Jonnie was diagnosed with Endometriosis when she was 20 years old. Now, 10 years later, she shares her story with us. It was a long journey before someone truly heard her. And she shares her story to encourage you to keep pushing until someone hears you, too.

Jonnie’s Journey:   I started my menstrual cycle on Friday the 13 in October of 2000. I was an avid swimmer and spent every summer competing with the neighborhood swim team. I assumed my lower back pain and fatigue was related to swimming, not my menstrual cycle.

When I was 14 years old I entered high school, took a full load of honors/AP courses every semester, joined the cross country and swim team plus the chess club. I did not realize my migraines, nausea, and growing fatigue was not related to the stress of a high school student. During the summer of 2007 my symptoms got worse to the point I went to the ER, but after all the tests came back normal I was sent home. If I started my cycle while at school I would throw up and need to go home.

I graduated high school and moved almost 5 hours away for college at Georgia Southern University. My roommates told me how birth control pills eased their menstrual pain so the following summer when I was back at home for the summer I saw an OBGYN for the first time in my life at the age of 19. I was prescribed a pill without discussing my options. At the follow up appointment with the doctor, she sat at the counter with her back towards me. I complained my pain wasn’t gone, but the doctor said as long as the pain had improved that that was important and she was not interested in trying other options.

I felt ignored and very small as though my pain was not real, or not a big deal.

When it was time to renew my birth control prescription, I made an appointment with the campus gynecologist at Georgia Southern because I did not want to see the previous OBGYN again. The campus gynecologist sat down in front of me, maintained eye contact the entire time I described my symptoms. Once I was finished she said, “It sounds like you might have endometriosis and I need to refer you to a qualified doctor who can help you.”

I found a OBGYN in Statesboro, scheduled a laser laparoscopy surgery 2 weeks before the start of the fall semester of my junior year in college. At the post-operation appointment the doctor showed me pictures of where she found endometriosis on my uterus and both ovaries.

Words of Advice:  There is more to my story, but what other endosisters should know is to NEVER stop talking about your pain and symptoms. You never know who will finally listen to you. It took the campus doctor at Georgia Southern to sit and listen to me so I could be referred to someone who could finally diagnose me.

The Last Word: Your pain is REAL no matter what family members, friends, or even doctors will tell you. Family members have repeatedly told me I am not praying hard enough for my illness to be healed. Friends mean well, but sometimes their comments still hurt. I was once asked during a pelvic exam if I was exaggerating the pain on my right side because everything felt structurally normal. Find your endosister community because no one will love and support you as much as another endowarrior.

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I want to send a special Thank You out to Jonnie for being brave enough to share her journey with us today!!  And what you’ve said about friends, families, and doctors hit home today. We’ve heard so much from so many who mean well. Thank you. So much. So may will need to read those words today. 

And if YOU would like to share your story, you can do so by clicking I would love to share it.  The best part about this disease is the strong network of love and support from our fellow EndoWarriors, and our friends and family, too.