When 'Wait and See' Isn't Enough: My Journey of Medical Advocacy
When 'Wait and See' Isn't Enough: My Journey of Medical Advocacy
I wrote this about 12 years ago but it still rings true.
For a month now, a deep, persistent fire has been burning in my gut. It's more than just an uneasy feeling; it's a profound, urgent need to share my story, particularly as a cautionary tale for other women. Yet, this internal wrestling match with my own complex emotions—fear, relief, anxiety—has held the words captive. I’m finally ready to speak.
Here is the crux of my message, something we’ve all heard countless times, but whose weight I now understand: Listen to your body. In a world where doctors are busy and systems are overwhelmed, you are the final authority on what is happening within you. A doctor might dismiss your concerns or tell you to wait and see, but you know when something is fundamentally wrong. It is, after all, your body, and you are its only constant advocate.-----My journey into hyper-vigilance started after my son's birth. I expected the postpartum bleeding—it's a natural, inevitable part of recovery. It initially stopped, which I took as a sign of normal healing. However, a short time later, the bleeding started again. This second bout was confusing. Was this a resurgence of normal postpartum lochia, or was it something else entirely? I decided that when it came to my health, I would always err on the side of caution.
My primary care doctor was the first person to truly listen. I explained that the bleeding had stopped once and that the renewed flow didn't feel like a typical menstrual period. Crucially, I noted that the bleeding only seemed to occur during bowel movements. Recognizing that this pattern wasn't typical for postpartum recovery, my doctor immediately shifted focus and referred me to a gastroenterologist for a specialized evaluation.
The gastroenterologist recommended a colonoscopy. The procedure, though daunting, proved to be an invaluable diagnostic tool. It revealed a number of polyps in my colon. They were removed and sent for testing, and the results were sobering: some of the polyps showed precancerous signs. This meant they harbored the potential to develop into full-blown cancer over time. The diagnosis necessitated a commitment to regular, vigilant colonoscopies to monitor my health and catch any future growths early.
This initial health scare hammered home the valuable lesson I now preach: trust your intuition. If a feeling persists that something is "off," do not hesitate to speak to your doctor. And here is the essential second part: if your doctor minimizes your concerns or fails to investigate them seriously, you have the right and the responsibility to find a new doctor—one who will be your partner and advocate in your health journey.-----A few years later, my body sent a new signal. I noticed my menstrual periods had become significantly heavier than usual. Concerned, I made an appointment with my gynecologist. I laid out my medical history, and my doctor explained that while having had three C-sections can sometimes lead to a thickening of the uterine lining, this wasn't necessarily the direct cause of the unusually heavy bleeding.
To investigate further and rule out any abnormalities, my gynecologist recommended an endometrial biopsy. This procedure, while not as comfortable as a Pap smear (which can involve some stinging), was manageable. It involves taking a small tissue sample from the lining of the uterus to be analyzed for any cellular changes or growths. Fortunately, the results came back normal, which was an immense relief, allowing us to focus on monitoring the situation.
Adding a layer of complexity to my case was my family history. My mother tragically passed away from ovarian cancer when I was just 11 years old. Given this profound and devastating history, I underwent genetic testing to see if I carried the gene mutation associated with the disease. Thankfully, those initial test results were negative, indicating I did not carry the mutation.
However, after a few years and a move to a new area, I needed to establish care with a new gynecologist. When I explained my medical narrative—the history of heavier periods, my age and the approach of menopause, and my strong family history—she introduced the idea of an oophorectomy (surgical removal of the ovaries). She candidly discussed the generally positive benefits of the procedure for high-risk patients. Crucially, she acknowledged that negative genetic tests, while reassuring, are not foolproof. A positive test confirms the presence of the gene, but a negative result does not always guarantee its absence, especially when combined with a strong family history and other physical symptoms.
My new gynecologist ordered repeat genetic testing. The results were again negative for the specific gene mutation, but this time, the report included a higher risk score. This score indicated that my overall risk of developing ovarian or related cancers was slightly elevated compared to the average population. This score, while not confirming a genetic mutation, served a critical purpose: it allowed my doctor to professionally justify the prophylactic oophorectomy to my insurance company, thereby securing coverage for the ovary removal. While the necessity of having to justify a proactive, life-saving medical procedure to a detached insurance entity is a source of frustration, that is a broader systemic discussion for another time.-----My journey has recently taken its most serious turn. During a routine ultrasound, a mass was discovered in my uterus. I have an upcoming surgery scheduled for June to address this. The doctors are transparent: they won't know the exact nature of the mass—whether it's benign, a fibroid, or something more serious—until it is surgically removed and analyzed.
Initially, my doctor recommended a targeted approach: removing both my ovaries (the oophorectomy) and the mass itself. We also had a crucial discussion about a more comprehensive procedure: a full hysterectomy, which involves the removal of the uterus, cervix, and fallopian tubes, in addition to the ovaries. This option would offer the ultimate peace of mind, eliminating any future concerns about the current uterine mass or the potential for other growths. After careful, deliberate consideration of my history, my risk profile, and the desire for finality, I decided to proceed with the full hysterectomy.
This decision is deeply personal and fraught with emotion. I don't speak with anyone who knew my mother well, for reasons that are theirs, not mine. I was too young to truly understand what she went through, both the visible signs of her illness and the unseen emotional turmoil. I don't know what she truly felt or if she, too, had ignored an internal warning. I know, with absolute certainty, that I am making the right, proactive decision for my health and future. Yet, the finality of the surgery still fills me with a profound sense of fear. The recovery is expected to be lengthy, approximately two months. As a teacher, I deliberately scheduled the surgery for the summer break, a practical necessity, but the reality of the impending ordeal remains unsettling.
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