I started my period just after I turned 11. My periods weren’t too bad at first but seemed to get progressively worse as time went on. When I was 12, I started having blood clots during my period, and my cramps became worse. One morning when I was at school, in the gym, I passed a very large clot, and there was blood all over the floor. It was very embarrassing. By the time I was 15, the cramps were so bad that I would have to stay home from school and other events. My periods kept getting worse each month.
My first doctor’s visit
When I was 16 ½ I was having pain and pressure daily. I finally told my mom and she took me to the doctor right away. The doctor told me that I had kidney stones, but I did not get any medical images. I passed the stone a couple of days later and the pain lessened. But I would still get random pains and vaginal pressure a couple of times a day. I did not tell my parents about the everyday pains.
A couple of months later the pains and pressure got much worse. I did not know what it was and it really scared me. The pain was bad and I was crying one night because of it. I explained to my mom what it felt like and how bad it actually hurt. She offered to take me to the ER that night, but I did not want to go.
My mom called my doctor the next morning as soon as they opened. She was able to get me an appointment that afternoon. The doctor ordered an ultrasound and I was able to have it that evening. The tech looked shocked. I was freaking out but was trying to remain calm. “I can’t find your ovaries because you have a large cyst,” he said. At that point, I started crying. The tech could not say much at all and that made it worse. When the radiologist read the images he sent the report to my doctor who called my mom right away. I had a 10 cm endometrioma in my left ovary.
My doctor tried to get me an appointment with the local gynecologist and their office said he couldn’t see me for another month. My doctor explained the circumstances and they got me an appointment in two days. The gynecologist called my mom that afternoon, he asked about my symptoms and actually scheduled the surgery for the same day. He had hoped the cyst was a regular blood-filled cyst, but my symptoms and ultrasound results suggested it was likely an endometrioma. He felt it was very unlikely though based on my age.
My first surgery
When I had my surgery, he explained it was worse than he had thought. It was, in fact, an endometrioma and it took a while to clean out, but he found no further endometriosis. I recovered from surgery and was feeling great.
However, less than a month later I started having the same pain again, but less severe than before. I told my mom, and she made an appointment right away. After another ultrasound, the report came back normal. I was relieved but the pain confused me. The next week I started my period, and it was much worse than ever before. A couple of weeks later the pain got worse. I went to the doctor, and she ordered an ultrasound. It came back normal again and we were all confused. My doctor ordered a CT scan for the next week to find out more. My scan showed a rupturing cyst. Even though the fluid-filled cyst ruptured, I still kept having pain.
My doctor wanted to make sure the cyst ruptured completely, so two weeks later I got another ultrasound, which showed a 6 cm hemorrhagic cyst with a 3 cm blood clot inside it.
University hospital visit
My pain kept getting worse, I went to multiple doctors desperate for relief, but they kept blaming all my pain on the cysts. However, they could not explain the pain I was in for the two months when the ultrasounds came back normal. One morning I was in a lot of pain and not able to go to school.
My mom decided that she was going to take me to a big university hospital ER to try and figure out what was going on. I received an MRI there, and the reports came back showing deep infiltrating endometriosis along with an endometrioma in my left ovary.
My excision surgery
I went back to my gynecologist. He read the reports and sent me to a specialist who did excision surgery. I went to this specialist, and he wanted to do surgery, he was very confident that he could fix it. I knew deep down that it was not going to work but I got the surgery. He found a decent amount of endometriosis, and I immediately started feeling better.
“It’s just in your head”
I was so relieved and full of joy. But only three weeks later my pain and swelling came right back. I was absolutely devastated. I went back to this specialist and told him that my endometriosis was back. He told me that, that was impossible. He told me to go to physical therapy, and the only pain I could possibly be feeling was nerve pain. I knew that was not the case, especially with my severe abdominal swelling and he said it could be gastrointestinal. I knew that was not it. It was the endometriosis he told me that was impossible.
Multiple doctors told me that my pain was in my head and that I needed to see a counselor, and physical therapy would help. The gynecologist who did my first surgery always believed me. When I went back to him and told him what the specialist said, my gynecologist said: “ that’s a bunch of bull crap, why is he so afraid to admit that it is back?” I was so thankful that he believed me.
My pain was way worse than it is ever was. My gynecologist tried different medicines including Lupron injection. It did not shut my periods down at all. They were even heavier and much more painful than ever before. He decided that I needed to do another surgery.
I knew this surgery was not going to work either. It was just a bad feeling. I had the surgery just three months after my previous one. My gynecologist said it was the worse endometriosis he had ever seen in his 30 years of practice.
The surgery did not work at all. I was so depressed and the pain was so bad that I could not sleep. I had to take Percocet just about every day to bring the pain down from a 10 to a 7 if I was lucky and I had to go to the ER multiple times because of the pain.
Finding Dr. Seckin
My mom was so desperate at this stage that she looked up “ best endometriosis specialist in the world” on the internet and Dr.Seckin came up. We read his reviews, women’s testimonials and watched his surgery videos.
We went up to New York to see Dr. Seckin. He was very knowledgeable and very honest. He said that he wanted to do my surgery. I just knew that this surgery would work.
A month later I went up to New York for my 4th and final surgery in a year. My surgery was over 3 ½ hours long and very extensive. At my post-op appointment, he told me that I was incredibly tough and strong. He told me that I must have been in a ton of pain, but the pain was finally over. I started crying because I knew he was right.
Before my surgery I could not even bend over and could barely walk because of the pain. I had to be home-schooled because of all the pain. Now I am 100% pain-free. I can fully function, dance, jump, and go to school every day of my senior year. I am four months out from surgery by Dr. Seckin and I feel absolutely amazing!
Emily’s Parent’s letter
Dear Dr. Seckin
Words cannot begin to express how thankful we are to you! Emily had been battling endometriosis for a while and was not able to live a normal life for over a year. She was on homebound most of her junior year of high school and was unable to even do simple things like shave her legs. She lived in constant severe pain every day.
We had tried everything we could to manage her disease. She had three surgeries in Virginia in 10 ½ months and non of them provided relief for more than a few days or a few weeks.
We made the decision to make the trip from Virginia to New York and immediately knew that that was the right step. Emily had her three and a half hour surgery with you on August 3rd, 2018. That day was the start of the rest of her life. It took her longer to recover, but we knew it was because of how much endometriosis and scar tissue you had to remove. Even her post-op pain was less than what she was experiencing before her surgery.
Emily is now pain-free and living the full life that she deserves! She now has the correct information about this terrible disease that so drastically changed her life and made her go through many surgeries and disappointing appointments. She is using her knowledge to tell people in support groups what really works. Our hope through all this is that we can help other girls and women get the help and information that they so desperately need and deserve.
We hope you have a blessed New Year. You have blessed us greatly.
Love, The James family
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