I had my post-op appointment today and I feel even more confused now than I did before. I am at a complete loss on what to do next.
The results of my surgery are, as we learned a month ago: no endometriosis and some adhesions. The doctor was not surprised that I still have pain and does not believe that my pain is caused by the adhesions given their location and the fact that they were minimal. He is such a kind doctor and apologized that he was not able to help me. He recommended I either seek treatment at a pain clinic (Brigham and Women’s Hospital has one) or work with my primary care doctor to see if I have some other issue (likely gastrointestinal) that is causing my pain. Masking the pain isn’t going to get to underlying issue, so back to the PCP we go!
I feel devastated. This news is no different than the news I received after surgery. But, I guess I had just assumed that it was the adhesions causing pain. At least we now know what we’re not dealing with.
What to do? My husband wanted to talk about next steps and I didn’t. For those of you that have been through the torture of getting your endo diagnoses, you know what a journey it was: finding someone to understand your pain (and realizing it’s not phantom pain), going from one doctor to another and from test to test. And, it’s a long journey. I just don’t want to do it! I guess I’m a little cranky right now.
My plan of action? First, I need to find a new primary care doctor. My current primary care doc is okay so long as you don’t have an actual problem. I had a terrible experience dealing with them late last year when I was having terrible headaches and sinus infections. Tracking them down to get a head CT Scan result was a nightmare. I was terrified I had something terribly wrong with me and they couldn’t even be bothered to return my phone call. So, a new PCP is in order. I want a doctor that is part of Brigham and Women’s (BWH). I want the best of the best. No shuffling for me this time around. And, since they already have all my reproductive records, they will be less inclined to bounce me back.
Just when I had caught a break with my endo, I get kicked back down again.
It’s not fair. Waahhh!!!