With my laparoscopic diagnosis of Stage III endometriosis, complete with bowel adhesions and a chocolate cyst on my left ovary, I was really throwing myself a pity party. Endometriosis is not fatal (in most cases), but it is extremely inconvenient! While I was relieved to finally receive a solid diagnosis after almost a decade of painful periods, stomach issues, and heavy bleeding, I was still sad about my road ahead. Leaving my post-op appointment where I received all of this information, I decided to start looking up things about endometriosis on Google and Pinterest. There were diets, supplements, oils, and lifestyles all dedicated to living “symptom free” of endo. While I did look up some of these and use them, what struck my eye is this one particular book that kept coming up.

“The Doctor Will See You Now” by Tamer Seckin kept catching my eye, so finally I hopped on Amazon and ordered it with a one day delivery. I started reading it the next day as soon as it was delivered, and I believe in 48 hours I had read it cover to cover. Now, for those of you that may not know the book, Seckin goes through common symptoms, typical misdiagnoses, and the importance of going to a doctor that will really LISTEN to you. He explains in the book many of the treatments for endometriosis, including hormone therapy and ablation, but also explains that expert excision of endometriosis is the gold standard treatment.

With this information and some questions in hand, I went back to see my regular OBGYN, who also performs minimally invasive surgery. I wanted to discuss treatment options. She had explained to me that she performs ablation and because of the stage of endo and the cyst on my ovary, that she would have to take out my left ovary, left tube, possibly part of my uterus, and some of my bowel. She assured me that there would be a colorectal surgeon in the operating room with her who has performed this surgery before. After reading the book, I had many questions. “Should I/Can I freeze the eggs in my left ovary?” She basically shrugged it off and said, “You’re young and you have plenty in your right one to conceive.” Then I asked about ablation vs. excision, to which she laughed and said, “Every doctor has their own special tools that they use.” I was so disappointed, I had been going to this doctor for over a decade, and this was the first time I felt like I was not being properly cared for. I told her with utmost respect that I was getting a second opinion and would be in touch.

Then I found a specialist in New York, only 3 hours away from my home! I start getting in touch with the office to schedule an appointment. I went to visit him, and wanted to schedule surgery with him, but his office staff were a little unorganized and did not reach out to schedule surgery. When I reached out to them, they told me I had to schedule another consultation because it had been months since the doctor had seen me. Also, with a change in career and health benefits, ultimately I would not be able to do surgery with him. It wasn’t an easy decision to come by, but it was a necessary one for our financial security and my peace of mind that I was going to receive phenomenal care.

Then I found the perfect solution! I found an endometriosis specialist right in my home state! I was so excited! I set up an appointment and started right away on the paperwork. Many of the forms I had to fill out had to do with fertility issues, but I answered all of the questions to the best of my ability. When we went in, the office staff were very nice and so was the doctor. Most of the appointment was answering questions and listening to the doctor talk about her research and work with pelvic pain and infertility patients. She suggested the Whole 30 diet for my husband and me to be started ASAP, and then explained that I would need to do Lupron injections to suppress the endo before surgery. (I have a lot to say about Lupron, but that is for another entry.) I told her I really didn’t want to do Lupron, but she didn’t seem like she was going to change her mind on that. After meeting with the doctor, we met with the billing coordinator, who spoke to us ONLY about reproductive medicine and how that billing works. Then we talked to a nurse who explained that we were going to do a ton of fertility testing- I’m talking semen specimen, panels of bloodwork, and taking prenatal vitamins. My husband looked at me at some point and said, “Are we here yet? Are we really at this point that we need to be talking about this?” I shrugged my shoulders, and we left with our heads hanging a little low because it was pretty obvious that we weren’t going to have surgery with this doctor either. She is an AMAZING reproductive doctor, but that does not mean she specializes in endometriosis.

My husband and I were at a crossroads. We felt like we didn’t have many local options, and didn’t even know where to begin to look elsewhere. I started doing general searches on surgeons in surrounding states. Every time I found something, I would do a search on the ratings to see if it was a good doctor, office, or hospital. The one thing I kept noticing in the written reviews was the mention of a “Nancy’s nook list”. I had NO idea what that meant. So I finally did a search on Nancy’s Nook. What I found definitely changed my life. Nancy’s Nook is a group on Facebook dedicated to self-education, research, and self-advocacy for patients or family of patients suffering with endometriosis. There are questions that have to be answered before you join, and the most important rule is that you cannot post in the first week, you must READ and use the search feature on Facebook to find what you are looking for.

You see, there’s a happy ending to my story. After joining this group, I found the doctor that was going to save my life. As stated before, endo is not fatal in most cases, but it is extremely inconvenient. I found the surgeon that was going to take that inconvenience, frustration, and pain away from me. I cried after making the appointment for surgery with him. I just knew I was going to have a better quality of life after surgery with him! Stay tuned next week for me to tell you about this miracle worker who was the answer to so many prayers!