Living with Endometriosis: Finding My Voice
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Before I was diagnosed with endometriosis, I was convinced that having painful and heavy periods was normal. My friends never seemed to have it that bad every month, and they also didn’t bleed or experience pain in between their periods like I did.
I started going to doctors for the pain and heavy bleeding in my teens and I was put on birth control, but it didn’t help. It seemed like doctors were just gaslighting me every time I tried to explain what was happening to me. They made me feel like the pain was all in my head, and I believed it. I was also getting misdiagnosed with colitis, celiac disease, kidney infections, fibromyalgia, and other conditions that didn’t match how I was feeling.
Finally, in 2017, after spending Thanksgiving in the hospital due to excruciating pain, a gastroenterologist listened to me. He was the first doctor to suggest that I may have endometriosis. Once I came home from the hospital, I immediately scheduled a diagnostic laparoscopic surgery, a procedure to find the cause of pain or growth in the abdomen and pelvic area. My husband researched the condition so I could be prepared to handle the test’s results.
Getting a Diagnosis
After 20 years of debilitating pain, and numerous hospital stays, I was diagnosed with endometriosis on January 4, 2018. During the procedure, some of the growth was removed via ablation, which destroys tissue in the uterine lining. At 32, I didn’t know what I was up against, so I found myself turning to Dr. Google for information because all I was given at the time was a small pamphlet and little explanation. I wanted to know more because I didn’t like not knowing. I also decided to not go on medication to suppress the disease.
Once I started to understand the illness, I felt comfortable enough to speak up about it. I shared my diagnosis on social media, and was lucky to find a community of women living with endometriosis. Friends reached out to me sharing their own experiences with the condition and even praised me for being so open about it. I decided I would be a voice for the voiceless — I would be heard.
Speaking Up
I created @Endo_Jenn on Twitter not long after my surgery in 2018, because at the time I felt that was a good platform to share my story and experiences, and connect with like-minded people all over the world. Turns out I was right: In just one month, I gained a few hundred followers, and today, I have over 2,000. Over the years, my page has featured endometriosis stories and resources, and I’ve also shared my experiences living with other health conditions, multiple sclerosis and trigeminal neuralgia.
The more I engaged with the Twitter community, the more it pushed me to dig deeper into advocacy. I was helping others as they were helping me. I’ve also had the opportunity to participate in events that help raise endometriosis awareness; among them is the Endo Tweet Chat hosted by Everyday Health. Each year, this chat brings patient advocates together to discuss issues and challenges affecting the endo community.
After living with endometriosis for six years, I still continue to research and learn everything I can about the condition. I tell everyone to never give up fighting and never stop learning. I accepted my diagnosis quickly, thanks to my positive mindset and outlook on life.
Meditation has been a big help for me when it comes to staying positive as well. Sitting alone in silence is so peaceful — and sometimes we all need a little peace in our lives.
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