Scars are not injuries. A scar is a healing. After injury, a scar is what makes you whole. - China Miéville
On 14 October 2018, my life changed forever as I underwent my first-ever laparoscopic surgery. Prior to that day, I had endured excruciating pain that led to a frantic rush to the emergency room by my wonderful Sunshine. Little did I know that this would be the beginning of a series of laparoscopic procedures, ultimately leading to my diagnosis of endometriosis. In this blog post, I want to share my journey, the importance of excision surgery, the challenges of finding skilled specialists, and the need for continued awareness and research to find a cure for this debilitating illness.
From that initial surgery in 2018 to my most recent operation just a few weeks ago on 20 October, I have lost count of the number of laparoscopic procedures I have undergone. It wasn't until my laparoscopy performed by my third surgeon and gynaecologist (my current gynaecologist) in July 2020, that I received a definitive diagnosis of endometriosis. The diagnosis was a turning point, providing clarity and paving the way for appropriate treatment.
During my early surgeries, ablation techniques were utilised, which focus on removing superficial endometrial lesions. However, I later learned that excision surgery is considered the gold standard for endometriosis treatment. Excision involves surgically removing deep infiltrating endometrial tissue, which can significantly alleviate symptoms and improve long-term outcomes. It is crucial for individuals with endometriosis to advocate for excision surgery and seek out skilled surgeons experienced in this technique.
One of the most significant challenges in managing endometriosis is finding skilled specialists who offer the most up-to-date treatment options, including excision surgery. This scarcity is not limited to South Africa but extends globally. However, resources such as the private Facebook group, Nancy's Nook Endometriosis Education, provide a valuable platform for sharing recommendations and generating lists of international excision surgeons. While it's essential to conduct personal research on recommended doctors, these resources can be a starting point for individuals seeking expert care.
The toll that multiple surgeries and the subsequent recovery time take on one's work and academic commitments cannot be understated. Unfortunately, this reality often clashes with the limited paid sick leave allowance, creating an additional challenge for individuals battling endometriosis. The consequences extend beyond physical discomfort; they also deeply affect one's mental well-being. That's why I also attend therapy sessions at least once a month, just to help me navigate this illness and my life.
The guilt associated with taking time off work and school due to endometriosis is a heavy burden to carry. Each absence serves as a reminder of the toll the condition takes on our bodies. From enduring relentless pain to relying on medication and undergoing surgeries, our lives revolve around managing the symptoms. If I were to quantify the number of days I've been absent from work due to endometriosis-related issues, including post-surgery recovery, pain-induced rest days, and medical appointments, the tally would be dishearteningly substantial.
It's disheartening to realise that chronic illness can often make employers hesitant to hire individuals like us, as our health demands are frequently misunderstood or seen as a burden. Yet, none of us asked for this. We didn't choose to have endometriosis disrupt our lives in this way. If given the chance, I would never have signed up for a life filled with constant pain and limitations. But this is the hand I've been dealt, and I must summon the strength to face it head-on.
While the challenges and setbacks can feel overwhelming, we must remind ourselves of the resilience and strength we possess (when the fatigue is not overwhelming us). Endometriosis may have disrupted our lives, but it hasn't defined us. We have the power to advocate for ourselves, educate others about our condition, and work towards creating a more inclusive and understanding society. By speaking up and sharing our experiences, we break down the stigma surrounding chronic illness, fostering empathy and support.
Together, we can provide a network of understanding and support. It is essential to surround ourselves with individuals who uplift and empower us, whether it's our family, friends, or colleagues who offer a compassionate ear or a helping hand. Building a community of like-minded individuals who understand the struggles and challenges we face can make a significant difference in our journey with endometriosis.
The relief experienced after each laparoscopic surgery is indescribable, that is, once the body has recovered from the cutting, poking and prodding of the surgical procedure. However, it is crucial to remember that a laparoscopy is not a cure for endometriosis but rather a diagnostic and treatment procedure. It is through raising awareness and advocating for further research that we can strive for a cure for this debilitating illness. Endometriosis affects millions of women worldwide, and our collective efforts can make a significant impact in improving the lives of those living with this condition. Together, let's push for change and support each other in this journey of resilience and strength.
Signed
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