Painful Goodbyes and Impossible Decisions: Endometriosis Part III

My sweet friend Julie holding my niece.

My sweet friend Julie holding my niece.

I was eighteen years old the first time a Dr suggested I have a hysterectomy… EIGHTEEN!!!!! Of course I flatly refused. There was no way I was giving up that early in the game. Despite the repeated efforts of Dr’s who told me that my quality of life would continue to diminish, I doggedly held to the hope that some day I would conquer this foe. Consequently the drug treatments and laparoscopic procedures became more intense in an effort to stave off the damage from the endometriosis. During one of the final laparoscopic surgeries they actually severed nerves in my lower back in a last-ditch effort to alleviate some of my intense pain. Despite the rigorous drug therapies the menstrual pain was coming everyday and would last all day. I was hurting 24/7 and nothing seemed to provide relief. Daily activities became difficult and most nights sleep was impossible. Between endo and the “treatment” for endo life was proving difficult on the best of days.

I hung on for several more years. What I really wanted was the opportunity to see if I could start a family. It was frustrating to say the least, with everything I had going on the dating scene was not a friendly place for me. I actually had one guy tell me that the reason he was breaking up was because he wasn’t ok with the possibility that I couldn’t have children. He wanted to have his own children and the idea that we might have to adopt was a “deal breaker.” At first I was fueled by righteous indignation toward him, however, as time passed I had to admit that he was entitled to his own dreams which I knew I needed to respect.  After all, wasn’t that what I truly wanted in the end as well? This experience left me reticent to share my plight with guys I dated. It always became a huge inner debate of how much to share and how soon. It was emotionally exhausting. While I dated during these years, nothing ever felt permanently right and yet there was this underlying thought that I was running out of time. I felt pressured to find someone so that I could make some decisions in regards to my health. I believed that because these decisions would have a direct effect on my future family, it was only natural that I should move forward with my spouse at my side. I was stuck and stagnating. My health continued to deteriorate while I stubbornly held to the myth that I just couldn’t move forward without a spouse.

In 2000 the debilitating nature of the disease rose to new heights. The laparoscopic surgeries no longer provided any relief, the damage was too widespread. I remember one surgery where they had to do such extensive “cleaning” with the laser that it left me raw on the inside. For a few weeks afterward I could actually feel my organs moving against my abdominal wall every time I shifted position. It was during this timeframe that the suspected tumor on my pituitary also started to play a more active role. It was believed that I finally just stopped ovulating. My periods, once overly heavy, were now light and almost nonexistent except that the pain was increasing ten fold. The Dr suspected that my uterine lining was still swelling with every cycle but was never being sloughed off as it should have been during a period. They did a D&C to see what was going on. He suspected that uterine cancer might be involved. I won’t lie, sitting there as a 23-year-old and hearing your Dr say cancer is nothing short of terrifying! Luckily the D&C, while extremely painful, proved that cancer was not yet on the table. My relief was short-lived, however, because in the next breath he told me that unfortunately he couldn’t rule cancer out of the equation forever and that we would need to watch closely. He also lowered the final boom when he said, “You are not ovulating anymore; it is time to reconsider the hysterectomy option.”

I left his office in a daze, hurting and emotionally bereft. I spent the next year researching all of my options. I came across a Dr who claimed he could cure endometriosis and in a last-ditch effort I scraped together funds to visit him. I won’t go into too much detail, but after all of that effort he proved to be a complete quack! It was devastating to get my hopes up only to have the realization dawn that I had exhausted all of my options. I was feeling bitter and angry that I had to come to this decision on my own. I desperately wanted a mate to lean on and help me through this process. My loving and loyal friend Julie was there through it all. Her heart broke with mine and we mourned together every step of the way.

In November of 2000 the final decision was made, I would have a hysterectomy. Typing it out just now makes it seem so trivial. It was anything but… It was a harrowing, soul searchingly, grueling experience. As I sit here putting it in writing for the first time in my life I feel the weight of it all over again. As you can imagine, I don’t like to revisit those days. Most often I would experience sleepless, tear filled nights followed by days full of numbness and denial. I clung to my faith by my fingernails. I was holding out for a miracle. I was sure that if I asked, God would heal me and all would be well. I clearly remember my prayers as I begged for this miracle. During one such moment of supplication I had an experience I will never forget. It was very sacred to me and so I will keep most of the details to myself. In short, I received an answer that I didn’t expect. I clearly felt a whisper in my soul that said, “I know you have the faith to be healed, but do you have the faith to endure this trial?” As that answer sunk in, I knew that I was destined for a great soul expanding lesson through this trial. I had never thought that it would require faith to endure the trial but it did and it still does to this day. This has tested my faith in a way that is unique from any other faith building experience I have ever had. It meant that I had to trust in God and in his timing and wisdom. It is easier said than done, but I have learned that he is in charge and if I trust in him there is nothing to fear. I always say that I cling to the fact that where God is concerned, all is as it should be, even if we don’t quite understand it at the time. Some of those lessons I feel I’ve learned in hind sight and I will readily admit that I am still learning and growing through continued trials today. I hate to admit it, but through some of the most painful experiences comes the opportunity to grow in ways that otherwise would have been impossible. Heavenly Father knows this and while he doesn’t want us to suffer, he understands that trials must happen so that we can learn and grow.

