We need hope, or else we cannot endure. — Sarah J. Maas
After a long wait, I finally had my appointment with the endometriosis specialist, 2 weeks ago. The experience left me with mixed feelings, from validation and relief to sadness and frustration. It was all too much and it just came pouring out as a few tears running down my cheek and misshaped smile.
Discovering that my worsening pain wasn't all in my head brought me immense joy and validation. For weeks, I had second-guessed myself, wondering if the pain was just a figment of my imagination. But now, as the specialist confirmed that endometriosis had grown around my nerves, explaining the excruciating pain and tingling sensations that ran from the bottom of my spine and down my leg, I felt a wave of relief wash over me. Once again, there was concrete evidence that my pain was real and not imagined.
However, alongside this validation came the weight of another required surgery. The specialist explained that laparoscopic excision surgery is necessary to remove the endometriosis from the various locations where it has been identified. The thought of going through surgery once again and taking time off work to recover felt overwhelming. It seemed like a never-ending cycle of pain, surgery, and healing, a routine that had become all too familiar.
Endometriosis doesn't just affect me—it takes a toll on my Sunshine and family too, not forgetting my overly sensitive fur-baby and my close friends. Witnessing their worry, frustration, and helplessness in the face of my chronic illness breaks my heart. The constant cancellations of plans, the days spent in bed unable to participate fully in life's activities, the constant doctor's visits and time off work—it all adds up, not only emotionally but also financially.
The financial strain of managing endometriosis is an additional burden to bear. Despite having medical aid, there are still numerous out-of-pocket expenses that we need to cover. Medications, specialist consultations, tests, and now another surgery—it all adds up, creating a sense of frustration and anxiety about the financial future. You'd think that the current inflation rate is not adding enough financial woes in our minds, lives and pockets.
As if the news of endometriosis wasn't enough, the ultrasound revealed more than expected. The specialist confirmed my suspicions of adenomyosis, another condition that often appears hand-in-hand with endometriosis. Here's a learning moment for some: adenomyosis occurs when the tissue that normally lines the uterus (endometrial tissue) grows into the muscular wall of the uterus. The coexistence of these two conditions adds another layer of complexity to my health journey.
Moreover, the presence of adhesions, the scar tissue caused by endometriosis, has resulted in some of my organs playing 'happy family' and sticking together. It's a painful reminder of how this disease has infiltrated and disrupted the normal functioning of my body. The adhesions plus endo around my nerves have exacerbated the pain, making even simple tasks like walking and driving challenging without the assistance of medication. To prioritise mine and the safety of others on the road, I've made the decision to stay away from driving during this time, as operating a vehicle while on heavy medication would be plain stupid and irresponsible.
With the confirmed diagnoses and the worsening symptoms, surgery has become an unavoidable step on my path to healing. Next week, I will undergo laparoscopic excision surgery, guided by the expertise of my surgical team. The primary goal of the surgery is to excise the endometriosis from the various locations where it has taken hold, including around the nerves, and to remove the adenomyosis. Additionally, the surgical team will work to separate my organs, freeing them from the clutches of adhesions and restoring their independence. Whoop, whoop!!
During the surgery, the team will carefully examine various organs for the presence of endometriosis, as this sneaky disease can hide in unexpected places throughout the body, earning its reputation as a whole body disease. Wherever endometriosis is found, it will be meticulously excised, ensuring the best possible outcome for my long-term health. One of the scariest things is the endo up my precious booty hole - the rectum 😯😯. Depending on the exact location, the removal of the endo may require extra care from the surgeons or else it could be the difference between me needing a stoma for some time, or not. And Lord knows...oh the good Lord knows that that's a cross that I cannot bear.
Another learning moment: a stoma is a surgically made hole in the abdomen that allows body waste to be removed from the body directly through the end of the bowel into a collection bag.
I place my trust in my surgical crew, knowing they will do their utmost to alleviate my suffering. I also hold onto faith, believing that God will guide their hands and grant me the strength to endure this challenging journey. The stakes are high—I need this surgery to go well not only for my sanity but also for the sake of my loved ones who have stood by me through it all.
At this moment, my focus is not on fertility concerns or the potential impact on my ability to conceive. Right now, my paramount desire is to regain a sense of normalcy and function as a regular human being. I yearn to reclaim my life from the clutches of this debilitating illness, just like anyone fighting any kind of ailment. The mere thought of being free from the constant pain and limitations fills me with a profound sense of hope and determination.
Despite my aversion to undergoing yet another surgery, I eagerly anticipate the day when I will be lying on the operating table, my vulnerable and innocent body ready to be freed from the grasp of this deep, infiltrating endometriosis. It's an odd mix of emotions—an eagerness for the procedure to begin, coupled with bits of anxiety about the road to recovery that lies ahead.
Initially, I was given a surgery date set for 25 July, a date that seemed impossibly far away. However, I am grateful beyond words that my doctor managed to secure an earlier date for me. Time is of the essence, and the sooner I can undergo the surgery, the sooner I can start the healing process.
As I look ahead, there is one concern that lingers—the financial aspect of the surgery. While I try not to dwell on it too much, the reality of the out-of-pocket expenses weighs heavily on my mind because my medical aid won't cover all of the expenses. Yet, for now, I set that fight aside for another day, saving my energy for the battle I am about to face within my own body.
In the coming days, I will prepare myself mentally and physically for the surgery. I pray fervently that God will safeguard me, allowing me to "go gently into that good-anaesthetic-night" sleep, and awaken on the other side, ready to embark on the challenging but hopeful journey of recovery. Remember, there's currently no cure for endometriosis. The surgery is merely to treat my symptoms and to help alleviate my pain so that I can have a good quality of life...for as long as this disease allows.
To all the fellow endometriosis warriors and those battling any illness: may we all find healing and reclaim our lives, one treatment method and one day at a time.
Signed
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