“There’s no race, there’s only a runner
Just keep one foot in front of the other
There’s no race there’s only a runner
1, 2, 3 even when you get tired
Just keep one foot in front of the other
There’s no race, no ending in sight
No second too short, no window too tight”

By Lucius from ” The Two of Us on The Run”

I’ve wanted to write for a while since my surgery, but I wanted to wait until I had only good news to report. Well, real life apparently does not work that way and I have to take the good along with the bad. Leah and I drove to Orlando, FL on 07/30/2018 in preparation for my surgery with Dr. C on 08/01/2018. We arrived safely and we were smitten with the Airbnb that I had booked for the 9 days we were there. I felt proud that all of my obsessing and research paid off! Although the circumstances were not ideal for a “vacation,” we ended up spending some much-needed quality time together and had a really good time all things considered. My biggest fear going into surgery was that I would wake up after surgery and be told that they could not find anything wrong with me. To my surprise, it was quite the opposite.

After my surgery, while I was recovering in the post op area, Dr. C pulled Leah into a room to discuss her findings and to let her know how surgery went. Leah was pretty anxious because the surgery went longer than expected (and well, because she was just worried about me having surgery in general). Dr. C told Leah that the surgery went well, but “Your wife must have been in a lot of pain for a long time. That was a lot to find. I was not expecting to find all of that.” She went on to explain to Leah that she has diagnosed me with stage 4 (out of 4 stages) Endometriosis. I had lesions all over my pelvic cavity including my large intestine, Sigmoid, the posterior cul-de-sac region, my uterosacral ligaments and that my left ovary was encased (meaning that the adhesions had it stuck to my abdominal wall). The good news is that a colorectal surgeon was available and able to come into surgery to assist Dr. C since we had not anticipated that my bowel would be affected that much. She is also pretty confident that she excised all of the endometriosis and the biopsies revealed that I am cancer free (yay!).

The difficult news to digest is that endo is a chronic condition that I will most likely deal with the rest of my life. I am having to change my diet to eating antioxidant and anti inflammatory foods, using organic and natural products (household, beauty etc.), be on birth control indefinitely (according to her school of thought, the jury is out and lots of conflicting information about this) and keep a close eye on my symptoms. Dr. C wanted me to try this new “wonder” drug called Orlissa, but I told her I had a lot of reservations because of what I read in regards to how it affects mental health (and it has not been proven to be more effective than birth control at this point and excision has been the only method proven to be effective in treating endo blah blah blah) AND it costs $3,000.00 a month. She was very understanding and did not push me to try to take it anyways, which I really appreciate. It’s really nice to feel like I have a say in my medical care and that the doctor respects that.

I am very grateful to Dr. C and am overall happy that I went with her. She is so knowledgeable, kind, and confident in her skills. After meeting her, Leah also fell in love and understood why I felt like I was in capable hands. The surgery went as well as I could have anticipated, I did not get nauseated and my pain was very manageable. I was mostly sore and very tired. After surgery I felt like I could definitely tell a difference in the endo pain lessening and that my body felt different. One example is that for the entire month of July I was craving lemon lime Gatorade like crazy. It’s all I wanted to drink- my regular decaf coffee made me nauseous just thinking about drinking it. It was like my body was missing some nutrients. Immediately after surgery, I no longer wanted Gatorade and the craving was completely gone.

I went back to work 10 days post op and did mostly fine besides fatigue and getting sore from using my abs to sit for extended periods of time. Two and a half weeks post op I unexpectedly got my period (I am on continuous birth control and should only have three a year) and that is when the excruciating pain began. I had read that the first menstrual after excision is supposed to be pretty brutal and it was especially since it was so soon after surgery. This pain was worse than any I had prior to surgery and I was in a really bad way until I received a prescription from my doctor. I had to call three days in a row in order to get something called in- which I am not used to doing. It was very difficult to keep calling and advocate for myself. When I have to do things like repeatedly call an office, I feel like I am being a giant pain in the ass and I don’t want to inconvenience people.

I am still pretty tired and a lot of the pain has gone away, but I am still having lower back, hip and butt pain which is disappointing. I have done a lot of research and learned that surgery is not a quick fix all and that since I have been in chronic pain for years, it could take some time and other interventions (physical therapy etc.) in order to get all the pain to dissipate. I also really wanted to write this post with the news that I have been able to wear regular pants with a waistband, but that is not the case yet (due to pain with pressure and bloating). I am still sporting leggings and Stevie Nicks flowy tops and will be for the time being!

It’s been hard to keep my head up lately. I don’t know if the fatigue, chronic pain, or birth control is the contributing factor or a combo of all three, but I have been struggling with some depression, crying spells, and insomnia. I am trying to remember that this did not start all at once, therefore it’s not going to end all at once. My strategy the past couple of weeks if just to keep my head down and one foot in front of the other. I am trying to make sure I get adequate rest without isolating myself and making sure I stick to healthy foods that will decrease the inflammation in my body, along with some exercise.

I am super glad I did not go with the two surgeons I consulted with in Atlanta. The first one would have given me a hysterectomy and not have been able to address the endo that was all over my insides. That would have done nothing to ease my pain and left untreated I could have ended up with a colostomy bag. The second doctor did not really seem to have the knowledge or expertise to deal with endometriosis of the bowels and told me he did not think I had endometriosis at all based on my symptoms and his exam (boy was he wrong!). I feel like all my hard work and research has paid off and I now have a team that I can work with and that will support me through this disease.

https://www.drseckin.com/endometriosis