My Journey: The detection, the diagnosis, the care leading up to the big day, surgery, recovery & life after the procedure

My name is Karina A., I am 35 years old and I opted to have my stage IV Endometriosis treated with laparoscopic surgery.

After a great deal of thought, I approached 2013 with the hope that I would explore the possibility of becoming a mother. I initiated my inquiry about potential motherhood with an appointment for my annual gynecological visit. I reached out to an entirely new gynecologist at the end of 2012. I did so because of a referral during a chance conversation I had with an acquaintance from work. During that annual visit, I shared my recent revelations about wanting to be a mother; I asked her if I should get a sonogram to see if it would even be possible. She thought it was a good idea both because of my reason for the request and, later because she felt something out of the ordinary during the exam.

Faithfully, I scheduled the sonogram and waited for the results, and then they came. The precautionary sonogram was the maneuver that would allow me to understand that, what I just accepted as normal symptoms of being a woman who gets her period, were anything but normal. All my life I thought I was one of those women who got her period “really badly”. That is, I had symptoms that included; spotting in between periods, heavy blood flow, leg aches, inability to stand upright on a couple of occasions, headaches, and uncomfortable cramping in my abdomen and back. Even reading this back I can’t help but think, this is parred for the course, Karina. The results were explained like this, “I am glad that you followed up with this. You have things wrong with you that need to be addressed immediately.” I was referred to an oncologist. I was frantic, and so the journey began.

As I sit here and reflect on my journey over the last 4 months, I can’t help but feel both empowered and fortunate. I was proactive: I sought out 2nd and 3rd opinions. It was through my conviction to find answers that I was led to medical professionals who helped me understand my symptoms and my disease. But most importantly, led me to the doctor who would go above and beyond to ensure my care, safety, and my ability to reproduce.

I never did see the oncologist; he was very difficult to make an appointment with. I had a sense of urgency so, I reached out to another gynecologist my mother and sister referred. During my visit to the 2nd gynecologist, Dr. Samuel Levin, a light was cast over exactly what was wrong with me. He suspected that I had endometriosis and that it was quite advanced. Knowing that he was not an expert, he referred me to someone he knew was. He referred me to Dr. Seckin, a leading doctor in the field of laparoscopic surgery & endometriosis research.

Upon Dr. Levine’s urging I went home and researched Dr. Seckin and while I grew impressed by his body of work and knowledge, I also started to feel less alone. I am not the only woman who has been suffering like this. There were so many other women out there just like me and Dr. Seckin had treated them. For the first time since getting my vague sonogram results, I started to feel hopeful.

Immediately I called and made an appointment with a bit of trepidation, he didn’t take my insurance. I expressed that to the receptionist, and she listened and let me know that she would speak to Dr. Seckin and see what could be worked out. A few days later I received an email letting me know that he would take my case pro bono.

The day of my initial visit came. He took me into his office and performed his own assessment of my condition. He concurred with Dr. Levine and let me know that all those symptoms that I had been suffering were due to stage IV Endometriosis. He informed me the surgery was necessary.

Given his honest and straightforward nature, he reiterated exactly why he was taking my case pro bono. He, better than anyone, understood that my case was so difficult- stage IV endometriosis: two large “chocolate” cysts in each ovary. He assured me that: very few surgeons would be able to pull off what he could, and his conscious would haunt him if he knew that I would have undergone the procedure with any other doctor.

While he exhibited a great level of compassion, he was a straight shooter. He was straightforward and the confidence he exuded gave me added reassurance. Therefore, the relief I felt was enormous. Truth, I had all these what-ifs floating around in my head about what would happen to me. Would they find other things wrong with me? Would the biopsy reveal cancer? What if I can never have children? However, I didn’t have the added financial worries. But most importantly, I trusted the level of care I was going to receive would be above standard level care. I was in the best hands possible.

In the month leading up to surgery, Dr. Seckin had me visit his office to observe the cysts for any changes. In addition, he made me get a pelvic MRI, and consult with a proctologist to ensure that there wouldn’t be further complications. After my visit to him, the proctologist let me know that he would be assisting on the day of my surgery. That whole month before surgery I felt so supported and well prepared. I started to understand that Dr. Seckin, as skilled as he is, was covering all his bases and orchestrating a team of doctors to care for me.

On the day of surgery, I arrived at the hospital and was greeted by nurses and the medical team, I felt nervous but safe. While my procedure was meant to be two hours long, it ended up being six hours. Yes, what needed to be done was very involved and needed extra time and attention. Dr. Seckin and his team took their time and performed their best and worked through it with diligence and the highest level of commitment. Once I woke up and was informed of that, I cried. I didn’t cry because I was in pain but because I felt so cared for. They worked so hard and collaboratively to ensure that I was safe and sound. I knew that I had been in the hands of greatness, an effort that was orchestrated by Dr. Seckin. At this point he had seen me through this journey and over the most difficult part.

Dr. Seckin managed to perform the six-hour surgery all through laparoscopic means. There were no large cuts made, my reproductive organs were entirely intact. The fact that the surgery was done entirely laparoscopic my recovery time was minimal. I was up and ready to shower four days after surgery. I was walking myself to the car two weeks after surgery to journey from New Jersey into Manhattan to go in to get my stitches removed. I was driving two weeks later. And finally, back at work three weeks after surgery.

It is now two months after surgery and I feel wonderful. I am back in the gym doing cardio and working as if nothing happened. I have had my period twice each time it has gotten better. I have had minimal crapping and the duration has been shorter each time.