An Open Letter to Myself

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As a philosopher once said, “The journey of a thousand miles begins with one step” (Lao Tzu). When I started this blog back in 2015, it became my means of taking that first step to understanding my chronic illness. In 2015, I was diagnosed with stage two endometriosis, which meant that my endometrium tissue had grown outside of my uterus. Although it was very poorly written, this blog helped me overcome the darkness and loneliness I felt at 16 years old. As I continued to blog, I found myself building connections with others of the endometriosis community. These connections helped me feel as though I was not alone in this endometriosis battle.

At the end of that year, I was informed that my new tested tissue samples were negative for endometriosis. These results meant that I was no longer able to be treated by the endometriosis center, nor could I participate in any trials or studies. After being told several times, “everything looks normal” or “you should be normal,” I began to believe there was nothing left that I could do. I knew I needed to start a new chapter of my life, one that did not involve surgeries, birth controls, injections, or steroids. Part of taking this new step involved deleting this blog, as I felt I could no longer own and operate an endometriosis blog without an endometriosis diagnosis. After deleting this blog and accepting there was nothing left I could do medically, I attempted to continue on with my life. I spent the next five years of my life trying to maintain my symptoms and pain the best I could. I graduated high school and continued onto college. But no matter what steps I took within this new journey, the pain was always with me.

Since that original “non-diagnosis” in 2015, I have been in and out of doctors offices. For a while, I felt relief after my major ablation. Although my periods were still abnormal, they were lighter for about a year. Yet, once that relief subsided, I attempted to find a new doctor to explain what illness or abnormalities I might have if I do not have endometriosis. After years of searching, my primary care doctor recommended I attempt to take another look at endometriosis, as she noted that my symptoms were beyond average. It was then in this past winter that I heard the term, “adenomyosis.”

In December of 2018, I was told by a local endometriosis specialist that I most likely had adenomyosis and endometriosis. At the time, I had never heard of such a term. Basically, adenomyosis is a very rare cousin of endometriosis. It is a condition in which the endometrium abnormal tissue grows within the uterine muscles. The specialist predicts that I have adenomyosis and most likely endometriosis, as my tissue samples originally tested negative for endometrial tissue. After I heard this explanation, it all made sense. This term made me feel less insane, for I now had a new term to give my symptoms.

Even though this diagnosis provided me with an explanation of my experiences, it did not solve my issues nor did it provide a solution. Despite the differences adenomyosis has to endometriosis, the solutions are the same: birth control, IUDs, or a hysterectomy. Throughout the years, I have tried eight different birth controls, Depo-Provera shots, steroids, and a combination of the above. All of these medications provided relief for about a month until my symptoms would return by the third month of the medication. Yet, even that period of brief relief came at a cost. With these medications, I experienced new symptoms, such as weight and breast gain, acne, severe mood swings, and depression. Due to the fact that these medications did not even work for a long period of time, I decided I was done with any form of birth control.

Therefore, I am at a stand-still. Maybe that is why I have decided to re-open this blog. Every doctor, no matter who, only has those three options for patients like me. And after my experiences with birth control, and the reviews I have read online, I refuse to do an IUD. This means that I am left with a hysterectomy. However, I have to wait until my 30s before I can find a doctor willing to perform one for me. As a result, I am left counting the years, praying someday I will find a source of relief.