“the stars began to burn

through the sheets of clouds,

and there was a new voice

which you slowly

recognized as your own”

― Mary Oliver

A lot has happened since I posted about my chronic pain in the blog post, “The Journey” in May. I wrote about my appointment with a surgeon who I was scheduled to have surgery with this month, but after that appointment I did a lot of research and listened to the nagging feeling that he was not the right doctor for me. My gut is 99.9% on point and when I don’t listen to that feeling I usually am disappointed and end up paying for it.  I am very glad I followed my gut this time because the route he wanted to go conflicts with a lot of the research on Endometriosis and would probably have lead to me needing to have multiple surgeries. Since February, I have spent countless hours learning as much I can about endometriosis in order to squelch my anxiety and to make me feel like I am doing something about my pain while I am just waiting. An acquaintance had a really bad experience with the surgeon I saw in April and had to go to another surgeon in order to fix the damage he did and address her symptoms.  She gave me the info of the surgeon that she credited with “saving her life” and I made an appointment with him towards mid May.

I was really hopeful that this doctor was going to be “the one” since he is in network with my insurance and located in Atlanta.  He was a lot more knowledgeable about endo than the other doctors I had seen, but still gave me conflicting information from what I had researched (through very reputable sources).  He told me that even if he did surgery, the endo would come back within two years and I would need another surgery at that time. In my research, I found that if a physician properly excises the endometriosis and removes any other areas affected there is a 10% chance of the endometriosis coming back.  I asked him to do bloodwork since I had not had any done in almost a year. He dismissed me and asked me, “what type of blood work should I order?” I wanted to tell him that he was the one who went to medical school and that a quick Google search would give him the answers, but I held my tongue. He also indicated that he did not think I had endometriosis and wanted to try me on a birth control pill for the next several months to see if that helps (since I had only previously tried an IUD).  Through my research I had learned that birth control does not necessarily stop the progression of endometriosis, but it masks the symptoms. I tried to explain to him that I was very worried about taking anything that might cause depression and mess with my mental health, as this is a delicate balance that I don’t want to mess with. He put me on Yaz and told me I could stop it if I had any mental health issues. I left that appointment trying to hold back tears and sobbed the entire car ride back to work.  I was disappointed that the appointment did not go as I had hoped and I felt slightly humiliated from yet another examination and having to explain everything that is happening with my body. I had hoped to feel like I was on the right track and that I was in good hands, but that nagging feeling in my stomach was still there.

After doing more research I decided to see my primary care physician to update her on the situation and to also have blood work done.  She was wonderful
(thank god!) and my blood work showed that my c-reactive protein level has increased and is high (this only indicates that there is inflammation somewhere in the my body and leaves me susceptible to a whole list of issues in the future if it remains high) and that my vitamin B12 and D levels were really low.  I started on some more supplements to address the vitamin levels and decided that I would pursue trying to get an MRI of my pelvis. Research and many case studies have demonstrated that endometriosis does not always show up on an MRI, but my thoughts were that at least we would know if something was visible or not.  I contacted the second surgeon, who put me on the birth control to see if he could order an MRI. Initially he did not want to, stating that it might be a high out of pocket expense to me. I let him know that I knew my benefits and that it would be covered because we had met our deductible and out of network deductible.  After I advocated for myself, he ordered the MRI. When I went to have the MRI done I got really faint, pale, and sweaty because the nurse dug into my veins to put in the IV. She acted like this had never happened before and that I must have done something to make myself react this way. A couple days later I was told that the radiologist read the results and that the only thing seen were benign cysts on my liver.

It’s been two months since I started Yaz and I absolutely hate it.  Since I started it I have way less energy, muscle weakness in my legs, worsening asthma, constant spotting, hot flashes, increased sweating, chills, pain in my hands and more visible veins. I joined this group on Facebook that is absolutely amazing and is run by a nurse who also has endometriosis.  That page has so much valuable information and research- along with a list of doctors worldwide who are trained and knowledgeable about endometriosis and have had countless excellent patient outcomes. From this list, I was able to find a group in Atlanta (who is out of network with all insurance, therefore very $$$) and several doctors in Florida.  I went to our insurance website and looked up any doctors that I think were feasible for me to travel to and to see if they took BCBS. I found a list of three doctors in Florida who were in network with BCBS. It just so happened that I was going to Daytona Beach in July to meet up with my family, so my hope was that one of the doctors in Orlando would be able to see me for an appointment that week.  All the stars aligned and I saw an amazing doctor in Orlando, my first day of vacation before meeting up with my family.

First of all this doctor is hispanic (yay supporting minorities) and a woman, which really made me happy and more comfortable.  She was really warm, listened to my symptoms, validated weird things happening with my body, and indicated that she thought the MRI was incorrectly read based on her exam.  She let me know that she was going to have her radiologist review my images and also she would be calling me to set up surgery. This past Monday I got the call that my surgery is scheduled for 08/01 and that the radiology did see that my right ovary is fused to something, which could be my appendix. I might have to have my right ovary and my appendix removed along with any lesions (of endo) that she finds when she opens me up.  

A lot of things are unknown, which drives me bonkers and heightens my anxiety.  We won’t really know how my body is affected until she goes in and has a look. That means she will have  several doctors on call during my surgery in case my bowels, appendix, and other organs are affected. She did assure me I would not wake up with a colostomy bag, which I appreciate and didn’t even know was a scenario that could happen!  My recovery time is unknown because of not knowing how invasive the surgery will be. We have booked an Airbnb for a little over a week with the assumption that I will be able to get back to Atlanta then. I am trying to tell myself that the money we are spending is worth it for me not to be one of those patients with 28 surgeries and the money we are spending going to Orlando is a lot cheaper than seeing a doctor who is out of network in Atlanta.

Since my appointment in Orlando, I have been feeling progressively worse.  I don’t know if this is because I know I am close to some relief or that things are just progressing.  I have not been able to drink my decaf coffee in two weeks due to nausea in the morning. I have been craving lemon/lime Gatorade like a mad woman and as of today had some dry heaving (fun!).  My body fluctuates from having hot flashes to chills and I am utterly exhausted each day.

What I have taken from this experience is that it is important to listen to your gut, advocate for yourself (even when it’s uncomfortable), and to seek more than one opinion when having a major procedure.  I have been dismissed, told that my pain is all in my head, denied pain medication because “I should not be in this much pain,” and made to feel like this is just a normal part of womanhood. This has been a frustrating two years and has opened my eyes about the faults of our medical system and how it relates to women.  I will no longer blindly believe someone just because they have credentials after their name. Accepting help does not make me weak and that it is a necessary part of life. I know my body best and I am now able to be an advocate for myself.