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When My Pain From Endometriosis Was Brushed Off for 12 Years

Pain: one of my least favorite words. It reminds me of the struggles I have faced for over a decade. I was 9 years old when I started my period. It didn’t seem like a big deal at the time. In fact, my mom was over zealous with welcoming me into “womanhood.” It wasn’t until a few months later that the pain began. A few days before my cycle I would get very nauseous,the color in my face would fade to gray and I experienced horrible cramps. They were so excruciating that during my period I missed three to four days of school per month. My heating pad became my best friend. When I told my mom how bad the pain was she said, “Oh honey, I understand.” I was bedridden for days out of the month, too. I accepted this as normal thing because my mom did, too.

I never sought medical treatment because my pain ended when my period did. It wasn’t until I was 22 that the pain started and never stopped. It was located on my lower right side. It was sharp, twisting, gnawing and commanded attention. I went to the gynecologist searching for answers. She did an ultrasound and said that nothing was gynecologically wrong. She thought that it could be my appendix rupturing. I was ordered to go to the hospital for an outpatient CAT scan. The technician informed me that they would be using an IV contrast. I never had a contrast before, but I ignorantly obliged. She injected it into my vein and scurried into the booth. Seconds after being injected and put into the tube I started to gasp for air. I wasn’t visible to the tech and I was terrified. I couldn’t speak and started to lose consciousness. The only thing I knew to do was bang my arms against the machine, praying that help would arrive. I remember “blacking out.” Long story short I went into anaphylaxis. I was revived after one minute, but want to know what? No appendicitis. No answers, no nothing. I was a “healthy” 22-year-old girl.

I went on to see over eight different doctors until I finally said enough is enough. The diagnosis came after me pleading with my new gynecologist for months on end to perform a laparoscopy to see why I was having pelvic pain. After months of personal research, I was positive I had endometriosis. My gynecologist was very adamant about it. She bluntly stated, “You’re too young to have endometriosis.”  Endometriosis is a gynecological condition in which tissue similar to the lining of the uterus implants lesions on the outside of the uterus. This can cause pain similar to appendicitis, bowel problems such as constipation and or diarrhea, infertility, scar tissue and many other symptoms.

I was crushed because I knew I needed to figure out what was going on with me before things got even worse. I was barely able to eat and function in daily life. I took birth control pills for months to appease her. With no relief from the medication, my doctor scheduled me for the surgery. I was so nervous that I wouldn’t have anything wrong with me. Maybe she was right and I just had a low tolerance for pain? After a few hours in the operating room, I woke up foggy and anxious, waiting to hear the results. I was diagnosed with stage 4 endometriosis. I started to cry tears of happiness. After all the years of being brushed off by doctors, I felt so validated for the first time!

Being diagnosed meant I wasn’t imagining it and I had the chance to get better.

I was diagnosed 12 years after my initial symptoms. With endometriosis, on average it takes 10 years to figure out what’s going on because of a lack of knowledge in the medical community and the symptoms can be so similar to gastrointestinal issues. Only surgery can officially diagnose it.

Being diagnosed at 22 was tough. At that age, you’re supposed to be going out with your friends, having intimacy with your partner, going to school and working towards a career. For me it all came to a screeching halt. My plans to go to nursing school had vanished. I wasn’t able to attend due to the severe pain. Sex became so unbearable that I would bleed and cry and even end up in the emergency room.

woman with dark hair standing next to man wearing hooded jacket
Jacquie and her husband.

People innocently ask, “So, are you still sick?” or “When are you going to get a job?” These are all very honest questions, but the truth is, I truly don’t know. I have accepted that I may never be back to my “old self.” Instead, I have become a newer version of myself. I may not be able to attend events all the time, but I’m wise enough to know it is not my fault. I know my limits and take care of myself. Being chronically ill has given me the ability to appreciate my good days.

Support is one of the best things you can have, especially when you’re sick. My husband is my biggest advocate. He never let me give up without finding a diagnosis. I feel so lucky to have him in my life. Having an amazing team of doctors helps as well. I’ve had seven surgeries in the last three years and I’m slowly starting to feel as best as I can given my circumstance. Many women have multiple failed surgeries.

Since my last surgery, my life has improved. I currently go to pelvic floor physical therapy to help relax my tight muscles, see my specialist every few weeks to follow up and go to the chiropractor to help with my pain. There is no cure for endometriosis, but I take each day at a time and know that I am not alone.

The Mighty is asking the following: What’s the hardest thing you deal with as someone with a chronic illness, and how do you face this? What advice and words of support would you offer someone facing the same thing? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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