Patient E James. and her parents share their gratitude for Dr. Seckin in these heartfelt open letters.
by E. James.
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 clotting during my period, and my cramps got worse. One morning when I was at school, in the gym, I passed a very large clot, and blood got 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 with every period.
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 from all of my symptoms, but I did not get any medical images. I passed the stone a couple of days later, the pain lessened when I passed the stone. 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 I was very scared. 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 was not sure what exactly was going on so she ordered an ultrasound and I was able to get it done that evening. The tech looked shocked when she was looking. I was freaking out, but trying to remain calm. “I can’t find your ovaries because you have a large cyst. I started crying. The tech was not allowed to 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 ob/gyn, and their office said they couldn’t get me in for another month. My doctor explained the circumstances and they got me an appointment in two days. The gyn called my mom that afternoon, he asked about my symptoms and actually scheduled the surgery for the same day that my appointment was scheduled for. He had hoped the cyst was a regular blood-filled cyst, but my symptoms and ultrasound showed it was likely an endometrioma. He felt it was very unlikely though based on my age and they weren’t very common.
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, not even 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. I got another ultrasound, but the report came back normal. I was relieved but confused about the pain. The next week I started my period, and it was much worse than it had ever been. A couple of weeks later the pain got worse. I went to the doctor, and she ordered an ultrasound and again. It came back normal again and we were all confused. My doctor ordered a CT Scan for the next week to find out more information. When I got my scan, it showed a rupturing cyst. Even though the fluid-filled cyst ruptured, I still kept having pain.
My doctor wanted to make sure the cyst was completely ruptured, so two weeks later I got another ultrasound, it showed a 6 cm hemorrhagic cyst with a 3 cm blood clot inside the cyst. My pain kept getting worse, I went to multiple different doctors desperate for relief, but they kept blaming all my pain on the cysts, but they could not explain the pain I was in for the two months the ultrasounds came back normal. Desperate for answers, 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. I went back to my GYN, 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. I got the surgery, he found a decent amount of endometriosis, and I immediately started feeling better. 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 possibly be GI. I knew that was it. It was the endometriosis he told me that was impossible. I have had multiple doctors tell me that my pain was in my head and that I needed to see a counselor, and physical therapy would help. The GYN that did my first surgery always believed me. When I went back to him and told him what the Specialist said, my GYN 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 had ever been before. My GYN tried multiple different medicines including Lupron injection. It did not shut my periods down at all. They were even heavier and much more painful that they had ever been before. He decided that I needed to do another surgery. I knew this surgery was not going to work either. I just had a bad feeling. I had the surgery just three months after my previous one. My GYN said it was the most endometriosis he had ever seen in his 30 years of practice. The surgery did not work at all. I was so depressed the pain was so bad 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. I had to go to the ER multiple times because of the pain. My mom was so desperate at this time that she looked up “ best endometriosis specialist in the world” Dr.Seckin came up. We read his reviews, women’s testimonies 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, barely walk because of the pain. I had to be home-schooled because of all the pain. Now I am 100 percent pain-free. I can fully function normally, dance, jump and go to school every day of my senior year. I am 4 months out from surgery by Dr. Seckin and feel absolutely amazing!
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, everyday, severe pain. We had tried everything we could to manage the endometriosis. She had 3 surgeries in Virginia in 10 ½ months and more provided relief for more than a few days up to a few weeks. We made the decision to make the trip from Virginia to New York and immediately knew 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 to the rest of her life. Recovery was longer than her other surgeries, 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 is empowered with correct information about the 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