Eleven Years Old
I was 11 years old in 6th grade. It was a crisp fall day; I was in Gym class running the mile. I got my period for the first time, and I knew what it was right away. I went to the nurse and was forced to continue running. I wanted nothing more than to lay down on the ground in the fetal position; I was in so much pain. I remember thinking, is this normal? Do I have to deal with this every single month?I missed the next day of school. I could hardly get out of bed, I vomited and had extreme nausea. It was horrid. I asked my Mother and Grandmother about it and was told, this was normal, and they had terrible cramps too at my age.
Fourteen Years Old
I couldn’t deal anymore, for three years I missed school 1-2 days every month, I remember laying on the floor next to the toilet, pale as a ghost, I could hardly move.
I finally went to a Doctor and worked up the courage to bring up my concerns about my pain. I was told it was indeed “normal” but to help with the pain at the age of 14, I was prescribed birth control as a way to suppress my symptoms and narcotic medications for the pain every month. I remember the first time I took the narcotic meds; it made me feel high as a kite, a feeling I had never experienced before, I hated it, it made me feel so light headed and loopy, I threw the bottle out and found other ways to cope. Means that I continue to this day…Ibuprofen, the hottest temperature baths you can possibly imagine, and the hottest hot heating pads. So hot they leave temporary burn marks on my skin.
Fourteen Through Eighteen
I revisited my Doctor yearly, with the same complaints, and I was given the same mistreatment, with never even a mention or thought that something else could be wrong. I was switching birth control once if not twice a year, because, none of them did the “job.” I eventually learned to start telling my Doctor; I am not interested in pills as an answer. Soon after that, I realized it was pointless even to bring up my concerns and complaints, as it got me nowhere. My symptoms started stacking up at this point. Painful periods-Killer Cramps-Nausea-Vomiting-Severe back pain-Fatigue-Migraines-Heavy bleeding-Long periods sometimes reaching two weeks. I remember being in gym class and asking my friends if they dealt with bad cramps and most of them replied “I hardly feel anything” “it’s not that bad, get over it.” Leaving me to question my sanity at this point. Thinking to myself “is the pain as bad as I think it is?”, “am I just weak?”
Eighteen Years Old
I started experiencing gastroenterology related symptoms at this point. Not realizing it was related to my period-related symptoms. Up to this point, my pain was leading up to and around the time of my period, never really outside of that time until now. Thus the reason I never put two and two together.
Eighteen to Twenty Five
I was a working girl; I would lose 2 to 3 night of sleep and often missed work. It was affecting my personal life in many ways, my relationships with people were suffering, I had to cancel on social gatherings regularly in addition to having to call into work usually, and if not, I just pushed through and was extremely miserable while doing so. It was affecting my personality and ambition in life at this point. I had so many goals, but my monthly pain always came to mind when I considered going after them.I continued in my early twenties to try different birth controls all with lackluster results and terrible side effects.
Countdown to the 2019 Minnesota Endo March
Twenty Five Years Old
Two months into my marriage, I decided to stop taking birth control finally. At this point, I had been on it for 10+ years and figured, that could not be good for my body. After all I had dreamed of having children since I was a child myself. My Husband and I were open to getting pregnant whenever the time was right, but we were not actively trying to conceive at this point.Initially, my periods off of birth control were about the same, and as the years went on, they got worse, with more symptoms being added to this list. At this point, I had not considered I had any condition, but I knew in the back of my mind something was not right, I ignored it and pushed through, because, I always thought I was crazy for thinking this. At this point I started experiencing pain outside of my period regularly. Random stabbing pain, and it continued over the years to happen more often.
Twenty Eight Years Old
It was June of 2017, my Husband and I officially began our journey to try and conceive. We wanted two children, and I wanted to be done with having children by the time I was thirty. We didn’t tell anyone we were trying because we didn’t want that pressure. We continued to be asked by friends and family “when are you guy has kids?” or “are you going to have kids” we just always tried to dodge those questions as much as possible. Usually saying “if it happens it happens.” As a Women who has dreamed of being a Mother since I was a child, and as a planner who has this whole family plan laid out that wasn’t going as planned, it killed me inside every single time this topic came up and was directed towards me. As the months went on, I tried not to get discouraged or stressed, but as much as I tried to avoid the secret feelings of sadness that washed over me every time I saw an announcement of friends being pregnant or having a child it did. It did hurt, and it does hurt, no matter how hard I try not to let it. Every time someone asks us, it hurts.
Twenty Nine and Still Not Pregnant
After a year of trying with no success to conceive I knew I finally needed to listen to that voice in the back of my head that I had been ignoring and go to the Doctor. I knew something was not right, I felt it in my gut. I just hoped I was wrong. I remember being in my early twenties and thinking about how I would likely have issues conceiving, I wasn’t sure why I just had a gut feeling, I ignored it until I couldn’t anymore. I told the Doctor I was trying to conceive, she asked about my periods, I gave her the run down. Since she was a new Doctor to me, I figured I should fill her in. She asked, “have you ever considered that you might have Endometriosis?”To which I replied “yes” only a month before this a friend of mine shared her story about Endometriosis and I looked up the symptoms, which I had all of the ones listed. Though I continued to think “not me.”
A river of tears started falling down my face; I could barely talk. It was in that moment I realized, this Doctor is confirming, I may not be crazy after all. Nearly twenty years of suffering came to a screeching epiphany. That maybe there was an answer for why I had to deal with so many debilitating ailments. … and then my Doctor informed me that 50% of Women with Endometriosis have Infertility and that very well could be the cause of my Fertility struggles. … and then my Doctor confirmed that I medically fit the Infertility category. As for the Endometriosis, that requires surgery to confirm. More on that in my next blog.
At this point I was experiencing pain daily, to varying degrees but enough to alter my social and work life. Some days struggling to even get off the couch due to pain and fatigue.
Interested in reading more…
The Minnesota Endo Warriors are thrilled to republish Jess’ story and encourage you to continue reading the rest on her blog. Check out her post My Story | Part Two | Surgery to continue reading her story. You can follow Jess on Instagram where she is celebrating endometriosis awareness months with great graphics and facts @EndoWonders.