friend has a doctorate in physical therapy and she started asking me some specific questions, such as "is the pain cyclical?" (yes!) She became concerned that I might have an ovarian cyst.
When I got home I went straight to the doctor’s office and they sent me for an ultrasound. The ultrasound revealed that I had a 2.5 inch "complicated cyst." A few days later I met with an OB/GYN and had another ultrasound. The doctor told me that not only did I have a cyst but I had endometriosis, and pretty severely (4 on a scale of 5). He was surprised it took me until I was 24 to discover this and indicated that I must have a really high pain tolerance.
Due to my case being so severe, I needed to schedule a surgery ASAP to remove the lesions. It was too late for birth control/preventative medicine to help. So within a week of getting my diagnosis, I was scheduling a laparoscopic surgery.
Needless to say, it was very overwhelming. I was scared that the cyst would cause problems with my ovaries and I wouldn't be able to have kids, or have other complications. My mind just spiraled out of control to worst-case scenarios. After stressing for a couple days I realized that I needed to calm down and just deal with an outcome if and when it occurred.
Following my official diagnosis, the pain only worsened. It would last for a week or more now. Knowing that I had a surgery scheduled in the near future helped me mentally get through the pain. But on Thanksgiving I was in so much pain I barely ate dinner and wound up curled up in a recliner with a heating pad and Ibuprofen.
November 30, the day of my 2 hour surgery, my parents came with me to the hospital. I remember being wheeled out to the surgery room and within 30 seconds the anesthesia hit and my next memory is waking up in the recovery room. My parents told me the surgery went really well. When my doctor had gone in to "clean everything out," he discovered that my cyst had burst (which was why I was in so much pain a few days beforehand!) and my appendix had become inflamed. So they removed my appendix as well.
The good news was my insides were now “clean” and I could focus on recovering.
Road to Recovery
I was released from the hospital around 7pm, and my mom was gracious enough to stay with me in my apartment so I could recover in the comfort of my space. The first few days of recovery consisted of me only moving from my bed to the couch or bathroom. But each day I got stronger and kept trying to walk more.
It took 4-5 days before I could walk straight. I had to be careful with how I moved due to stitches in the 3 incision sites. Stairs especially had to be taken slow since the incisions were near my hip bones. I put a footstool by my bed to help me get in and out without lifting my legs high.
Two weeks after surgery my stitches were taken out and I was so anxious to get back to normal movement and running! I was frustrated because a muscle was catching in my abdomen and it created a lot of pain. It turns out I had a muscle knot, a common issue for thinner patients according to my doctor. Every day I had to spend time massaging it out.
It took a month after my surgery before I could run 2 miles. I remember grinning so much that you would have thought I just won an Olympic medal! I was looking forward to running my first half marathon four months later. I am happy to say that I was able to successful train for and complete that half marathon in 2 hours and 19 minutes.
Bumps in the Road
Despite this successful run, the 12 months following my surgery took quite a toll on me. While endometriosis can’t be cured, the best way to keep it in check is with birth control, as estrogen is what "triggers" the growth of the lesions. So the best option is usually to take continuous birth control.
Unfortunately, the birth control I was prescribed caused me to become VERY emotional. After trying 6 different types, I didn’t recognize who I was anymore. It became so hard on me that I was willing to stop taking the birth control and have another surgery rather than go through this medicated emotional roller coaster.
I ended up seeing a counselor and after a discussion with her and my GYN, I stopped taking birth control for a few weeks. Within 3 days I felt a cloud lift from my head. I felt so much better! While it was still tough to navigate relationships when I wasn’t at my finest, it felt good to have a confirmation that the intense problems were related to the medication.
After more discussion with my GYN I was prescribed a very low dose birth control, and it’s been the perfect fit for the last 7 years!
I am happy to share that my annual exams and ultrasounds continue to come back "clean." I feel I have found a good balance of birth control, staying active, and living a healthy lifestyle. I celebrated my 8th anniversary in November 2019. Endometriosis no longer sidelines me from holidays, physical activity, or being able to work.
While I know of other women who continue to experience pain with this condition, I am grateful for my best friend who asked me the right questions, for the ultrasounds that gave me answers to be correctly diagnosed, for my skilled surgeon, and for a GYN who worked with me to help me find a good balance to keep moving forward.
Endometriosis has no cure, but it can be kept under control and sufferers can continue living a healthy and active life. I am proof of that!