Let’s delve into the realm of menstrual health, focusing on a condition that often lurks in the shadows: endometriosis. Over the past three years, I’ve embarked on a journey fraught with pain, fear, and financial strain due to my menstrual health. It’s been a tumultuous path, but one that has instilled in me a firm resolve to advocate for change once I emerged from the depths of my suffering. Along the way, I encountered extremely painful procedures and disregard from medical professionals that left me reeling. Through these trials, I gained insight into the complexities of women’s reproductive health, particularly regarding the misunderstood and often overlooked condition of endometriosis.
You may have encountered the term “endometriosis” in passing conversations among women, or perhaps you know someone personally grappling with this diagnosis. But do you truly grasp the significance of this disease? Endometriosis is often dubbed “the silent disease” because sufferers endure years—even decades—of symptoms without receiving validation, as the condition often eludes conventional diagnostic methods and can only be definitively diagnosed through laparoscopic surgery.
Consider this: globally, 200 million individuals, predominantly girls and women, battle endometriosis, equating to roughly one in ten females. Shockingly, three out of four women are initially misdiagnosed, with an average diagnosis delay spanning a staggering decade. This prompts a critical question: Why are women routinely dismissed or accused of exaggerating their symptoms when seeking medical help? Shouldn’t healthcare providers specializing in women’s health possess an acute understanding of the intricacies of the female reproductive system?
The spectrum of symptoms associated with endometriosis is vast, encompassing chronic pelvic pain, lower back pain, pain during and after intercourse, urinary issues, gastrointestinal disturbances, menstrual irregularities, infertility, and a diminished quality of life marked by anxiety and depression.
The socioeconomic impact of endometriosis is profound, imposing a burden of $119 billion annually in lost wages, productivity, and medical expenses. On average, women with endometriosis lose 11 hours of productivity each week, a stark reality impeding their ability to thrive.
Imagine enduring daily, debilitating pain, only to be told it’s “All in your head.” Unfortunately, this dismissive response is all too common within healthcare circles. I traversed the realms of obstetrics, gynecology, and primary care for months before finally encountering a specialist who listened to my story and took me seriously. I am here to remind you that you do not have to live I pain, and no it is not all in your head.
My own journey spanned three arduous years of medical tests, countless consultations, painful procedures, and a botched fibroid removal that left me in agonizing discomfort, without a definitive diagnosis. Sadly, my narrative is far from unique, mirroring the experiences of countless women and girls worldwide.
Amidst relentless pelvic pain flare-ups, I remained steadfast in advocating for myself, refusing to accept “we don’t know what’s causing your pain” as a satisfactory answer. I learned to trust my intuition, which unequivocally pointed to the traumatic repercussions of consecutive hysteroscopies as the source of my pelvic floor dysfunction.
While I’m merely scratching the surface of my journey, my commitment remains unwavering: to share my story as a catalyst for change. I assembled a dedicated team of specialists versed in addressing complex issues like mine, comprising a gynecologist/functional medicine practitioner, a pelvic floor therapist, and a clinic specializing in chronic pelvic pain.
Collaborating with this team of experts I finally received a diagnosis of pelvic floor dysfunction stemming from prior procedures, alongside a probable endometriosis diagnosis based on symptomatology and the coexistence of uterine fibroids.
Pelvic Pain Rehabilitation Medicine offered a tailored protocol targeting endometriosis and chronic pelvic pain, incorporating six weeks of external trigger point injections guided by ultrasound, accompanied by a pudendal nerve block and prescription medications. This regimen aimed to alleviate nerve tension and reduce neurogenic inflammation perpetuating the pain cycle, supplemented by prescription medications targeting pain signal disruption and muscle spasms.
Injections in and around your pelvic region sound scary and people typically wince when I explain the process, but let me tell you this: the pelvic pain flare ups that I was stuck in were so excruciating and there was no true relief for so long, no pill to take away the pain, no magic potion, no surgery. So, when you tell me a few injections and pharmaceuticals may be successful at releasing me from the clutches of this pain I couldn’t wait to begin the treatment.
Today, I’m elated to report over a year of freedom from pelvic pain. Armed with newfound knowledge, resources, and a supportive medical team, I find peace in knowing I’m equipped to navigate any future flare-ups. While my endometriosis status remains uncertain, my journey underscores the pressing need for improved diagnostic modalities and equitable access to care.
Grateful for my pain-free existence, I’m acutely aware of the millions of women denied such respite due to inadequate healthcare access. Thus, I’m steadfast in my resolve to break the silence surrounding pelvic pain and advocate for systemic change. No one should endure needless suffering, nor should access to quality care be contingent upon financial means.
In upholding my pledge to support fellow sufferers of pelvic floor dysfunction, I refuse to remain silent. Let us shatter the stigma surrounding menstrual health issues and demand comprehensive diagnostic protocols, accessible treatment options, and increased research funding.
If you suspect you’re grappling with endometriosis or fibroids, empower yourself with knowledge, articulate your symptoms effectively, and advocate for your right to comprehensive care. Remember, you’re not alone; seek solace in community support and encourage loved ones to educate themselves about women’s reproductive health issues.
It’s time to end the silence and start the conversation. Together, we possess the power to effect meaningful change, ensuring a brighter, healthier future for generations to come.