Caitlin, 19 years old

Symptoms of my endometriosis began when I was 12 years old, but it was only after many years that the cause of my pain was correctly identified. Recently, I have become aware of the fact that one in ten women has some degree of endometriosis. When I heard this figure, I thought it must be too high. For, how can a disease that affects 10% of women garner so little public attention and even be difficult for doctors and experts to recognize? Yet, this is the sad reality of endometriosis—one in ten women affected and little being done about it.

Although I began to suffering as a preteen, it took four years of countless doctors visits and pointless procedures before I was finally correctly diagnosed with endometriosis. When I was 13, I went to the doctor because persistent lower abdominal pain was keeping me from participating on the cross country team. The doctor told me that the stomachaches were probably just due to stress, maybe precipitated by the transition from elementary school to middle school. Yet, when summer rolled around and I was still experiencing these “stress-induced” stomachaches, I figured that maybe I had been misdiagnosed. After all, for a 13 year old, summer is not a stressful time. So, what was causing the pain? I went back to the doctor, and this time they did an ultrasound. Unfortunately, most of the time, lesions caused by endometriosis cannot be seen on an ultrasound. Thus, my ultrasound came back clean. For the next two years, I was basically just passed from doctor to doctor and from specialist to specialist, all of who had no idea what was wrong with me. I even underwent a colonoscopy, which came up with nothing.

After almost four years of searching for a diagnosis, all I had was a prescription for birth control and the advice to eat more fiber. Meanwhile, I constantly had to rearrange my life to accommodate my worsening symptoms of endometriosis. I remember one summer I bought a new white bikini to wear to the beach. I happened to be on my period the day of the trip, but I decided to go anyway. I put in two super-plus tampons and figured that would be sufficient for an hour or two of swimming. It was not sufficient. Soon after arriving at the beach, I bled through my swimsuit. I remember going home early and crying in the bathroom as I tried to get the stains out. I knew that some women had heavier periods than others, but having to wear two super tampons at once and bleeding through them in an hour seemed especially excessive. I remember feeling so frustrated that nothing could be done to help me. All I wanted to do was have fun with my friends. I wanted to take back control of my own body.

Finally, thanks to a lot of help from my aunt, Professor Linda Griffith, who correctly identified my disease before any doctor did, I was able to get diagnosed with endometriosis. When I was 17, after bleeding for six weeks straight with intense pain, I went to see Dr. Ceana Nezhat, an endometriosis specialist, who immediately recognized what all the other doctors missed. A few weeks later I underwent laparoscopic surgery to excise the endometriosis lesions. Since then, I have felt a lot better and have been able to more effectively manage my symptoms. Now, I want to help other girls and women get diagnosed. I don’t want to think of 10% of teenage girls sitting in a bathroom crying wondering what is wrong with their bodies and why no doctor has been able to help them.