by Alexandra Bakkum
For me, it is a tad complicated. I was not “recommended” for surgery until I had over five internal ultrasounds (which were very painful) and failed every medication they could think of. Only then did I get my first diagnostic surgery in 2018.
Then, I had a traumatic brain injury and almost died, so my second surgery was pushed off until I could pass all these different psychological and neurological baseline tests. Then, after the procedure, they said like ‘oh, it was very rampant in your body, but it was a very successful surgery’, which turned out to be LIES.
Then, I was put on Lupron, but it eventually stopped working, so I was put on Orilissa. Then THAT stopped working, so I was put on Lupron again. Again, that stopped working, so I was put back on Orilissa. Lo and behold, that didn’t work, so I went back to Lupron - and I’m waiting for my third surgery, which was scheduled for October 2020, but was delayed due to Covid - I am still waiting.
That being said, I understand Covid has sent hospitals into overdrive and they’re running on nothing - though I want my surgery!! I love the surgeon I have scheduled now and his nurses so far! He is a specialist in the field and was the only one to tell me that basically all of my surgeries up until this point have just been exploratory and not helpful for any of my pain… It’s amazing to have a surgeon who GETS IT! Though my journey isn’t over.
Other endometriosis-related upsets that I have encountered include horrible side effects from the medication, such as an irregular pulse and unpredictable dizzy spells, so I have been seeing cardiologists and a neurologist to try to understand that.
I am also being denied medical insurance right now because I have that impending surgery.
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