I’ve shared bits and piece of my story over the years here at A New Kind of Normal. I shared the struggle of redefining my womanhood after a total hysterectomy. I shared about my broken but blessed road to motherhood that followed. I’ve mentioned the moment of my initial diagnosis but not the moments that led me there.
It was the summer before my final semester of college. I would be doing student teaching at a local elementary school teaching K-5 music. That summer I kept busy as I worked at a bookstore and also helped my then-boyfriend (now husband) with his youth ministry.
As the summer wore on, something felt off. I could not put my finger on it but in my gut I just knew. I cried . . . a lot. My body just seemed to be in a constant state of exhaustion. I called John many nights in tears and begged him to come over and be with me. I know that people thought I was losing it (they just didn’t know that I knew) but I knew something real was happening.
By August the pain set in. It started in my lower back and eventually became a constant presence as I started my student teaching. I talked with my cooperating teacher who suggested that maybe I had a bladder or kidney infection. A friend gave me some bladder medicine to help while I waited for my appointment with the medical clinic near campus.
The appointment came and John was kind enough to come with. He sat in the waiting room as I was called back. I peed in a cup and waited patiently for the results. The doctor came in and gave me the “good” news that everything was clear. No bladder, UT, or kidney infection. We still had to search for a cause of the pain so the poking and prodding began. She asked for my medical history although outside of a bout of mono a couple years before there wasn’t much to speak of. She started continued to questions as she began pressing on my abdomen and that was when I learned where my ovaries where and boy was that a painful lesson in anatomy. She helped me sit up and grabbed a referral form to the women’s clinic next door as she was certain it was a “female” problem.
I left the clinic in tears. I needed my mom but she was 5 hours away. I had never been to a women’s clinic and the thought of going completely alone to see a complete stranger terrified me. God definitely intervened on my behalf. When I called to make an appointment, my only request was to see a woman so they set me up with Dr. H who happened to be new. Little did I know that I would be meeting my guardian angel! God knew exactly who I needed at that point in my life as a petrified 22 year old college senior.
I had my initial appointment a few days later. I left the school with a hug from my cooperating teacher and drove the 2 miles to the doctors office. If I could not have been greeted by a more thoughtful and pleasant staff if I had ordered them out of a catalog so it definitely helped ease my nerves. As I sat alone on the tablet in my stylish gown, my mind raced with questions. Dr. H came in with a warm smile and inside I breathed a sigh of relief as I knew I was in good hands.
We went through the typical barrage of questions. Then came the part I dreaded and had been avoiding to this point in my semi-adult life – the exam. She asked if I wanted to see everything she would be using and I politely declined. Major negative. I took a deep breathe as I placed my feet in the stirrups. My sweet nurse held my hand, stroked my hair, and gently said, “Sweetie, we can’t do the exam if you knees are together.” Oops.
The initial tests included checks for various types of infections and STDs (which is standard procedure). She asked about my monthly cycles. It was at that time that I took notice how they had changed and had gotten gradually worse over the last year and sometimes left me bedridden and caused some major GI issues. It was then that she mentioned the word “endometriosis.” I had no idea what that was. I had a vague memory of someone mentioning it at some point years earlier in reference to a family friend facing fertility issues but that was is.
I would go in a week later to find that all tests came back negative for infections. We continued doing tests looking for a cause. I had my first pelvic ultrasound and believe that I died right there on that table at one point during the exam. Surgery to scheduled to check for endometriosis within 4 weeks of my initial visit. On September 17, 2003 my journey with endometriosis began and continues to evolve 8 years and 5 surgeries later.
I tell you this story as it was during this time that I learned several things that would later form the basis of this blog.
1- Trust your gut. You know your body better than anyone else. I knew something was wrong. Some blew it off as stress of college or being plain crazy but I stuck to my guns until I received affirmation that yes there was indeed a problem. This has been a lesson that has carried me over the last eight years when not only battling endometriosis but fibromyalgia and celiac disease as well. Learning to become your own advocate is the best thing that anyone with chronic illness can do.
2- Find a Doctor You Can Trust. If something does seem right or you don’t feel like you are being heard, find someone who will listen. I got so extremely lucky on finding Dr. H the first time around (I did have to hunt for a good rheum though). She continues to be an amazing doctor and support in my journey (she has performed 4 out of my 5 surgeries and I swear knows more than any specialist I have seen). While many women bounce around to different doctors for years to find a diagnosis and relief (average length of time to diagnosis is 9.28 years per this survey), I received my diagnosis within a month. I continue to be affirmed that my pain is real and not something in my head. I am seen as a person not a case file or disease, even though pretty soon they are going to have to wheel my chart in on a cart.
These two things can put you on a path to finding a life more abundant despite your illness. We are strong and we can overcome. We may never be cured but we can continue to find joy. We may still experience pain but we can continue to have a purpose and a passion. Providing support and encouragement to others with chronic illness is my passion. I want others to know that they are not alone. I want others to know that they have a place to turn to cry, vent, and share a laugh when the times get tough. I may not have chosen this life with illness but I can chose to give God honor in spite of it and allow Him to turn something ugly into something beautiful!