This is a firsthand account submitted through SWHR’s Share Your Story portal, as part of SWHR’s Women’s Health Perspective series.
My story with endometriosis is still being written. I started my period at ten years old, and I can’t remember a time that my periods were not painful. Each time I complained to anyone that would listen, I was told that it was normal. So, I started believing that this was part of my lot in life. So, I started masking my pain. Soon, it wasn’t uncommon for my body not to respond to the painkillers.
In 2022, I noticed that I started having pain in my back and sometimes my chest. I was very familiar with abdominal discomfort, but this felt different. After a visit to the doctor, my gynecologist explained that I had a lot of fibroids and an extremely large endometrioma on my right ovary. She was worried that the endometrioma could lead to torsion and actually recommended that I remove the entire ovary. Being that I was newly married at the time and hoping for kids, that recommendation was too aggressive for me. I sought a second opinion which led me to getting my first gynecological surgery in December of 2022.
The journey to my December 2022 surgery was a scary one. I found out that I had a host of other gynecological issues beyond endometriosis and fibroids. Due to these issues, I couldn’t even have the procedure necessary to freeze my eggs. The reproductive endocrinologist recommended that I get surgery first. The surgery in December was somewhat exploratory because I was clear that my fertility had to be preserved. Luckily, my doctor did his best and removed as many fibroids, cysts and endometriomas as possible but he did leave a fibroid (that was close to other gastrointestinal organs) and told me that the endometriosis would be back. I was finding out the hard way that there is no medicinal cure for endometriosis!
In 2023, a few months after surgery, my husband and I tried for a baby. My stomach was getting more bloated than expected and I started experiencing bladder issues – similar to what I had experienced pre-surgery. However, my overall pain symptoms had improved. In October 2023, after seeing my gynecologist, I was told that the fibroids were enlarged, I had adhesions (from endometriosis), polyps, and fluid buildup, and my bladder was in the wrong position anatomically. I was shocked that in such a short time post-surgery I could have experienced all of this again and then some. I prayed, I researched endometriosis specialists, and I started weighing my options. Even beyond my desire to grow my family, I knew I had to do something to improve my quality of life and stop things from getting worse.
Now, I am diagnosed with stage 4 endometriosis, and I have another surgery coming up soon. I know the surgery will be complicated and all outcomes cannot be predicted. I just have to trust in the specialist, in the advocacy that I have done for myself, and in the grace of God. I am a forever optimist, and I look forward to future chapters in my story.