questionable answers

Been having a hard time getting to sleep – I get sleepy, I start to fall alseep, then I’m awake.  I’m blaming pain, for a couple of these late nights at least.  I’m thinking it’s the endo that’s the culprit at the moment.  I”m having a lot of pelvic and back pain, coming along with hip pain and pain that extends down into my leg.  It feels like I’ve got something ponderous and caustic deep in my pelvis, pulling one minute and throbbing the next.

I had been reminding myself that I am doing something that will probably help, at least some (I hope) with the endometriosis related pain.  I.e. surgery in January.  However, that plan – which already was a bit scary – became something that is less of a certainty or at least less of a reassurance after my last primary care appointment about a week ago.  I reminded my primary that I’m having a hysterectomy in January.  He looked dismayed and said “Surgery?  Oh…that’s going to make everything worse!”

That was not an expected response.  I mean, I know that given my current crappy overall (i.e. not gynecological) health is not great but I guess I figured it wasn’t something that required that level of concern.  I figured that based on how my doctors (current and past) treat it.

I explained how much pain and trouble the endo causes me, that it’s no longer just endo but also adenomyosis (he’s not up on my gynecological history), that I figure I can do this now or I can wait again until it’s invaded more areas, that the last time I had surgery for endo they found it had worked its way deep into my rectum, that it was a daily source of pain for me, that I don’t want to wait for it to involve my bladder or to get so bad I need a bowel resection.

Then we went over test results.  Yes, notice that there was not much segue there?  I did.  But that is the nature of doctor’s appointments, even lengthy ones.  Jump jump jump…what’s next?  Next?  I’d like to find a way to navigate them so they are not like that.  I suspect not being my doctor’s last appointment on a Friday would be a good start but I take those appointments so they wouldn’t interfere with work, partly because I am having surgery in January and am trying not to be that person who is ALWAYS out for medical stuff (the issue of scheduling appointments is in fact how surgery came up at my appointment).

The results included urine from early September that showed high “adrenaline by products” or something like that.  “It could just be your stress response” he said, then added “but has anyone ever worked you up for a pheochromocytoma?”  Um, no.  I spent time the days immediately after the appointment looking it up and trying to find reasons why I wouldn’t have this so I don’t have to (a) go without cigarettes and coffee for three days and then (b) do another 24 hour urine collection.  “Ah, hypertension, it says that you get hypertensive and I am definitely not hypertensive!” but then it seems you can have this and be “normotensive” or have episodes of hypertension.

We ended the appointment with discussion of my nutritional status “why are you using up so much thiamine?” he said.  He thinks outloud, I don’t think he was actually asking me to provide an explanation.  Did I feel better after the IVs in September he asked.  Not immediately, I told him, but I’m not flattened right now and I just finished one of the busiest times at work and was in the middle of a move.  If I’d done either of those in September, I wouldn’t be able to get out of bed.  So maybe it did help.  We can do more, he offered.  “Can we skip the Mg in the bag though?” I asked.  I explained that it took a long time to infuse because of  magnesium.  He responded that it shouldn’t have taken so long, I responded that it did because they couldn’t put it in faster than 300/hr since it hurt too much going in (Mg is a little caustic apparently).  We left it at he was going to check how much Mg he had ordered.  Appointment ended, orders to get more bloodwork and a caffeine and nicotine deprived 24 hour urine collection.  I left without a clear answer on the IV and what to do about my crappy vitamin levels.  I asked the nurse to please ask him about it when I was leaving and realized we hadn’t finalized this during my appointment.  It’s been over a week and I haven’t heard back.

And in the meantime, in addition to deciding I should do the 24 hour urine (then shouldn’t, then should, then shouldn’t…yeah, it’s been one of those weeks), I realized that I have no idea what our game plan is, if there is one, or really even what game we’re in.  Surgery?  Who decides if it’s ok or if it really will “make everything worse”?

So I’ll be calling.  What the hell am I going to say though?  I’ve been thinking about this for the last two days.  How am I going to NOT sound like an incoherent nuisance and instead convey what I’d like help with (coherently)?  Every time I think I have a plan, I second guess myself and I find a reason not to call.  This sucks.

Last night, after waking up to pain here pain there, I finally fell and stayed asleep.  I had violent dreams.  I dreamed that I was talking to a doctor (some random one from central casting in my brain) who was being casually but cruelly dismissive about something that was troubling me.  The conversation ended when he said something about migraines, I can’t recall exactly but it pissed me off.  I left and found myself in a hallway that reminded me of one of the basement levels at a hospital where I worked (in my dream, it was slightly less creepy).  There were a bunch of lockers nearby and I knew that they were doctors’ lockers.  I busied myself ripping things out of them, balling them up and tossing them around the basement.  It was quite cathartic.  Until security came.  I charged at security and got thrown down to the ground. Apparently my superego is still somewhat in charge.  And strong.

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  1. Texas Reader

     /  November 4, 2010

    Endometriosis – I treat mine by taking the pill continually so I never menstruate.

    Back Pain – I started having lower back pain recently and just got diagnosed with sacroiliitis, so you might want to do some research on it. Here are the basics: your spine and your pelvis are separate bones. They are held together by a huge muscle mass. On either side of the spine are narrow joints – the spaces between the spine and the pelvic bone. When you walk there is only about 2 to 3 mm of movement in those narrow joints.

    Sacroiliitis is an inflamation of those joints. It is treated by steroids and muscle relaxants for “flares” and PT to strengthen and stretch the surrounding muscles.

    My first flare started with tightness in the lower back muscles, then severe pain made worse by walking. Difficult getting into and out of bed. A 10 mg shot of the steroid Decadron, Tizanidine to relax the muscles, and 4 days of prednisone have me well on my way to getting past this thing.

  2. Hi Texas Reader! You’re very fortunately that the bcps worked for you. It’s a treatment I tried but unfortunately it didn’t work well.

    How did they diagnose your sacroilitis?

  3. queenofoptimism

     /  November 5, 2010

    Hi Dyspatient,

    I’ve been thinking of you and am glad I finally made it here to get updated.

    Having to follow up to get the real scoop on what doc meant by “making it worse”; having to make the decision about the urine test independently (no real good advice as to whether its truly worthwhile); not receiving a call back from doc;s office; and having to carefully schedule your appointments so your work doesn’t freak – all of this situations suck. I’m so sorry you have to go through them.

    I hope the pain lessens and that you receive helpful information that can create positive results.

    Sending many hugs your way. How do you like the new place??

    PS email me. I have something to tell you about fmla.

    • Thanks Q!

      Pain is getting better. Maybe it was an ovarian cyst or something. I am going to call, I wrote a little “script” of what I’m going to say. Don’t need to ask about the IV, I got a note by mail from them telling me we can wait a few months. Yes, a note by mail. I’m surprised they didn’t send it by pigeon.


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