My Journey with Endometriosis
Pain isn’t supposed to define childhood, but for me, it did. At just 11 years old, my world changed in ways I could never have imagined. The first signs were cramps that felt like they were tearing through my body, sharper and more intense than anything I thought possible. The pain would start in my pelvis and radiate outward, like waves of fire spreading through my abdomen and down my legs. Within minutes, I’d be doubled over, clutching my stomach, unable to move or speak. Often, the pain grew so unbearable that I’d black out, waking up on the cold, hard bathroom floor, drenched in sweat and gasping for air. These episodes left me terrified and confused, wondering what was happening to me and why no one seemed to take it seriously. The sharp, searing cramps weren’t just a monthly occurrence — they became a constant shadow.
I spent numerous nights curled up on bathroom floors, clutching my stomach, tears streaming down my face, trying to make sense of what was happening to me.
By the time I was a teenager, the pain had stolen so much from me. I missed school dances, sleepovers, and days at the beach. While my friends were out creating memories, I was trapped in bed, hoping that this time the heating pad might make a difference. My days were filled with visits to countless doctors who dismissed my pain or labeled me as a pill seeker.
Each appointment left me feeling smaller, more invisible, and no closer to answers.
For years, I was prescribed an endless carousel of birth control pills and medications, each one promising relief that never came. Instead, the pain only worsened, and the hope I once clung to began to fade. After years of misdiagnoses and ineffective treatments, I was finally given a name for my suffering at 19: endometriosis.
While I thought this diagnosis would bring clarity, it only marked the beginning of a lifelong battle — a battle I’m still fighting today.
Years of Missteps and Misdiagnoses
After my diagnosis, I embarked on a journey through a maze of treatments that led nowhere. I underwent multiple laparoscopic ablation surgeries, hoping they would provide relief, but each time, the pain returned—stronger and more persistent. Doctors prescribed numerous medications, each one promising to ease my symptoms, but none delivered. Instead, the side effects piled up, and my hope began to dwindle. Over time, I accepted the idea that this was my life, that the pain would never truly go away.
It wasn’t until I came across the book Beating Endo that I discovered excision surgery — a procedure that promised more lasting results, and yet, in the 20+ years I had been dealing with endometriosis, not one of my doctors had ever mentioned it.
For the first time in years, I felt a spark of hope.
But the road to excision surgery was long and filled with challenges. Before the surgery could be scheduled, my doctors discovered other medical issues caused by endometriosis that needed to be addressed first. What I thought would be a straightforward process turned into a two-year journey of preparation.
The First Excision Surgery: A Glimmer of Hope
When I finally had my first excision surgery, it felt like a turning point. During the procedure, my surgeons confirmed that I also had adenomyosis.
My uterus was severely enlarged, and they removed multiple fibroids, deep infiltrating endometriosis, and my appendix.
The recovery was slow and grueling, but I was hopeful that this was the beginning of a new chapter.
For the first few months, it seemed like some of my symptoms were improving. I was cautiously optimistic. But about 3-4 months into recovery, new sensations emerged:
a persistent pulling, stabbing, and electric shock-like pain that refused to go away.
I relayed these symptoms to my doctor, and after a series of tests, they discovered new fibroids, endometriosis growth, and an incisional hernia — a complication from the surgery that could only be repaired with another operation. The news was devastating. I wasn’t ready to face another surgery so soon, so I decided to let my body recover before moving forward.
Facing New Challenges
Fast forward to January 2025. Over the previous year, the pain from the hernia had intensified. The fibroids grew aggressively, and my uterus became even more enlarged.
The symptoms I thought I had left behind returned with a vengeance.
Due to the fibroids, the bleeding became so heavy that I couldn’t leave my house during the first week of my period. I would bleed through tampons or any menstrual product within an hour, soaking through my clothes no matter how prepared I tried to be. Basic tasks like buying groceries, going to work, or simply leaving the house became impossible while I was on my period, which lasted an average of 12 days each month.
The physical toll was exhausting, and the emotional weight of isolation and constant inconvenience made it even harder to bear.
My doctor recommended a hysterectomy to address the adenomyosis, endometriosis and fibroids. However, the hernia repair couldn’t be done at the same time due to the high risks involved. I would need two separate surgeries.
At the end of 2024, I had undergone my second excision surgery. What was supposed to be a routine hysterectomy turned into something much more complex. When the surgeons began, they found endometriosis everywhere. My uterus was so enlarged that it had affected the placement of my ovaries, and my abdominal cavity was heavily affected by disease.
The surgery, originally expected to be straightforward, became an intense and exhaustive effort to address the extent of the damage.
Recovery and Lingering Uncertainty
In January 2025, 2.5 weeks post-op, I was navigating a difficult recovery. At my follow-up appointment, my doctor shared just how severe my condition was. They had performed what they described as a “rescue mission” on my ovaries to preserve them, hoping to avoid the need for synthetic hormones. Yet, the symptoms I had experienced since surgery suggested that my ovaries may not be functioning as they should. If this continued, I would have to face yet another surgery to remove them and prevent further pain or the spread of endometriosis.
I was scheduled for hernia repair surgery in February 2025. This procedure was essential to address the incisional hernia that had caused persistent discomfort and pain over the previous year. While the surgery itself was considered routine, the complexity of my condition added an extra layer of caution and preparation. The path forward felt overwhelming, but I held on to the hope that these procedures would bring me closer to a life with less pain and more freedom.
The Financial Burden: Losing My Job
Endometriosis hasn’t just affected my health, it has also disrupted my financial stability. The ongoing costs of managing this condition, including surgeries, medications, specialist visits, and therapies, range between $15,000 to $30,000 annually. The strain of balancing these expenses was already overwhelming, but I had also recently lost my job due to a company-wide layoff.
The layoff came at a time when I was already facing mounting medical bills and preparing for more surgeries. Without a steady income, covering even basic necessities like groceries and transportation becomes incredibly challenging. Every decision feels like a trade-off—choosing between paying for a critical doctor’s appointment or managing daily living expenses. The stress and uncertainty have only added to the emotional toll of this journey.
Moving Forward
Endometriosis has taken so much from me, but I refuse to let it take everything. These surgeries are my chance to move forward, to reclaim the moments this condition has stolen, and to finally breathe without the shadow of pain. But I can’t do this alone.
Every act of kindness, whether through a donation or sharing my story, brings me closer to relief and recovery. Your support means more than words can express —
it gives me strength, hope, and the courage to keep fighting.
Thank you for taking the time to read my story, for listening, and for standing by me in this fight. Together, we can make healing possible.
With gratitude,
Crystal
MomminWithEndo 