My journey with endometriosis started at a young age

I am 20 years old and my journey with endometriosis started at a young age. When I first got my period, I was about 11 years old. They were never pleasant and always heavier than the rest of my peers. A couple years later I saw one OB/GYN in Virginia to see if we could figure something out to make these very painful periods more bearable. My mom has a history of Endo from a young age and she knew that the signs and symptoms I was showing were identical to her case. The Virginia doctor told me that there’s no way I could have Endo this young, and said that she’d put me on some hormonal treatment and go from there. While on the first Birth Control/Hormone therapy, I had three miserable periods per month. My body was completely out of whack. This doctor decided to go for a different hormone and birth control. While on that one I was a complete zombie, and my body just felt miserably numb. The Virginian doctor said that I should stay on this hormone and deal with the consequences. I then realized that I needed
to see someone else. I found another OB/GYN in Maryland who looked promising. She was a “boutique” doctor which I was not expecting. I explained my predicament with her and my mom explained the Endo issue, and she told us that I needed to try a few more hormone therapies. She gave me one which I had another bad response to, and then we tried the Nuvaring to see if that would make a difference. The periods never got better, and I only became physically sicker which each hormone attempt. After the Nuvaring didn’t work out she prescribed me Ponstol, and said that I just had to deal with my severely painful periods. I would have one week of pain preperiod, one week periods, and one week of post-period pain. I only had one week each month of peace. When my mom and I asked her about a laparoscopy or some sort of Endo treatment she told us that to do a laparoscopy she would have to put me on hormonal therapy for the rest of my life post-surgery. She said that there was no way to even diagnose endometriosis without permanent hormone therapy. For the next years ibuprofen became my best friend. I had the Paraguard IUD put in as a birth control method and went off to college. When I was in school in Vermont, my periods became unbearably painful, doubling me over in classes and making it a struggle to get from my dorm to class then back to my dorm. I slowly decreased being able to teach yoga and go for my runs. My pain had always been extreme and caused me to double over, but I had tried to mask in when I was in public. Up at UVM, the start of the rapid and severe decline had started. My pre-period pain and post-period pain each became a week and a half, leaving me only a few days a month of peace. That summer (2013) I worked in Connecticut at an internship and transferred to a college in CT. My pain became even worse, and kept increasing in an exponential level. I loved to teach yoga and run, but by Fall 2013 I couldn’t even fathom doing either at all. I began looking into Endo doctors and with the help of my mom, found some. I set up an appointment for February 2014 with the OB/GYN with Yale who “specialized” in Endo. When I went to see her I explained that I couldn’t be in hormones due to my extreme adverse reactions, and she rejected that completely. She said that she wasn’t a
specialist in Endo but that it seemed like “all I wanted was to have surgery.” She snapped at me when she said that and started to get really angry at me for saying that all I wanted was to find a way to get through my days. She then raised her voice at me and began going on a rant about how I couldn’t use hormones and that I needed to use them. After I cried in her office pleading that she give me the name of someone who cold help me, she finally did. I set up an
appointment with Connecticut’s Leading Endo expert, who works with Yale. I felt like finally my voice would be heard and I could resolve this problem. My appointment was for May 2014. By then, my periods were heavier than imaginable. I would go through an overnight pad within a mere hour and a half. I started sleeping to cope with the pain since it was on a level that I had never experienced. Ibuprofen was a joke. Nothing would relieve this pain, and I had it consistently pre-period and post-period too. I had maximum, two days a month of semi-peace. The rest were unspeakably brutal. Finally it was May and my appointment was here. I was very nervous going into the appointment. When I met with the doctor, I brought my mom so that she could explain her experience with Endo (to prevent another February type scenario). This doctor kept interrupting us as we were explaining my case, and the hormone issue. She was very abrasive and repeatedly was saying how hormones were what I needed at wouldn’t hear us out. Finally I got pretty frustrated and said I WILL NOT take hormones, so there has to be something else she could do. She said that I needed to be on chronic pain medications, and suggested I see a doctor to prescribe me constant narcotics for the rest of my life. I was completely against that idea and said that in the line of work I’m going into I could not be on narcotics. She said that the chronic pain medications and seeing an Ayurvedic-type of doctor was my only options. I was livid. Being a yoga teacher I went through Ayurvedic lessons and had to learn some. I knew that there was absolutely no way that was going to help me. I told her no to both, but she wouldn’t hear it. After numerous back and forths, she agreed to do an in office ultrasound to look for the Endo. Whe she was looking at my ovaries (she was extremely rough) she saw growths on them and said it could be endometriosis but she didn’t know. She said she couldn’t figure it out…it might be, it might not be, she kept repeating like she was convincing her self. I knew immediately that she was not the doctor for me. She said I had an 80-90% chance that I had endometriosis and that she could do a laparoscopy, but it would be strictly exploratory and probably wouldn’t cut any endometriosis out. I wanted to run for the hills. I knew there had to be better out there. She gave me the number for the chronic pain doctor and the Ayurvedic person and asked me to schedule the surgery the following week. She was unbelievably unpleasant and I was pretty shaken up by that appointment.

My mom did some research on other Endo specialists and found the name of Doctor Seckin. She contacted the office and actually talked to Dr. Seckin himself on the phone! Lucy was fantastic to work with, accommodating to switching appointment dates (my insurance changed because I got married) and was able to get me in to see Dr. Seckin the first week of August, which was when my new insurance started. I was EXTREMELY scared to go down to NYC to see him and I kept playing my experience with Yale in my head. Once we got in to see him, he immediately greeted us and asked about who each of us were, and some details about us (my mom, my husband, and I). The rapport that he established with us from the get-go eased my nerves, and made me realize that he was going to be different. We discussed my case and my experiences, and he assured me that there would be no need for chronic pain medication. He examined me in the exam room and within seconds of the sonogram he said I absolutely have Endo and I would need surgery. When I went back into his office we discussed how my case was a “tough cookie” case considering the hormone and other restrictions, but he said he could do it. He gave me the name of Dr. Wilson who I was required to see before my next appointment and also get an MRI done. Dr. Wilson was so accommodating, we were able to do a “one stop shop” as I called it where I saw Dr. Wilson, got my MRI done, and had my follow-up appointment with Dr. Seckin in the same day. Dr. Wilson was amazing and acknowledged all of my husband and my concerns. He explained the procedure to us and by the end of the meeting I wasn’t so nervous about the surgery. It turns out the Dr. Wilson was on vacation, and he came in on that day especially just to meet with my husband and I. I was amazed and extremely thankful for him. When I was in my follow up appointment with Dr. Seckin, he said the MRI results showed that the Endo might have spread into my right kidney. He gave me the name of Dr. Brodherson, a Urologist, that I needed to see.

Within a day I had an appointment with Dr. Brodherson, and he ran more tests and did X-Rays. He was very good about keeping me in the loop and worked with Dr. Seckin to figure out my surgery. The pain was so bad, that I was admitted into the Lenox Hill Hospital a bit over a week later. The Urology Team was fantastic and comforting throughout the whole process. I had my surgery with both Dr. Seckin and Dr. Brodherson the next day. The surgery lasted longer than expected because they found a very aggressive form of Endo spreading quickly inside me. A week after the surgery, I had another appointment with Dr. Seckin where he showed us a video of my surgery being done. It was amazing to see the procedure and know what happened.

Currently, I am in recovery, and I am so so so thankful for Dr. Seckin and Dr. Brodherson for having faith that they could help me. Nobody should ever have to live with the horrible pain from Endometriosis.