Today, November 30th, 2016 marks the 5 year anniversary of a surgery that changed my life.
I have been thinking about how I wanted to share my story for months, and whether I should at all but I was inspired to share due to this podcast.
Not many people outside my family and close friends know this story, but I wanted to share in case it helps one other female.
What lead to my surgery started at the end of August 2011, I woke up one day with so much abdominal pain I almost couldn’t walk. I made it to work just to have my coworkers tell me I looked pale, that I needed to see a dr, etc. but I thought it was just cramps/period pain so I took Midol and the pain became tolerable.
Over the course of the next few days the pain decreased but my grandmother made me promise to go to the Dr, even though my pain had gone away I went so I could say I did. The Dr at the walk-in checked things out but they didn’t think anything was wrong, especially because I wasn’t in pain anymore (it wasn’t appendicitis). They told me if the pain came back they would send me for an ultrasound. But they probably thought I was a hypochondriac going to see them when nothing was wrong.
The next month I didn’t have as much pain so I didn’t think anything of it. In October, after I ran a 5K with my best friend and I had some more pain and after a few questions from her (a now Dr of Physical Therapy) she asked me if the pain was cyclical because she was concerned I might have a cyst. So I went back to the doctor and based on their previous notes they sent me for an ultrasound. What was found from the ultrasound was a 2 1/2 inch “complicated cyst”. I was recommended to go and see an OB/GYN to get more analysis on the results. When I saw the OB/GYN I had another ultrasound done and was told that not only did I have a cyst but I had endometriosis. I had heard of endometriosis from a friend of mine from college who had recently also had a surgery. But other than that I didn’t know what it meant.
For those who aren’t familiar with endometriosis it is a condition which “many women have during their childbearing years. It means that a type of tissue that lines your uterus is also growing outside your uterus. This does not always cause symptoms. And it usually isn’t dangerous. But it can cause pain and other problems” (see more here).
When I met with the doctor he told me that my case was so severe (4 on a scale of 5) that I needed to schedule a surgery ASAP to remove the lesions as no birth control would help. He was actually surprised that it took me so long to come and see him, indicating that I have a really high pain tolerance. So within a matter of a week time period I went from feeling fine to scheduling a surgery. It was very overwhelming and I was scared that the cyst would cause problems with my ovaries and I wouldn’t to be able to have kids, etc. My mind just spiraled out of control to worst-case scenario. After stressing for a couple days I realized that I needed to calm down and just deal with and outcome if and when they occurred.
I scheduled the surgery for November 30 and knowing that I had a fix in the future helped me get through some painful days. Over the next month the pain worsen and on Thanksgiving that year I was in so much pain I barely ate dinner and wound up curled up in a recliner with a heating pad on my abdomen and had taken Ibuprofen. The only thing that got me through was knowing I had an upcoming surgery that would (hopefully) fix the problem.
On the day of my surgery my parents came with me to the hospital. I was scheduled to go in at 9am and it would only take about 2 hours, but was dependent on how severe everything was. Once I got prepped for surgery, I remember being wheeled out to the room to surgery, within 30 second the the anesthesia hit me and then my next memory I have is waking up in the recovery room and feeling like I had to go to the bathroom haha. The surgery went really well but it turns out my cyst had burst (which was why I was in so much pain a few days beforehand!) and my appendix had become inflamed so that was removed too. But my insides were cleaned out via the laparoscopic surgery.
My recovery took 4-5 days before I could walk straight up and my body was functioning properly. I had to be careful how I twisted and couldn’t lift anything heavy for a few weeks due to the stitches. Stairs were tricky as the incisions were near my hip bones, and I had to put a footstool by my bed so I didn’t have to so high to climb up. I was glad I lived on a first floor apartment, and my mom was able to stay with me for a few days.
But each day I got stronger and kept trying to walk more. I was so anxious to get back to running. But I became frustrated because even after I got my stitches taken out I was having a muscle catch in my abdomen and it created pain. When I saw my Dr about it, he said because I was so thin, a muscle knot can be a nuisance, so I had to massage it out. Finally after about a month from my surgery I was able to run about 2 miles and you would’ve thought I just want an Olympic medal. I was so ecstatic and so excited because I was looking forward to running my first half marathon and about five months.
I was able to successfully trained for and run my first half marathon in May 2012.
Throughout 2012 I still experienced some abdominal pain, but nothing to the extend it was. I was told it was the leftover small lesions that a surgery couldn’t get but eventually they would resolve themselves. In order to keep my condition at bay I was prescribed birth-control pills. This was meant to keep my estrogen levels low to prevent lesions from forming again. Over the course of the next year I ended up trying 5 different kinds of birth control as I tried to find one that “fit”. That was probably the biggest struggle of my recovery, I became very emotional, I didn’t recognize the person in the mirror and I didn’t feel like myself. After working with my Dr we were able to determine a low dose pill that kept my condition under control but didn’t make me feel emotional and helped my body.
I’ve been on one prescription since January 2013 and things of been great since. I have annual check ups with ultrasounds and everything has continued to be good. As a result of the surgery I no longer have days where I’m curled up in bed in pain and exhaustion. I no longer have nausea like I used to, I can run, lift, kickbox, etc, without having to stop due to pain.
This surgery truly changed my life and I am so grateful to my best friend for recognizing my symptoms so I could be properly treated. Endometriosis has no cure, but can be kept under control, and I am proof of that.
Do you or someone you know have endometriosis?
This is a pretty quick recap of my story but if you have any questions I would be happy to answer any. I didn’t want this anniversary to go by without acknowledgement.