Elisa’s Endometriosis Story

My name is Elisa and I am 32 years old. I work as a nurse at Memorial Sloan-Kettering Cancer Center. This is my endometriosis story.

The early years

I had my period at 12, and from what I remember, it was “normal” – heavy, but not painful. The only other symptom I had at that time was some pretty bad anxiety. I didn’t realize the two symptoms went hand in hand as I just thought junior high school was tough and things would get better when I got to high school.

And things did get better because I stopped getting my period.  It’s called amenorrhea. I had joined my high school track team and I was running nine miles a day. Amenorrhea is quite common in young athletes. Since I wasn’t getting my period, my anxiety disappeared until senior year of high school. I guess you can say that’s when my endometriosis nightmare began. 

It was a tough year for me emotionally. Along with my period returning, my anxiety came back and I went from feeling excited about leaving for college to feeling completely terrified. I thought it was normal, but looking back now, I realize it was not normal at all.       

Passing out from the pain  

The first time I passed out from the pain, I was 17 years old. My mother, sister, and I were on our way to see Rent on Broadway. While in the car, I felt a horrendous pelvic pain. We stopped off at a bathroom and because I was as white as a ghost, my mother came in with me. Thank God, because when I passed out, she caught me. I can’t remember if I had my period at that moment, but I got a full workup: an EKG, an endoscopy of my upper GI tract, and an ultrasound of my uterus. Of course, everything looked normal since endometriosis is invisible. Based on my symptoms, I was diagnosed with IBS.

Strangely, as I look back, my periods were not always bad. They were definitely longer and heavier than my friends’ periods lasting on average seven to nine days, but I wasn’t usually in horrible pain. 

A few years after I had first passed out, I got a terrible pelvic pain and passed out again. Over the course of the next five years (from 18 to 22 years old), I passed out another three times. I had a total of four endoscopies and two colonoscopies, which were always normal since you can’t see endometriosis on a colonoscopy.  

Endometriosis lies on top of organs, unless it is severe and has completely infiltrated the bowel or some other organs. But they were looking with a scope and a camera inside the bowel. The doctors in Albany where I had gone to college, and in Staten Island where I had grown up, didn’t see anything.  

Continued misdiagnoses

With my symptoms of fatigue, nausea, diarrhea, and pelvic pain, they continued to diagnose me with IBS telling me my periods were normal and that every woman is different. Repeatedly I was admitted into the ER for what I thought were stomach viruses, experiencing nausea, vomiting, and belly pain. As I look back now, I realize it was all the endometriosis.

After I graduated from college, I saw a nurse-midwife, NP in Staten Island and she put me on birth control in case cysts were the reason why I was passing out. I took the pill for a year and a half but it made me extremely sick. I worked the night shift as a registered nurse and by 4:00 AM, I would sometimes be dry-heaving in the bathroom. So, I tried to change the time I took it, but I remained nauseous the entire time.  By the time I was 27, my periods were nine days long and very heavy. The only option my gynecologist gave me was to put me on birth control again. But because I didn’t want to experience the level of nausea I experienced in the past, I decided to refrain from taking the pill. 

I still can’t understand how all those doctors and specialists never thought about endometriosis. How is it not on their radar? This year, after conducting my own research, I read that it takes on average about seven to ten years for most women to receive a diagnosis.  

Trying to control the pain with birth control pills

As the years went on, my periods got more painful. Right before my wedding, the pain was waking me up at night. I needed to make sure a bathroom was close by during the first three days of my period because it was that heavy. I was due to get my period the day before my wedding and since I did not want it the week of my honeymoon, I asked my gynecologist to put me on the pill, which made me feel really good. It was Generess Fe. I had no nausea and had a lot more energy. I stayed on it for a few months but ended up stopping three months later because my husband and I knew we would want to try to have children soon.  At this time I was 30 and I felt good for about a year. 

The added stress at work

In November of 2013 I had just turned 32, and my boss put me on a big project. With the increase in responsibility, came a huge increase in the level of stress I was under. I had chronic neck and back pain after a car accident in 2007. I knew I had certain limitations because of that accident. But I worked hard and kept going until the project was done. 

