I have had 2 out of 3 appointments so far and I am so tried and overwhelmed by all the opinions and pain that exams put me through.
I had gone to see a gastroenterologist about six weeks ago. He did not want to perform any tests on me until he had the operative report because he did not want to irritate my bowel endo or end up in an unsafe situation. Unfortunately, I forgot my records (stupid side effects) and so my appointment was somewhat pointless. He did tell me that I am less tender on my new pain medicines so I guess that is a plus, although a small one.
Yesterday, I had an appointment with a surgeon (endo specialist and oncologist) who gave me a few options and spent around two hours with me. He did a full exam and sonogram that caused a lot of pain and bleeding, but he was able to listen to my story. My hair loss is most likely a side effect of the Mirena IUD. He did not seem to have any other answer to that. He also discussed the possibility of Lupron and Mirena or birth control pills and Mirena rather than just one type of hormone treatment because of the pain I am still having with the Mirena daily and with my period. He talked to me about lifestyle modifications (which I am already doing) and discussed the pros and cons to conservative treatment before surgery and the symptoms that could be causing my pain as possibly scar tissue, more endometriosis, adhesions, or something else (based on my chest pain and cough and rib to hip pain when I have my period on Mirena). In terms of surgery he explained that he uses both excision and vaporization to destroy as much endo as possible but also spare the organs involved if he could. He stated that he does go into the bowel if necessary, but surgery is the last resort for him as it is with many other doctors.
The doctor also ran a genetic test based on my saliva. I had not heard of this test and am still attempting to research it. However, he explained that there is a gene that would tell him if I respond to hormone treatments or not. Based off of that test, I have a few weeks to speak with my family and others about the treatment options that he offered me. I do not plan on starting another hormone therapy until I am aware of if my body will respond to it (there are just too many side effects and I am also planning on waiting until I hear back from the CEC and get their opinions).
While I am nervous about the possibility of Lupron (which I always said I would reject as an option) and the possibility that I may not be responding to hormone treatments have me scared and overwhelmed as I know most of the "treatments" to try and control endometriosis growth. I am lucky to have an amazing support system of family and friends and endosisters that are also trying to help me with these decisions. It is so hard always going to the doctor and coming out discouraged or with bad news. I also worry that treatments I agree to or reject in some cases will cause more harm than good. I just hope that I am making the right decisions.
On a good note, the surgeon yesterday took pictures of the front and the back of the Knock Out Endo t-shirt to email to his colleagues and his patients to help the fundraiser! (that was awesome)
Feel strong everyone! Thankfully I have this weekend off from work because all this poking and prodding all week has definitely helped to add to a higher pain level :-/