my endo story
I’ve had a lot of people ask about my experience with endometriosis. Here’s a summary of my past 9 months.
I had suspected that I had endometriosis since I was 15. Nothing showed at that age, but the doctors had told me it might develop later.
In December 2023, I was lying down talking with a friend when I happened to feel a round shape in my abdomen. You could physically feel 3 sides to this round object. At first, it didn’t hurt, but the next day it started to become painful. The first ER that I went to took 8 hours and still never saw me. At that point, it was 3 am and I ended up leaving to go to a different ER. My pain had jumped up dramatically throughout the day.
The second ER saw me and took me for an ultrasound. They were easily able to see a large mass. They discharged me the next afternoon but said if the pain got worse, I needed to come right back. That evening the pain spiked again and so back to the ER I went where they operated an emergency surgery.
The surgery was extensive and took 5 hours. They discovered that I had a mass measuring 12 cm in diameter, but when they removed it, they discovered a second mass behind it measuring 14 cm. For comparison, a newborn baby’s head is around 10 cm.
Because of the size of the masses and because I continued bleeding, they were unable to complete the operation laparoscopically and so my healing took very long. In January I went back to work and attempted to resume regular life, but there were days when the pain was extreme. I ended up back in the ER several times, where they could see two new masses had already formed in the month during which I had been recovering from the first surgery. Unfortunately, since there is no cure for endometriosis and it was still so close to my last operation, they held off on operating as long as they could. One evening the pain became extreme, and that time they ended up performing my second emergency surgery. They believe that one of the masses burst which caused that level of pain.
The surgeon who operated on me was wonderfully supportive and commented on how severe my case was. There was a medication she wanted to put me on to hopefully pause the growth of my endometriosis. Unfortunately, the insurance company denied it twice. My surgeon also recommended Dr. Kanayama - an endometriosis specialist in New York.
For several months I tried my best to just keep functioning in the pain. I realized there was little to nothing the ER was able to do for me, and the medical bills made it difficult to keep going. I went three months with no visits, although there were still many days I was in extreme pain.
This summer I was able to schedule an appointment with Dr. Kanayama. God truly worked mercifully in the timing, because two weeks before, my pain started to become consistently unbearable. A week before my appointment I ended up back in the ER in excruciating pain. If I hadn’t been scheduled to see Dr. Kanayama they would most likely have operated, but because of my appointment with him the goal became to hold me over until I could make it there.
When I made it to my appointment with Dr. Kanayama his first words during the exam were “Oh wow”. He and the nurse were both stunned at how extensive my condition was. On the ultrasound, he could identify 8 different masses. My organs were all crammed together and out of their places. He was shocked as to how severe my case was at such a young age.
I was able to have surgery scheduled for that Friday in Connecticut. The operation was supposed to be 3 hours.
My surgery ended up taking 5 hours, again due to how severe my condition was. Dr. Kanayama removed 300 spots (500 if you counted all the tiny individual bits). For comparison, 16 spots is considered a lot and 40 is when you are considered Stage 4.
Because of how intense my case was, I am currently at the 50% mark in my recovery. I can already say, however, that my pain is dramatically healed. I woke up from the surgery, and while feeling the pain of surgery it was different already from the normal pain I was used to living in.
I am still healing, but currently, I am more so recovering my energy levels. I have about an hour or two in a day where I am up to moving about, and the rest of the day I still spend lying down. I am allowed to walk for 10-20 minutes at a time although I still need to be careful not to overdo it. It will be another month before I am fully cleared to return to regular life.
Needless to say, this year has not gone the way I would have liked it to. While I had experienced many symptoms of endometriosis for years, it felt like one random Friday my physical health suddenly imploded. Because endometriosis cannot be seen it is a struggle to understand what someone is really going through. I wrestled a lot with my own lack of grace for my body as well as living in a lot of fear of what others thought about me. My understanding of endometriosis changed massively through my own experience. I realized how uneducated I had been, and when I learned all the things that are connected to endometriosis I cried. If you are struggling with endometriosis, I want to remind you that it isn’t all in your head, what you are going through is real and valid.
I have seen God at work in the lessons He has been teaching me throughout this. There have been so many times I have had to run back to the fact that He has a plan for this, even when I can’t see it. He has provided for me in miraculous ways this year in moments where I was struggling to see hope. I won’t pretend that this hasn’t been hard, but I don’t know how I would have survived this year without clinging to Jesus. I promise - He sees you, He sees your pain, and He isn’t going to abandon you here.
Even when the pain is severe and I can’t see the purpose, I will declare that He is good. We don’t always get to know the reason, but I am determined that I will continue to cling to the truth that He is good.
