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Julie’s Story (Endometriosis)

JulieWhen do you get “Back to normal?” Maybe the better question is whether or not there even is such a thing as “Normal.”

Society tends to make us believe that we should fit into standards they’ve defined in order to be considered a part of the status quo. But what does that even mean? I think normal is boring–it’s mundane and ordinary. Shouldn’t we each strive to be our own person? That which makes us different makes us uniquely beautiful.

My uniqueness is the sum of life experiences that changed me physically, mentally, and emotionally. I was diagnosed with Stage Four Endometriosis at the age of 19, and it took 7 years to get that diagnosis. Seven years of doctor visits, medications, surgeries, trips to the ER, and even some pretty terrible doctors along the way telling me it was “just bad cramps,” and that was my lot in life for being a girl. (Insert eye roll here.)

After finding a specialist, I finally got the surgical diagnosis. I was happy to know what it was but terrified of the implications down the road. Endometriosis is one of the leading causes of infertility. At 19, I wasn’t ready for marriage, kids, and a white picket fence, but it was something I longed for–someday. Given my diagnosis, I wanted to know whether the odds were stacked against me or not.

For years I dealt with excruciating pain; it was trial and error with medications to treat the symptoms. I endured more surgeries, (almost) monthly trips to the ER– due to collapsing from pain, hemorrhaging, and blood loss. The surgeries were attempts to not only help my quality of life but also get me to a time and place where I was ready to start a family.

Love and marriage eventually came along. When we enlisted the help of fertility specialists, the news was worse than I could have ever imagined. I was told I would never be able to get pregnant, and if I did I would not survive the pregnancy. Harvesting my eggs for a surrogate wouldn’t work either, because the lengths it would take to get me there would put my life in jeopardy. This was not only a crossroads but a catalyst for what unfolded.

I was part of a drug trial where I was receiving an injection every 3 months. It was a cancer treatment drug that had a very interesting side effect: It puts women into medically-induced menopause which in turn gave me a quality of life I didn’t think was possible.

Unfortunately, endometriosis has no cure. Experimental treatments like the one I was on had a lot of unknowns. In my case it worked until it just stopped. It was as if someone turned off a switch. My body had built up an immunity to it. A total abdominal hysterectomy saved my life. While my case was extreme, millions of women around the world suffer from this disease that is so misunderstood and, more often misdiagnosed. It is one of the leading causes of infertility yet there is no cure–treatment options, merely mask the symptoms. FYI, sometimes, a hysterectomy is not a cure. Doctors try to avoid that at all cost, but unfortunately, that was my only chance at survival.

The bright side of my ordeal is that I learned a lot about myself. I also realized who truly loves me. Those who never left my side still stand by me so many years later. I’m not bitter or angry toward those who couldn’t handle it and (quite literally) left me while I was in the hospital recuperating from something that nearly ended my life. I was told I should feel shame, because I no longer fell into what society deems a dutiful wife should be but instead, I had a new outlook on life. It was a long road to recovery and an even longer road to get through a divorce.

I needed the hysterectomy to save my life, but I also flatlined on the operating table. I spent a long time in the hospital after that. When I was coherent enough I thanked my doctor. He told me I did all the hard work because I fought for my life–he believed there was a higher power at play. While they did everything they could medically they did not think I’d make it. My response to him through the mask of pain, a high fever, and a morphine-induced haze was, “My work here isn’t done.”

I may never truly recover from the heartache and longing of never being a mom. I made peace with being left at the hospital, but it still stings to know that I wasn’t enough. My husband’s absence made room for the presence of others who love me for me, and I couldn’t be more thankful. I may not have children of my own, but I have a family that I love with all my heart. They welcomed me into their lives with open arms.

My point in all of this is that things happen. Life happens and it doesn’t always go according to plan, but it goes the way it should. Life goes the way it was meant to because fate/destiny/whatever you want to call it, intervened and course corrected.

You see, many people don’t get serious about self-development and self-awareness until they experience a life-changing event; something that moves them shakes them up and changes their perspective by turning their world upside down. For me, that moment happened the day I had to have the hysterectomy that saved my life. I will never regret that I survived, and I believe what I told my doctor all those years ago, “I am meant to be here. I have work to do.”

My voice needs to be heard. I try to do something every day to raise awareness, whether it’s writing about it, speaking with other women affected by it, or not letting our voices be silenced in shame–we are enough, we deserve a cure. No woman should ever have to endure it, and they certainly shouldn’t have to fight it alone. I am an “Endo-Strong Endo-Warrior” and I cannot and will not be muted.

No matter what your battle is, my advice to all of you is to learn from every experience, challenges, mistakes, and hardship. Without knowing loss, how can you fully appreciate how fortunate you really are? NO ONE is perfect. Be aware that change is a constant in life–except that–if you don’t, you’ll end up spinning in an endless circle of self-doubt and feeling like a failure. Change becomes your greatest teacher as long as you give yourself permission to learn from it. Recognize your strength. This was the hardest one for me to grasp. I always thought of myself as weak due to my illness, but physical strength and mental/emotional strength are polar opposites–learn the difference. Eventually, you reach a level of understanding in life that some might refer to as wisdom–share it. We may all come from the same mold, but it’s adaptable–we grow. we change, and we shape ourselves.

I fight for myself and for all my Endo Sisters. ‘Kick the societal norms to the curb because they don’t apply. Do not let this disease define you. We define ourselves with every experience, heartache, triumph, and loss. Speak up, embrace your differences, and reach out to others that are struggling. The ear you lend today could save a life tomorrow. Get out of the toxic relationship, you will do better, even if you end up alone for a while. Being alone gives you time to heal so your heart can be open and ready when the right one comes along. Learn who you are, who you want to be, and how you want to be loved. A disease and heartache didn’t stop me–I won’t allow it–and I certainly won’t allow anyone else to get in my way.

My life didn’t turn out the way I planned it and looking back, I’m glad it didn’t.

Julie
New Jersey
Submitted February 7, 2019

This story is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

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2 comments

  1. I too suffer from Endo. You had it 100 times worse than me. I spent about 10 years with no diagnosis all the while getting worse. I am so glad you are doing better and sound like you have a great support system. Keep fighting!

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