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College, COVID, and a Chronic Condition: Living with Endometriosis: Caeli Jojola Endo Story

College, COVID, and a Chronic Condition: Living with Endometriosis: Caeli Jojola Endo Story

In 2014, I went on my seventh-grade field trip to a local science museum. What I thought would be a fun day out of school turned into a disaster. I felt a sharp pain in my lower abdomen, so intense that I became nauseous and couldn’t stand. One of my teachers took me to the nurse’s office at the museum, where I stayed for the remainder of the trip. Little did I know this was the beginning of what is now a nine-year struggle with debilitating pain and few answers. 

My mom researched and my doctor prescribed everything under the sun to help me—vitamins, diets, essential oils, birth control, physical therapy, prescription medications—but to no avail. I continued to have debilitating period pain. I went to the emergency room twice during high school for the pain, and the doctor told me it was normal to have period cramps. Another doctor even suggested that I was constipated. It was frustrating to miss classes, sports, and social events each month, lying at home in tears. 

Consequently, from such a young age, I felt I had no control over my body. This was compounded as an incoming college freshman in 2020 when COVID restrictions made it difficult to adjust to college life as many events weren’t allowed. With these regulations and my monthly pain, I felt isolated. It was frustrating and awkward to email professors, trying to articulate that I missed class or an assignment because I was on my period. I had anxiety about missing events that fell during my cycle, embarrassed to tell people why I couldn’t come, and feared people thought I was exaggerating. Endometriosis came with a lot of physical, mental, and emotional implications that made it even harder to meet the demands of college in terms of coursework, social activities, and maintaining a healthy lifestyle. 

So, in May 2021, immediately following my freshman year, I had a laparoscopy and was diagnosed with endometriosis. I wasn’t even nervous about the surgery because I was so hopeful it would allow me to live pain-free. While the surgery was ultimately unsuccessful in relieving the pain, it was still reassuring to have a medical diagnosis—something to legitimize the pain I had been living with. I think that is such an overlooked aspect of living with endo or any chronic condition—the mental load can be just as challenging as the physical pain. But I continued to deny this reality due to the stigmatization of menstruation. I just didn’t feel comfortable talking about it outside of my family.

Last year, however, I came across a blog post about a woman’s experience with endo, and it changed my life. Her story was relatable—the cyclical pain, unanswered questions, lack of research, and frustration. I felt seen. Since then, I’ve come to terms with the reality of endo and its continued effects on my life and future. And frankly, some days suck. I still have three days a month when I have to take prescription painkillers and can’t get out of bed. But my perspective is radically different. I can accept the pain for what it is—pain and nothing more. It does not define me or my life. And I’ve since learned it’s okay to ask for help, explain myself to professors, openly talk about periods, and post endo content on social media. I’ve become empowered and proud that other women are doing the same because each post or interaction can launch overdue conversations about women’s health, pain management, and personal experiences. 

I had another laparoscopy in December 2022 with a specialist in St. Louis. It was a positive experience, and I am waiting for my body to heal to see if the surgery was successful. During my post-op appointment, my doctor said, “We found a lot more endo. Congratulations, you’re not crazy!” 

I cried.

After nearly a decade of debilitating symptoms, knowing my pain is legitimate is still so validating. I’m wrapping up my junior year of college and hoping to start more conversations about endo and women’s health. I’m hopeful that in partnership with organizations that provide resources like EndoFound, and with bold individuals willing to share their stories, we can work toward period destigmatization and a cure for endo. Because normal periods shouldn’t be painful, and painful periods shouldn’t be normalized. 

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*Patient stories submitted to EndoFound.org are the patient's views, not necessarily those of the foundation. All testimonials are from real patients, may not reflect the typical patient’s experience, and are not intended to represent or guarantee that anyone will achieve the same or similar results.