Mikka’s Endometriosis Story

I had unexplainable symptoms for two decades, including pelvic and abdominal pain, painful and heavy periods, and painful ovulation. In February 2020, my pelvic pain was so drastic that I went to the ER multiple times and had several ultrasounds, blood tests, and CT scans that revealed nothing. After a few more weeks, when the pain had completely incapacitated me, my gynecologist offered to do an exploratory laparoscopy. She took several biopsies of presumed endometriosis—a disease I’d never heard of despite being a nurse myself for eight years. She also did a D&C and found a hemorrhagic cyst on one of my ovaries that ruptured when she began the surgery. When I woke up from surgery in even more pain, the doctor claimed I was too dramatic and even accused me of being a drug seeker. This is a glimpse into the medical trauma and gaslighting I endured.

As the pain continued, and after the pathology report confirmed I had endometriosis, I found an endometriosis specialist in Boston, who did my second surgery in May 2020. The specialist excised endometriosis from several areas of my pelvis, but the pain persisted to the extent that I could not do my job as a nurse and had to go on short-term disability. Though just 31 years old, I was soon put into medically induced menopause, which did nothing to help. I continued to seek solutions for the pain through numerous ER visits, ultrasounds, CT scans, and IV fluids. Every medical provider I encountered insisted nothing was wrong and, again, that I was being dramatic and seeking drugs. This treatment caused me to develop PTSD, which I still struggle with today.  

I was disabled for more than a year, until the summer of 2021, and was let go from my job during that time. In October, feeling well enough to work again, I started a job as a triage RN at a local hospital and loved it. But the pain returned after six weeks, and I lost my new job. I was devastated, as nothing prepares you for the day your body will suddenly stop working and create chaos in your life. I had a disease that nobody understood or knew how to treat, couldn’t work because of it, and didn’t know where to turn. I probably looked fine on the outside, but inside, I was dying. I couldn’t eat. I was continually fatigued and nauseous. My family and then-fiancé (now my husband) were supportive in every way and validated my pain every day, but it didn’t change the isolation and loneliness this disease inflicts on those who have it.

One night in November 2021, I was writhing in pain in bed. I refused to go to the ER again, as they never took me seriously, so I searched for the best endometriosis specialists in the country. That led me to the Seckin Endometriosis Center in New York. I know Dr. Seckin doesn’t like to be the focus of or even mentioned in these patient stories, but the team at his office gave me more help and validation in one phone call than I had received in the previous 20 years combined. After looking at photos I’d brought Dr. Seckin from previous doctors, he knew they had not adequately removed the endometriosis. In January 2022, Dr. Seckin did my third surgery—and it changed my life.

When I woke up from surgery with Dr. Seckin and Dr. Chu, I felt very little pain. Dr. Seckin told my family and me that it was far worse than they thought and my pain was real. In a surgery that took several hours, they found endometriosis throughout my pelvis and bilaterally on my fallopian tubes and ovaries. My left ovary and fallopian tube, where most of my pain had been, were twisted upside down and adhered to my pelvic wall. Within those adhesions and scar tissue was a two-inch pocket where my left tube, ovary, pelvic nerves, and ureter were tangled. My left ureter was 90 percent occluded, which eventually would have damaged my left kidney. Because these organs and nerves were tangled in scar tissue, every cyst that grew on my ovary was intermittently cutting off the blood supply to my bladder, kidney, and ovary.

To hear Dr. Seckin say how bad it was and that my pain was real was the first time I’d felt validated by a medical professional.

After recovering from that surgery, I had virtually no pain for the next 18 months. For the first time in ages, I was able to get relief from Tylenol, Advil, and a heating pad. I did a lot of work on healing my mind, body, and soul, and I got my previous job back. I experienced normalcy for the first time in decades and never took one second of it for granted. 

Unfortunately, in August 2023, the intense pain on my left side returned. When over-the-counter therapies didn’t work, I returned to the Seckin Endometriosis Center. The pain was sharp, like a knife stabbing me, and radiated through my back, hip, thigh, shoulder, and chest. I couldn’t urinate or have a bowel movement without pain and needed assistance doing simple daily tasks. I also had to stop working temporarily. Endometriosis is a chronic disease with no known cure, and though I’d had a lengthy reprieve, it appeared that it had returned.

On September 15, 2023, I had my fourth surgery. In this one, they found my left fallopian tube and left ovary tangled and adhered in thickened scar tissue to my colon. My left ureter also had thickened scar tissue. My fallopian tube had essentially formed a knot, which was intermittently cutting off the blood supply to my left ovary. I also had several cysts on that ovary. Dr. Chu said that just one of these findings would have been enough to explain my pain.

Why am I sharing my story now? Because it might help you or someone you love. Why did I persevere and never give up despite great odds? Because I knew there was more to life than pain.

Please don’t give up.  That may not mean much coming from a stranger, but you have to have hope. Even when all your strength is gone and you’re depleted in every way imaginable, you must keep fighting. Your life is so worth it, and there are surgeons who have the education to fight this horrific disease. Never stop advocating for yourself, listening to your body, and searching for answers. I did, and I’m better than I’ve been since I was a teenager because of it.

Mikka B.