My journey with endometriosis began at the age of 13 when I first experienced the symptoms. Painful periods, irregular flows, and debilitating discomfort became constants in my life. I recall struggling through a high school chemistry exam, barely able to sit upright due to the intense pain. Another memory I have is having to leave a baseball game to urgently purchase ibuprofen at a nearby CVS, unable to endure the agony until I reached home. Each visit to my pediatrician resulted in the same reassurance: that such pain was a normal aspect of menstruation, and prescribing birth control seemed to offer temporary relief.
However, by the age of 20, my condition escalated, and the daily torment became unbearable. Despite expressing my escalating pain levels to my healthcare providers, I was repeatedly assured that such suffering was typical. After persistent complaints, a nurse practitioner finally suggested the possibility of endometriosis. With hope for relief, I explored various treatment options, from medications to birth control methods, including an IUD and doubling up on birth control pills, all in vain. The culmination of my despair led me to advocate for surgery. When I finally was able to see a surgeon at age 23, the first thing that came out of my mouth when I met her was "I want the surgery, I have tried every other option, and I am ready for surgery.” I finally received confirmed of my diagnosis of endometriosis through laparoscopic excision and I can’t underestimate the relief I felt at having 10 years of suffering validated with a diagnosis.
Post-surgery, my recovery was relatively smooth, but the agony persisted, unchanged. Some days I was bedridden, unable to walk without pain. Repeated visits to my surgeon yielded assurances that my pain was normal, dismissing my concerns with the expectation that time would alleviate it. Feeling abandoned by the medical system and discouraged that the “gold standard” of medical care regarding endometriosis was unsuccessful for me, I faced a pivotal decision regarding attending Lollapalooza, roughly five months after my surgery. I was warned against attending a festival that could impact my recovery, but I struggled against foregoing yet another event that anyone else my age could navigate easily.
Despite my surgeon's warning, I chose to go, only to find neither improvement nor deterioration in my condition. It wasn't until persistent complaints led to a referral to a pelvic floor physical therapist that I began to understand the intricate relationship between pelvic muscles, endometriosis, and chronic pain and realized that my pain post- surgery was mainly due to pelvic floor dysfunction, which essentially means that my pelvic floor was stuck in spasms.
Months of dedicated physical therapy twice a week provided a semblance of relief, allowing me to regain some semblance of normalcy. However, relocating to Colorado reignited my suffering as I struggled to find competent medical care. At one point, a pelvic floor physical therapist told me there was nothing wrong with my pelvic floor despite experiencing a flare-up that very day. I never returned and instead tried to manage my pain alone for months.
After a futile search for effective treatment on my own, a referral to an endometriosis specialist in Colorado uncovered another underlying condition—pelvic congestion syndrome—leading to yet another surgery.
Presently, three years post-surgery, my battle with chronic pain persists despite exhaustive efforts. I have been in some level of pain daily for almost six years now. Dietary modifications, trigger point injections, and lifestyle adjustments have become daily rituals in my pursuit of a semblance of normalcy. I have spent two and a half years in pelvic floor physical therapy, I eliminated soy, dairy, and gluten from my diet, and the decision to consume even one alcoholic beverage includes the almost certainty of ending up on the floor of my bedroom in excruciating pain for hours on end. I have received trigger point injections in my abdomen to forcibly relax the muscles biweekly for almost a year and have seen a functional medicine doctor to help me make lifestyle changes to ease my pain.
I am currently addressing the mental aspects of pain to help relax my body, which remains entangled in the pain cycle. Despite trying a myriad of solutions and investing significant financial resources, I still endure daily pain and discomfort, striving for a semblance of normalcy.
Yet, the threat of pain looms over every aspect of my life, shattering trust in my body and complicating my relationships. I have almost completely abandoned high-impact physical activities, and even low-impact activities like walking and yoga can cause a flare-up of pain. I am forced to be vigilant about monitoring how my body is feeling and reacting to everything I do, trying to determine if the twinges I feel will escalate and whether I have an escape route if I need one. Most of my peers have never experienced this type of chronic pain, making it difficult for me to relate to them and communicate my own struggles. This applies to both friends and romantic partners. This is a problem I continue to navigate without a clear path.
Another facet of my struggle is the inadequacy of healthcare resources and the disillusionment with promises of a pain-free existence. Each of my medical encounters has brought false hope and reinforces the chasm between expectation and reality. I yearn for earlier advise acknowledging endometriosis as an incurable, lifelong condition and promoting realistic management strategies. Looking back, I can see now that I received many pieces of medical advice that were incorrect, like hearing that pregnancy or a hysterectomy would alleviate my symptoms. I know now that that is incorrect but my heart hurts for my younger self and other young girls who must go through this bewildering situation with the possibility of such hard decisions weighing on them. I wish desperately for more research and better prepared medical providers to help everyone who comes after me.
My journey with endometriosis has reshaped my existence, eclipsing everyday activities with the shadow of pain. It has tested my resilience, strained relationships, and challenged my faith in medical expertise. Yet, amidst all that, I persevere, seeking solace in shared experiences and advocating for greater awareness and understanding of this debilitating condition.