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Endometriosis Awareness

rachel endo

176 million women live with endometriosis and I am one of them.

To me, this enigmatic and commonly misunderstood disease is a symbol of so much more than a simple illness. The mere utterance of the word ‘endometriosis’ unfurls within me a tangled web of sour resentments and acidic regrets that have been left to marinate for far too long. Paradoxically, it also serves as an emblem of resilience and strength, renewal and hope, that I wear proudly affixed to my soul.

I suffered from the debilitating symptoms of endometriosis (or ‘endo’ for short) for ten years before learning that the disease even existed. At first, they were minimal: painful periods and chronic fatigue. It wasn’t until I got married at 19 that new symptoms arose.  I discovered on my wedding night that having sex made me feel like I was being sliced open by shards of glass. A single miscarriage early on in our marriage was followed by years of devastating infertility. By age 25, the pain that I had previously felt exclusively during my period became more intense and invasive.  It was as if my abdomen and pelvis were encased in electrically charged barbed wire that sent shocking waves of agony up and down my body. Crushing fatigue made me feel like I was running through quicksand, my brain wrapped in cellophane, my eyes covered in cement. I was a new mother to two miraculous children but could barely take care of myself.

I dragged myself from one doctor to the next in a desperate attempt to be taken seriously. My life became a cycle of disappointment; escalations of anticipatory hope dissolving into abject despair, after being dismissed once again. I was misdiagnosed, mistreated, gaslit, ignored, and mocked. Each time I was told by a respected professional that the symptoms were “in my head” and that I “didn’t look sick,” each appointment that ended in a recommendation for antidepressants or therapy, and each condescending chide instructing me to “relax” caused small seeds of self-doubt to germinate in my mind. I began to wonder if I was actually having symptoms at all.

Then came the day when my experience was finally validated due to exploratory surgery and a diagnosis of endometriosis. I was certain that my life was about to change for the better. However, despite my doctor’s insistence that he removed all of the endo, my symptoms persisted and even worsened.

There were many days when I couldn’t get out of bed. Days when I remained stuck in a fetal position from morning until night, despite desperate attempts to move. My lack of energy distanced me from even my closest friends. My relationship with my husband became non-existent, as I shied away from even casual contact lest it lead to excruciating sex. I couldn’t take care of my children. Days were spent sitting on the sidelines watching them experience all that was beautiful and ugly in life. Each day that passed made me sink deeper and deeper into depression, enshrouding me with feelings of inadequacy, helplessness, and isolation. My life remained stagnant as I watched my friends, family, and everyone around me grow and change. It became a struggle to merely exist.

Once again I found myself searching for a doctor who would take me seriously and believe that I was truly suffering. I was so desperate to be healthy, so determined to give my children their mother back, that I blindly trusted every misinformed doctor claiming to know how to help. I violated my body with poison-filled syringes carefully disguised as medicine, partook in ineffective drug treatments with horrendous side effects, and underwent three ineffective surgeries with doctors who I now know were not trained to appropriately remove endo. I listened as well-meaning physicians erroneously informed me that becoming pregnant or going through menopause would ‘cure’ me.

By 2013, at the age of 28, I had given up hope. The endo seemed to swallow all of my light and I had become a shell of the person I used to be. It was in that exhausted and vulnerable state that I found a doctor who recommended having a hysterectomy. “It would stop the pain,” she told me, “you wouldn’t have to suffer anymore.” Despite the fact that I was in the hospital under the influence of heavy narcotics, I was somehow deemed competent enough to make a decision that would drastically impact the rest of my life. Oblivious to my husband’s plea that I think about it for longer, I chose to have the hysterectomy the next day. I told myself that I was sacrificing the possibility of having any future children for the sake of the ability to be a mother to my current children. I couldn’t wait any longer.

The hysterectomy provided no relief.  I had lost vital pieces of my womanhood thanks to a doctor who had promised me the world, only to deliver it crashing down. I was devastated.

It was at that point that I grew tired of being a victim. Tired of having things happen to me instead of because of me. No more would I blindly trust the words of those claiming to know better. I was ready to fight for myself; to do my own research and advocate for what I felt I needed.

I joined a few support groups and met many ‘endo-sisters’ who remained strong, determined, and optimistic despite their illness. They were fierce, loving women, whose honesty was at times, frightening for the world around them. They never sugar-coated the truth, never tried to hide the painful emotions and debilitating symptoms they experienced. They welcomed me with open arms, supported me when I wanted to give up and helped me realize that I was stronger than I had ever allowed myself to believe. These exceptional women inspired me to search relentlessly for a doctor who could relieve my symptoms. My research led me to a facebook group that had a list of surgeons who were endo-specialists and used the gold-standard surgical approach to remove endo. Through the kindness of those in my community, I was able to raise 27,000 dollars and fly to Atlanta for the procedure.

Moments before the surgery, the surgeon knelt down next to my bed and asked for permission to pray with me that G-d would guide his eyes to recognize the endo and his hands to remove it. As he held my hand and prayed, I knew that he would be the messenger from G-d sent to heal me. I was right.

Six weeks after the surgery, my pain subsided, exactly as the surgeon told me it would. For the first time in over a decade, I didn’t feel controlled by my pain. It was a new experience, one that was simultaneously liberating and surprisingly scary. For as long as I could remember, my endo had been my identity, my pain my best friend. I didn’t know who I was anymore. Recovery was a long process, as I had to heal both physically and emotionally. I had so much anger at the way I had been treated, dismissed, and misled by the medical system. The guilt that I felt for neglecting my family for so long was, at times, paralyzing.  And oh, the regret! I didn’t think I could ever forgive myself for making the drastic decision to undergo a hysterectomy that was not even successful.

It’s been four years since that surgery and I have a life again. It’s not the same life that I had before I got sick, as I am not the same person. All life experiences change us, whether they are wonderful or devastating. Though the work that I put into healing my body, mind, and spirit never ends, I feel content, and proud of where I am right now.

To girls and women with endo: Please don’t give up hope, you are not alone.

To all women, with or without endo: Trust your instincts. You are stronger and more powerful than you could ever imagine.

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Rachel Cohen is a firm believer that sharing her life experiences and struggles will help others change their lives. Special ed teacher by day and writer by night, Rachel is dedicated to making other women feel less alone through her poetry, blogs, and magazine articles. Rachel is also a proud advocate for women with endometriosis by arming them with the accurate information necessary to take control of their own disease and get the proper medical care they deserve.  She lives with her husband and two children in New York. Rachel can be reached at ownyourendo@gmail.com.   

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