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

Image via Wikipedia

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!!!

Time to Call it… September 8, 2011

Image by Badly Drawn Dad via Flickr

There comes a point in time where you just have to “call it.” You know what I’m talking about and you see it all the time on all those doctor shows: the patient has flatlined and the doctors are working feverishly to revive the patient; but, you get to a point where you know the patient isn’t going to recover and you’ve got to call it. Well, that’s how I feel about my last laparoscopy. FAIL

The failure of my surgery has nothing to do with the treatment I received; it has to do with the fact that my body hates me!

I have been wondering if it was a mistake to have this last surgery. But, I have realized that we learned some very valuable information which we would not have been able to otherwise ascertain: no active endo lesions (I have not yet received the pathology reports from surgery, but I don’t expect this to change)! Yay for no Endo! Nay for Adhesions! At least we know what the problem is that we’re dealing with! I’m so grateful for this info. Lupron had been offered to me as a treatment option (along with birth control pills, etc.), and I turned it down due to the terrible weight gain and side effects. Going on Lupron again would have only made me fatter and crazier and would not have treated my adhesion problem. Thank God for learning what we did!

I feel almost embarrassed to go to my post-op appointment next week and tell the doctor that it didn’t work. Why? I think it’s because I had approached this surgeon believing the surgery would help and I guess I feel stupid now. It’s silly to feel this way. I’m waiting until Tuesday to make my next move, but it’s off to the pain clinic I go.

And let me tell you about my therapist while I’m on the subject of the pain clinic. I would think that a therapist (whom I’ve been going to for years for my anxiety issue) would be supportive of my next steps. She basically told me that pain clinics only prescribe pills and I’m going to end up addicted. Really? This is what you tell an anxious person??? And not only that, you have essentially shot down all hope that I have of living a normal life. There are NO other options available to me. What am I supposed to do? I thought it was total B.S. I’m not going to have a pain addiction because I am refusing to go the pain med route. Duh – how do I get addicted if I won’t take them?!?! I don’t wish this problem on anyone, but I’d seriously like to see how she’d feel if she was in my shoes and someone told her that. Some people!