They say when it rains it pours, the down pour was impressive. While attempting to plan all of this my room-mate decided to move back to our home state, my boss quit his job leaving me to acclimate to a new boss, no easy thing when you are an executive secretary. Add to this the irony that my little sister had her first baby during this year and I was out of my mind with worry and grief. I was so happy for my sister and excited to be an aunt, but with that came the stark contrast in our situations and I couldn’t help but be a little jealous. Amidst all of these stresses I was preparing for my hysterectomy. The Dr and I decided that I would need to have a full abdominal procedure because they would also be cleaning out any residual endometriosis they found and removing both of my ovaries. That tiny little pituitary tumor was adversely affecting my ovaries and keeping them would only encourage the endometriosis to continue even after my hysterectomy. So it was absolute. This was it; all hopes of ever being pregnant were gone along with any idea that I could preserve my ovaries for surrogate possibilities down the road. I felt utterly and completely betrayed by my own body. Something that I feel every day as other conditions continue to plague me. I say this all of the time but it cannot be said enough in my case, my body and I DO NOT get along! After weeks of appointments, countless discussions, and many more sleepless, grief filled nights the date was set. December 7, 2000. Pearl Harbor day. My sister’s birthday. So many ways to mark this day in my mind forever. Once this date was set it seemed there was no turning back. In fact, in true cold-hearted form, my health insurance company informed me that at the end of that year they were dropping my Dr from the network. This meant that if I wanted the surgery paid for it was now or never.

Did I mention that when it rains it pours? Well here is the hardest part of this story for me to write. I rarely discuss these events, they are too painful. My faith was already being stretched so thin I hardly recognized it anymore. About a week and half before December 7th my Dad called me one evening after work. I could tell right away that something was terribly wrong. In halting sentences and tears in his voice he told me that Julie’s husband had come home from taking their boys to school to find that she had stopped breathing and was unresponsive. An ambulance was called while he worked on her and later the paramedics would get her breathing again on the way to the hospital but she never regained consciousness. She was in the ICU on life support. I fell to the floor and cradled the phone to my ear while I cried. The only sounds for several minutes were the mutual sobs of my father and I over the line. “What should I do?” I asked. Dad told me to wait out the night and we would decide in the morning. I drug myself to work the next day with my head spinning. The first order of business after I found that Julie’s condition had not changed overnight was to call the Dr and the insurance company to plead my case. The Dr was willing to be flexible but I received no mercy from the insurance company. Basically rescheduling my surgery was out of the question. To his credit, my new boss was more than understanding. Realizing that I would also be out of the office for two months after my surgery he encouraged me to fly to my home state to be with my family.

I bought a plane ticket and like an automaton packed and flew home. I was consumed by the loneliness I felt. Not only was I having a hysterectomy as a single woman, not only did I feel there was hardly a soul on earth who could relate, now the ONLY person with whom I felt I could truly share my grief was leaving this life forever. I had never felt so completely and utterly alone in my entire life. I can’t describe the pain, it was… Even as I type this I can feel the inner desolation returning. After the plane landed we went straight to the hospital. I distinctly remember every detail, what I was wearing, how my hair looked, the colors of the hospital walls. Everything is seared into my brain in startlingly colorful features. I approached her hospital bed feeling the hole in my chest burst wide open and like a wound that has been reopened one too many times I felt eviscerated. At that moment my mind couldn’t handle the emotional distress any longer and I felt a switch flip. All I can recall is thinking, “this is just too much for one person…” so I turned it all off. I clamped it all down tight. Sure, I shed a few tears, well more than a few tears, but through it all I kept a lid secured tightly over the deepest and darkest of the emotions that were threatening to surface. I was sure that if I gave in to the intense grief and anguish I would never recover…never.

I spent the next week in a haze. Julie never regained consciousness. One of the last memories I have of her was helping the nurses clean and prep her so that her two young boys could come say their “goodbyes”. It was heart wrenching to see her eight and five-year old come to grips with the fact that momma wasn’t going to get better. I was at her home during the week with her youngest curled in my lap. He looked up at me and said, “Stina, you are going to have to move home and be our mom now.” With tears streaming down my face I said, “no one will ever replace your momma, she will always be in your heart, but I will always be your ‘sister with the yellow hair’.” A few days later they made the decision to remove all life support. She hung on until the morning of December 6th. I had flown home the evening of the 5th in order to prepare for my surgery. The last time I saw her was lying in an ICU hospital bed struggling for her final breaths.

To be continued…

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7 thoughts on “Painful Goodbyes and Impossible Decisions: Endometriosis Part III

  1. Betrayed by your own body… that phrase has sunk into my thoughts. My dad told me when my brother died “we have emotions because words are most often not enough to describe how we feel”. I can completely understand the reasoning behind you locking such emotion away. I love you Christina. Always have! I put your name in the temple yesterday. Love your friend, shantell

  2. “I know you have the faith to be healed, but do you have the faith to endure this trial?” This is a profound statement. You have me tearing up. How brave you are. I wish I could hug you. You’re such an encouragement to me in this situation. I really appreciate you sharing your story. Thank you again.

    • Thank you so very much! I am so glad that my experiences are something that you can relate to! I read your post about moving and change today and I loved it! I say go for it, there is nothing worse than living in the land of “what might have beens.” And… I take your “internet hug” and return it right back at ya! 😉

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