Just another Gal with Endometriosis

At a Loss on My Next Step(s) September 13, 2011

Filed under: Adhesions,Endo,Medical Mysteries — EndoGal @ 1:31 PM
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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!!!


2 Responses to “At a Loss on My Next Step(s)”

  1. spicyt Says:

    So sorry you’re going thru all that. Of course I know all about endo and adhesions and in my case it IS massive adhesions that are pulling and constricting my insides so badly I am in pain continuously. It’s wonderful you have access to such a wonderful hospital! I am wanting to go to Mayo or Hopkins or somewhere…anywhere there is a doc with a brain that can deal with something as complicated as adhesions and humongo hernias that cannot be operated on like mine…i’m so sick of pills…and sick of doctors patting me on the shoulder saying they understand the pain I am in but that they know of no way to fix it…other than complete intestine removal and ostomy…I’m not ready for that yet…anyway…you know I’m around if you need to vent! I’ve not been real active lately…been in a funk…still am, but just peekin my head out of my hole a bit…lol. Take care Hun.

    • EndoGal Says:

      Thanks Hun! I’ve been reading your posts and am hoping you get out of your funk! I saw you had a better day and that made me happy for you!

      As for me, I just don’t know if anyone really cares enough to try to help me figure out what’s going on. Doctors are just too busy and have too many patients to really take the time to sit and figure out what my problem might be. I was just telling my hubby that they’re probably going to blow me off with “pelvic pain” and leave it at that. And by then, I’ll be so darn frustrated, that I won’t even want to pursue it anymore. I’m trying to stay positive, but it’s getting harder with each doctor’s appointment. Thanks for your kind words! So great to know I’m not alone in this long journey!

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