How do you want to treat this?

October of 2013 (background): I started experiencing abnormal bleeding, one to two weeks before my actual period, ranging from dark discharge to light blood. The week of my actual period was becoming increasingly worrisome – with heavy hemorrhaging and clotting that would last 7 days. My symptoms included fatigue and mild pelvic pain. I am 43 years old, so I suspected this was the onset of menopause. However, I did fear I had uterine or ovarian cancer.

February 8, 2014: After 4 months of dealing with these unusual symptoms, I decided to see an OB/GYN who was highly recommended to me and affiliated with Englewood Hospital. She performed a uterine biopsy (thankfully, it was benign) in her office, along with a regular exam and routine blood work. She also suggested I get an ultrasound at Englewood Hospital.

February 9, 2014: I went to Englewood hospital to get a transvaginal ultrasound. I had no idea what I was in for because this procedure was not properly explained to me. To make matters worse, the technician performing the procedure started screaming to another technician for help in the middle of the exam. She asked me to hold the wand, so she could get help. She left me alone in the room. Fearing the worst, I started to cry. Thankfully, her associate was a bit more knowledgeable and explained to both of us that it was just my bowel in the way and not a giant tumor. (Note to self: This was the most unprofessional and ridiculous medical situation I’ve ever experienced.)

February 12, 2014: Following the ultrasound, I revisited the OB/GYN at her office in Englewood and learned that I had an ovarian cyst. She explained that the cyst was very small and she said, “It will likely go away on its own.” However, as a precaution, she did a Ca-125 test for ovarian cancer. She also recommended the pill, IUD, and other hormone therapies to stop the out-of-cycle bleeding that I was experiencing at the time. She said, “The bleeding is unrelated to the cyst or anything going on in my ovaries.” She said, “It is all hormonal.”

I told her I wanted to wait for the results of the Ca-125 test before I proceeded with any “band-aid treatments for the bleeding.” I said, “I really want to know if this is my ovary or my uterus. And if I seek drug-related treatment, I won’t know what is causing the real problem.”

She said, “I understand, and the only reason I’m letting you get away with this is because you are not anemic.” I told her about my Englewood ultrasound debacle and she laughed and said, “I can’t wait to bust the Englewood Chairman’s chops. You can’t teach this stuff in medical school,” she said. Not the response I was looking for at all.

February 14, 2014: The OB/GYN calls me at home to let me know my Ca-125 test is slightly elevated. It’s at 37.6. She says, “It’s probably nothing,” but refers me to a Gynecological Oncologist at Englewood hospital whom she highly recommends.

February 25, 2014: Arrived at Englewood for my consult with the highly recommended Gynecological Oncologist. (I noticed that his business card was double-sided, with two different job titles –one for Englewood and a completely different title for Mt.Sinai. I later learned he was really based out of Mt. Sinai, which explained why his Englewood office staff was so scattered – I had to wait in the hallway 30 minutes while my examination room was cleaned. I finally sat down for my consultation with the oncologist and the first words out of his mouth were “How do you want to treat this?”

I said, “Treat what?” Do I have cancer?”

He said, “Uh, why are you here?”

I explained my situation and who referred me. He had my chart right in front of him but hadn’t reviewed it. He seemed really tongue-tied, which I found strange. He said, “Ok, let me examine you and we’ll go from there.” Following the exam, we went back to the consult room and he said, “You have a complex ovarian cyst. I said, “What is that?”

He said, “It’s a cyst with a lot of stuff in it.” He suggested we should probably remove the ovary.

I said, “Is this cancerous?” Is this causing my bleeding?” “Isn’t there another step here before we remove the ovary?”

 He said, “Maybe we should do a pelvic MRI since you already had an ultrasound and go from there.”

I left his office completely pissed off, upset, and confused. I had no idea what had just happened and, I still wasn’t any closer to knowing what was wrong with me.

February 28, 2014: Pelvic MRI – Revealed possible hemorrhagic lesion with signal characteristics of an endometrioma. The Gynecological Oncologist suggested we do a follow-up ultrasound in 12 weeks; he left me with no further direction. I was still experiencing pain and abnormal bleeding. I knew something was wrong. However, it was at this point that I decided I no longer wanted to leave my care in the hands of the Oncologist at Englewood. I felt completely lost.

March 4, 2014: I experienced acute pelvic pain (similar to a pregnancy contraction) that lasted about 10 minutes. I had nowhere else to go, so I immediately drove myself to the emergency room at Englewood hospital, suspecting that I had a ruptured cyst or torsion. I had another ultrasound in the emergency room (this time without incident).  The emergency room doctor told me the cyst was still there but it hadn’t ruptured. I was released from the emergency room with no real answers and not a peep from my doctor. I was really scared.  I needed to find my own way through this and figure out a plan.  I decided to reach out to a friend of mine in town hoping she could help me. I knew her husband was an OB/GYN in the city. I explained my situation and told her I needed a second opinion. Her husband immediately referred me to a surgeon at Memorial Sloan-Kettering.

