It started when I was 12-years-old. The dreaded period. I would be on the couch for days with the heating pad thinking everyone went through this. My teens and early twenties were filled with exhaustion, pain and severe bleeding. I can remember talking to my friends about it asking how long theirs lasted; most said 2-3 days. I simply couldn’t fathom that, my lasted 7-8 long days with every PMS symptom there was. My doctors said it was “normal” and that everybody was different. I was put on birth control pills when I was 17. This seemed to make them last only the 7 days with lighter period at the end of my week, but the awful cramps were always there, the heating pad was my best friend.
I got married when I was 25, and went off the pill around the same time. I got pregnant with my first child when I was 26. The pregnancy went as well as expected, though towards the end, she continued to be in the footling breach position. I tried everything from lying upside down on a board, ice in certain areas, radio playing, and lots of praying. She wouldn’t flip, so a c-section was scheduled. I actually went into labor at 37 weeks and 4 days. After the c-section the doctor said that they would have never been able to flip her as her head was stuck under my rib cage. After delivering a 6lb.10oz. little girl, I nursed her for about 10 months. I was then again pregnant about a month after I stopped nursing. The first 6 weeks of my 2nd pregnancy were difficult. I began spotting and went for blood work. The blood work came back with the levels decreasing. The doctor called to let me know to expect a miscarriage over the weekend. It was an awful feeling. Nothing happened over the weekend, and when I went into the office the following week, there was a very strong, healthy heart beat. I had another c-section scheduled and again delivered a healthy 6lb. 1oz. baby girl at 37 weeks and 4 days. My water actually broke with this pregnancy. Again, I nursed for 10 months and had an IUD put in place for the time being.
When my youngest daughter was about 15-months-old, the awful pain started again. I did not have a period because of the IUD but the pain continued pretty consistently. The doctors thought that the IUD was causing the pain, and because I thought that we were done having children, I went in for laparoscopic surgery to have my tubes tied. The outcome of that surgery was the first time I had heard the word Endometriosis. The doctor stated that there was a small amount of endometriosis and that he had “removed” it. I felt good for about 6 months. When I returned back to the doctor with the pain again, he stated that there was nothing more he could do, except to put me on birth control. I tried it. It didn’t help.
I moved my records and went to a doctor who came highly recommended by my co-workers. The first time I saw here she was very understanding of my pain (when I refer to pain, the symptoms were, hip to hip stabbing, hot coal feeling, radiating down my legs and around my back) and wanted to help. We started lupron. I was on lupron for approx 9 months total. The first 5 months I felt pretty good. I did experience the “menopausal” changes, awkward at 32 to say the least. After the 5 months, I couldn’t take it much longer, my joints and bones started aching, I gave it 4 more months then requested we try something different.
She sent me to at “specialist” who deals with endometriosis often. I then found out that he is a fertility specialist. I went to see him. He seemed pretty sure he would be able to help me. He wanted to do more surgery, his plan was to “go in and see” what was there, as well as to remove the fallopian tubes, because that was likely what was causing the pain as well. I went in for out patient surgery. I came out from surgery with no fallopian tubes, and he took my appendix as well stating that is was covered with Endometriosis but to be assured he removed all of the other Endometriosis as well. It took some time for me to come around after this procedure. I went home and waited to feel better. Unfortunately, that never happened. I had gone back to the ER where I had the procedure, I was told that my pain was post op and that I needed to walk more to move the air out. I did just that, in pain the whole time. I knew that the pain was not “normal, or post op”. I had to return to work after 2 weeks of being out. The day I went to return to work I got into a car accident, a very minor fender bender but, I was brought to the ER because I was still recovering from surgery. Upon examination my lower abdomen was very tender. I informed the doctor that it was post op pain. They did a C-Scan any way. The results showed I had appendicitis! The following day I started running a fever and had emergency surgery to “clean out” the infection. I stayed in the hospital for 6 days with a Jackson Pratt tube hanging out of me draining the infection. I tried to follow up with the doctor who did the first surgery, they never called me back.
The pain continued, on top of the endometriosis pain, I began having cysts develop and “explode”. I continued to go to my regular gynecologist. There was not much she could do, she was sorry about my last experience but could only give me pain meds for the cysts that ruptured. I went over a year with constant pain and only taking pain meds for the nights that the cyst ruptured. Eventually, I needed a refill. When I called she said she didn’t feel comfortable fill it. I had used 30 pills in 4 months. She stated that she didn’t feel that was the way to manage the pain. To which I stated “I totally agree! What’s our next step?” Lupron was again the answer. I asked many times if there was anyone else who I could be referred to. She would only refer me to the doctor that did my last surgery. For me, he was not an option. For 3 weeks I waited for my insurance company to approve the Lupron again.
Sitting at my desk on day the pain was so bad I began goggling Endometriosis pain, and an article from Fitness Magazine came up. While reading the article (one of many that I have read through out all of this), Dr. Seckin’s had been interviewed. He removed Endometriosis in a way no one had had ever talked about with me. I goggled him, assuming that he was in California, much too far for me to go. As luck would have it he was in New York City, only about 4 hours away from me. I called the office and they were wonderful! I had an appointment with him in 2 weeks. I couldn’t believe it. Many thought I was crazy finding someone on line on my own. I called my doctor and told her what my plans were. She told me to do what ever I felt I need to do. My husband and I made out way into the city, coming from the country we felt a bit out of place. I was very nervous on my first visit. I had been in pain for so long; it was starting to be part of my identity. I couldn’t run anymore, I couldn’t tap dance; I couldn’t play outside with my kids. I was always tired, I’d work all day and when I came home from work, I only wanted to sleep.
Dr. Seckin and his office staff were great! They gave me hope, something I hadn’t had in a very long time. Dr. Seckin did my exam and an ultrasound. He met with my husband and I after and said I really think I can help you, but I need to get to know you a bit better, I scheduled another appointment with him and another Doctor on his team. He also sent me for and MRI that day. At my next visit we discussed my options. We decided that a partial hysterectomy was the right choice for me. It was scheduled and I met with him again before the surgery.
My trip to Lenox Hill Hospital was a wonderful experience. To say I was nervous was an understatement certainly after the surgery I had previously. I walked in to the OR crying, the staff of nurses and doctors were so understanding and comforting. Dr. Seckin actually wiped my tears away while I was laying there. He will never know the comfort that brought me.
I was admitted after the surgery for an over night stay. My time at the hospital was filled with professional, kind and caring staff. The nurse manager on duty came to check in which was really appreciated. My pain was well controlled through out my stay, and my discharge went well.
I followed up with Dr. Seckin a few days after the surgery, he shared pictures of the Endometriosis that he removed and seemed pretty happy as to how I was progressing. This surgery was my easiest to recover from by far.
As I sit here it has been four weeks since the surgery. I am feeling great! I am back to work full time and actually sleeping through the night. I am walking at night working on getting my stamina back from the years of constant pain. I certainly feel like I am moving in the right direction. I am so thankful that I was my own advocate and didn’t stop my search until I found the best!