Alright! Life update here for you all!
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It has been almost three months now since I stopped my previous treatment and 9 months since my surgery. Wow a lot has happened this year… Any ways! My bones have had some time to rebuild, my immune system is finally on the rise and what does that mean?!? A new treatment…. YAY!… *roles eyes* For the last three months all I have been on is a progesterone pill to help prevent my cycle. So now it is time for something a bit more… serious again. Fingers crossed it should not be as bad as all that I was on before.
The medication I will be starting is a GNRH-agonist meaning it binds to estrogen receptors preventing the body from creating more. It is similar to the injection I was on before but doesn’t cause quite as extreme of a physiologic effect. I will go into this more in another post. Unfortunately there were a few endometriotic lesions my surgeon was unable to completely excise. These lesions will continue to produce their own estrogen. The medication I am starting will simply lower the overall systemic estrogen levels in my body in hopes of slowing the progression and regrowth of endometriosis and preventing estrogen positive cancer cells from rearing their nasty head. All my check ups and imaging have come back NED and I would like to keep it that way.
I am still struggling with a few issues though. My back pain attempts to pop back up every now and then. Luckily no where near the level of pain I experienced pre-surgery. I have discussed a future surgery with my surgeon. Bowl recessions and excision of endometriosis implants in my lumbar nerves may be needed. Also, I have been having tearing pains on the right side of my lower abdomen. During abdominal palpation my internal structures “do not glide like they are suppose to” (my Dr.’s words). He told me it is called a partial frozen pelvis. What does that mean? Well basically in a healthy person organs are supposed to move around and glide freely. In my pelvis, endometriosis and surgery caused a lot of trauma around my right ovary. This trauma initiated my body to lay down fibrous adhesions making my origins on my right side immobile. Like they are frozen in a block of ice. Most the time it just feels like pressure. But sometimes when I bend over and then stand up too quickly they can tear causing shooting pain. This is another reason I am gonna wait as long as possible before surgery #2. I don’t want any more adhesions. And lastly I have been struggling with crazy fatigue and joint pain.
The previous medications I was on can exacerbate joint pain and fatigue. With the meds I was on, along with my elevated MPV and WBC in my blood work, and the fact I struggled with joint pain since I was young in my knees and hips my Dr. wants me to rule out any autoimmune diseases. As we talked about before autoimmune diseases and endometriosis tend to come hand in hand and I also have a family history of autoimmune disorders. So tomorrow I will be waking up bright and early to join half of northern VA as I commute towards DC. I will be seeing a rheumatologist and autoimmune specialist. I have been gathering all my records to present to the poor unsuspecting Dr. who is likely unready for the book that is my medical history over the last year.
My friend and I were joking on the phone tonight about how I am supposed to summerize my medical history to a new Dr…. Me “So basically I have always had knee pain but then I had really bad back pain, the Dr. told me he couldn’t help the back pain and to go on anxiety meds, then it turned out all my organs were adhered together and covered by endometriosis. And oh, by the way some of those cells had undergone carcinogenic mutations.” My friend pretending to be me “Is that enough? cause if not I can tell you about my heart surgery too.” Poor lady is gonna just want to stand up and leave the room!
I dislike seeing new physicians. In my experience so many just blow you off and don’t want to look any further into complex cases. It is so hard to stumbleupon good ones so here is to hoping this one will be a good egg! Hope you all are having a wonderful and pain free night! I will update you about my Dr. appt later!