I have been suffering from painful periods since I was 11 years old. I would get extremely sick. Missing at least of 2 days of school every menstrual cycle. I’m 35 now, and to this day I remember how severe the vomiting and nausea used to be.
Back then, I saw a primary care physician who only prescribed Ibuprofen and nausea medicine. I was told that it was just bad periods and apart of being a woman. I wasn’t referred to an OBGYN until 11th grade.
I continued to have debilitating pain throughout the years and into my twenties along with many symptoms. Acne, chest pain, nausea, diarrhea, constipation, excessive sweating, headaches, vomiting, and cramping (I’m sure there are more that I’m forgetting.) I saw different OBGYN’s and tried many treatments. Not one doctor suggested the cause to be endometriosis.
I wasn’t diagnosed with endometriosis until I was 25. I was watching TV and saw Tia Mowry discussing endometriosis and describing her symptoms. I was in shock hearing someone else describe symptoms so similar to mine. I tried searching the internet to explore more, but the word was so foreign to me. That I couldn’t even figure out how to spell it. After tons of internet searches, I immersed myself into research and tried finding everything I could.
From there, I made an appointment with an OBGYN to discuss my treatment options. At the time, I thought my best option was to have a hysterectomy. I was only 25, but I was desperate and in excruciating pain every 2 weeks. I would learn much later that even a hysterectomy wouldn’t stop the pain. Of course, my doctor was against it, stating that I was too young. That I might meet the man of my dreams and want to have children later. This was after telling her I never wanted to have kids.
Imagine that. A doctor making a decision about my healthcare based on a husband I didn’t have. Oh, and 10 years later, I still don’t have that husband and still don’t want any children. It’s almost like I knew what I wanted and could make a decision for myself. Go figure.
After my official diagnosis via laparoscopy. I continued to work with my OBGYN testing different treatments. I’m pretty sure we tried every available treatment we could. Unfortunately, nothing worked to improve my symptoms and with each year that passed, I got even more sick.
As the years passed I got to a point where I could no longer work. I was in debilitating pain every single day barely able to get out of bed. I was scared, exhausted, frustrated, and began to lose confidence in the abilities of OBGYN’s. I searched and found a surgeon in my area that focused on more difficult cases. I knew my endo was bad based on the amount of pain I was in. I had no idea how severe it had actually gotten.
On my 4th surgery, my surgeon found my organs fused together. The endo adhesions covered and stuck my ovary, a cyst, bladder, ureters, bowel, and part of my kidney together. Six weeks later I would undergo another surgery to remove my uterus. I felt some relief hoping that my health would start to improve. Unfortunately, that wasn’t the case and my health would start to decline even further.
Since those surgeries I’ve had 4 more. Multiple bladder treatments, countless procedures, gallbladder and appendix removal, and a lumpectomy. I have seen more doctors that I can count.
When we discuss endometriosis, sometimes we fail to mention the additional disorders that develop alongside it. I’ve been diagnosed gastroparesis, fibromyalgia, interstitial cystitis, neuropathy, breast cancer, and recently developed liver and pancreatic issues. While I can’t prove that any of these disorders are directly tied to endometriosis – it is certainly suspicious. As I’m typing this, my body burns from the inside. My tail bone aches and burns, while pain shoots from my hips down the sides of my legs. It’s never ending.
Reading my story, one might think I’ve experienced a lot, especially at my age. The reality is that my story isn’t unique. So many people with endometriosis have similar stories. We oftentimes fall through the cracks of the medical system. Many doctors don’t understand us. Even worse, some choose not to understand us. We’re often passed on to the next specialist so frequently that we end up going in circles. Our pain is severe and can limit our mobility. Unfortunately, in a country where endometriosis isn’t recognized as a disability, we often face financial burden.
Doctor’s visits, surgeries, alternative treatments, and more can be expensive. Especially when our illness keeps us from maintaining steady employment. Many times we feel lonely and misunderstood by those closest to us. We have an extremely poor quality of life. Which falls in line with our increased risk of suicide and self harm.
I can’t begin to express the amount of trauma and pain I experience on a daily basis. It’s unimaginable, and at a level that no one should have to experience. Especially every moment of every day.
I pray that sharing my story encourages others to share their experiences as well. That those in future generations receive the care they deserve.
In the meantime, my message is simple. We matter, our pain is real, and we deserve to be seen, heard, and treated with dignity.