March 6, 2014: I had secured copies of my two ultrasounds and MRI reports from Englewood hospital. I faxed my MRI results to Sloan-Kettering, and I immediately got a call back and was declined based on the MRI. The representative said I didn’t meet the criteria for the hospital. I told her I had recently been to the emergency room and, was, at that moment, faxing a copy of my ultrasound report to her. She said, “I’ll scan it through and send it to the surgeon, but I can’t guarantee anything will change.” Within minutes, I got a call back from the woman telling me that the doctor wanted to see me the following week, on March 11. It was bitter sweet. I couldn’t believe I was accepted. I was both relieved and terrified. I started to cry.

March 7, 2014: It was Friday afternoon, and I got a call from the Gynecological Oncologist at Englewood. He finally read the ultrasound report (which obviously I had already picked up, read, and faxed to Sloan Kettering) from the emergency room visit three days prior. He said, “I have your ultrasound and it’s clear you have ovarian and uterine issues that need to be addressed. You need to come in and sign the consent forms and get on the surgery schedule.”

I said, “For what kind of surgery?”

He said, “We definitely need to remove the ovary and we should probably do a full hysterectomy because of the ovarian and uterine issues.” He was very quick on the phone with me, and I had no further questions. I was done with this man. I knew I was going to Sloan Kettering, so I said to the Englewood Oncologist, “Thank you very much, have a great weekend.” And we hung up, and I never heard from him again. Unfortunately, I was still left with the entire weekend to think about what was wrong with me, so I studied the internet and read through my Taber’s Medical Dictionary.

March 11, 2014: I was hemorrhaging and clotting badly on this day. It was horrible. I was going through 4 pads an hour. And it was the day of my meeting with the surgeon at Sloan Kettering. He was terrific, and I immediately trusted him. I told him my story and he shook his head in disbelief. He laughed and said, “If Dr. X keeps it up, it means more business for us.” He examined me. Based on my initial reports, and the examination, he didn’t think I had cancer, and he didn’t think I needed a hysterectomy. However, he did believe I had an endometrioma and more going on, so he ordered another ultrasound and more blood work.

March 26, 2014: I suffered acute pelvic pain, this time lasting 30 minutes (again like pregnancy contractions). I was terrified. The pain and bleeding were getting worse. I also started experiencing digestive issues, bloating, gas, vomiting, etc. I had the ultrasound from Sloan Kettering. The doctor from Sloan called me and said “I think you have endometriosis, and I want you to see an endometriosis specialist.” I said, “I know what endometriosis is but I didn’t know there were endometriosis specialists?” He said, “I want you to see Dr. Seckin.” He didn’t give me any other names. It was clear this was the person I was supposed to see.

April 1, 2014: My husband and I were on our way to meet Dr. Seckin in the city. I was skeptical because of all that I had been through, but I was looking forward to getting some answers. Surprisingly, Dr. Seckin was like a breath of fresh air. It was clear from the very beginning that he was no garden-variety doctor. Unlike the other doctors I had seen, Dr. Seckin spent a considerable amount of time with me. He was curious, inquisitive, and clearly passionate about his field of expertise and, more importantly, interested in what I had to say. In fact, he listened so intently and asked rapid-fire questions with such vigor, and sharpness that I was caught off guard initially.  However, I wasn’t intimidated, I was inspired by it. Dr. Seckin was clearly sharp and keenly aware of all the nuances of this condition. He understood all my symptoms, and he validated everything I was experiencing. The actual exam was simple and painless. He said, “I really think you have endometriosis.” I didn’t get any of those strange, blank looks I had experienced from other doctors. He knew exactly what was wrong, and I was in the right place -finally.

April 16: I had a pre-op physical at 11:30 and a pre-op consult with Dr. Seckin at 2:30. I think we must have spent two hours talking. I realized more and more that this doctor was very unique. Not only did I trust him, but he was entertaining and very human, and he clearly knew endometriosis like he had lived it personally. The surgery was scheduled for Thursday, April 24.

April 24: The day of the surgery. (I should mention I never had surgery before). I had no idea what to expect. I was told I would be visited by three people (it was like the movie, A Christmas Carol). I was visited by the anesthesiologist; Teresa – Dr. Seckin’s assistant in surgery; and an urologist. They were all amazing, and I felt reassured by these individuals. After these discussions, Dr. Seckin came in and explained the surgery again to me. I was nervous, but at ease. It was time.

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