It was finished on April 11, 2014. But instead of getting to enjoy the job I did, I learned the hard way that stress and endometriosis do not work well together. I was also in a lot of pain. My foot had been bothering me for over a month and I was in a boot for what my doctor at special surgery thought was tendonitis. I learned later from Dr. Seckin that my leg pain could possibly be sciatica from the endometriosis. 

Passing out again

Three days later, on April 14, I had severe stomach pain and cramps. It was the second day of my period so I knew it was going to be a rough day. I took my usual 800 mg of Ibuprofen and stayed in bed. By the evening I got bad cramps and went into the bathroom. As I sat down on the toilet, the pain got so bad that I knew I needed help. I stood up to open the door to call my husband. I tried to scream his name, but nothing came out. It had been ten years since I had last passed out. I had no warning at all this time. I don’t remember anything else until I heard his voice shouting

“Elisa!! Elisa!! Wake up!” 

The poor guy was calling for an ambulance. I had been unresponsive for four minutes after hitting the right side of my head on the tile wall and floor of the bathroom. My knees were blocking the door and I wasn’t breathing normally.  

It’s amazing how our bodies can adapt. They continue to cope with the abnormal until we can’t remember what normal is anymore. Maybe my period was always heavy, but little by little I think it got heavier and more painful as endometriosis started building up. It’s so hard to remember from month to month let alone year to year. 

Soon it wasn’t strange to be woken up by pain during my period. Wasn’t everyone? Or so I thought. I never learned about endometriosis in nursing school. It wasn’t covered during my six month rotation of labor and delivery. I can’t understand why as it’s a leading cause of infertility. 

Trying for a baby

This year, my husband and I had been trying to get pregnant for 10 months without any luck. The sad part is, I have missed 15 years of health and wellbeing. If I wasn’t passing out, it was severe fatigue, tonsillitis, and recurrent infections. I learned later that endometriosis puts us at an increased risk for infection. The anxiety that I have experienced through the years has been awful. I kept it a secret because I was embarrassed.

Seeing Dr. Seckin

By the time I saw Dr. Seckin, I was really sick. I truly appreciated his compassion, understanding, and sympathy for what I was going through. I finally felt like I wasn’t crazy.  

On July 11^th, I had laparoscopic surgery. He found 20 patches of endometriosis throughout my pelvis. It was on my ovaries, peritoneum, and appendix, which Dr. Ansari removed. And it was in the rectum, and around the tubes that empty into the bladder, just to name a few places. 

What I appreciate the most about Dr. Seckin is that he is so real. Before surgery he didn’t sugar coat anything. Some people may not like that style of medicine but as a nurse, it’s refreshing and important. You need to be able to trust your doctor and to know that he is being honest with you. If I can say one thing about Dr. Seckin, it’s that he is an incredible surgeon. I completely trust him. He removed a lot of endometriosis but I got out of surgery with all my reproductive organs. They took my appendix because it was completely infiltrated with endometriosis. But again, I woke up with every one of my reproductive organs. I am so very grateful.

A note of thanks to the whole team

Dr. Seckin’s entire team: Ansari, who is the colorectal surgeon, Dr. Digregorio, his surgical resident, and his nurses Lucy and Kim are all fantastic. Lucy and Kim work in his office and they are extremely knowledgeable and helpful. Lucy is so kind and her voice is very comforting. She was the first person I spoke to in Dr. Seckin’s office and she was the one I spoke to when I was having trouble urinating after surgery. She and Kim have guided me through a lot during this process and have made everything so much easier. 

Very soon after surgery, in the recovery room, I realized my neck and back pain were gone. My sciatica and leg pain was also gone and I felt really good. Yes I had surgery and was definitely sore, but I had color in my cheeks again. I wasn’t deathly pale anymore and it hadn’t even been an hour after surgery. 

As I write this, it is now two weeks later and I feel great.  I’m still healing but I am no longer exhausted all the time. I no longer need to nap in the middle of the day and I can function like a normal person. I am beyond grateful to have my life back. 

The care that I have received from Dr. Seckin and his staff has been excellent. In some ways I wish I was diagnosed earlier but in other ways I am grateful that the first and only surgeon that operated on me was the best one.