Alex's Story
Waiting over 10 years to find the answer to their questions, Alex (they/she) is a 29-year-old teacher that has opened up about their difficult endometriosis story and how it solved their “medical mystery”. From misdiagnosis, mistreatment and dealing with other illnesses on top of it all, read on to discover how Alex managed their endometriosis journey.
The First Symptoms
I was 16 when I first had symptoms, but at the time, I didn’t even realize it was a symptom. I had my first period at 16, which was heavy, painful, and lasted for two straight weeks. I didn’t have another period until I was 21. Doctors assured me that this was “normal” because I was an athlete, so I didn’t question it. In fact, I was so embarrassed about the fact that I wasn’t having a period like all the other uterus-owners around me–and it wasn’t something my family talked openly about–that I kept my menstrual concerns to myself for many years.
I noticed pain with sex for the first time when I was 20. In my mid-20’s, I started to experience some pretty extreme digestive issues that got progressively worse despite trying many different treatments. In 2020, at 27, I started to notice increased and constant pelvic pain, as well as more frequent and debilitating extreme fatigue. I started to have more frequent stabbing pains in my lower abdomen, and a constant point tenderness that spread from around my right ovary and eventually to the left side. The fatigue was so bad that I would spend days moving from my bed to the couch and back to the bed; thankfully I was teaching from home during the worst of it and was able to continue working despite these symptoms. Things got progressively worse over the next year, and I had to take a medical leave from work to focus on my health. In December 2021, at age 28, I started noticing significant thoracic symptoms. These symptoms included pain in my chest, ribs and upper back, shortness of breath/light-headedness and recurrent pneumomediastinum.
Dealing With Doctors…
The first time I saw an OBGYN I was 22 and was having increased pain with sex. The doctor briefly felt my abdomen, then took one look at my chart and saw that …
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“For a disease that is already under-researched and not well known about by most, that added feeling of isolation was something that definitely took some time for me to process.”
