trust

My therapist asked me how I felt about having a diagnosis.  The diagnosis being Ehlers-Danlos Type III, a clinical diagnosis made by a genetic medicine specialist.  Blood work for EDS IV is pending.

Although the list of symptoms/presentation reads like a list of shit that’s wrong with me, I find that I distrust the diagnosis.  Some of this is because I know it will be questioned by many, many doctors, as all clinical diagnoses are.  “Well, how do you KNOW you had Lyme Disease?  I see your blood work here and it didn’t meet the criteria…”  For that one, I don’t bother arguing with them about how they seem to be thinking of surveillance criteria, which the CDC states are specifically “not intended to be used in clinical diagnosis” (or sole basis for diagnosis).  I just show them the EM rash picture and they say “Oh” and shut the hell up.  EDS Type III does not have a reliable test.  It’s “picture” is a mosaic of mostly “subjective” symptoms.  I.e., it is readily invalidated by any doctor choosing to do so.  And they do choose to do so with great frequency.  I consider much of that to be the result of a misapplication of the scientific method by people who are either inherently intellectually lazy or whose intellectual curiosity and excursions have been effectively beaten out of them by years of social reward for unquestioning conformity to authority and punishment for independent thinking (too often seen as feckless, unreimbursable meandering in the context of our education and health care systems).  Oh also there is sort of a tendency towards pissing matches among competitive people and my own experience working with, living with, and married to health care providers suggests that competitive types are over-represented in medicine.  It’s hard to make it through pre-med, med school, and residency if you do not have a strong competitive streak.

So all that said, while it is nice to have a name for that illness…the next time I have to fill out health care accommodation forms, for example, I will have a succinct and rather all encompassing diagnosis…I find I am less than enthusiastic about disclosing this diagnosis to other health care providers.  Like my GYN surgeon, for example.

I mention him because I am about to be cut up.  Well, rather cut into.  Now, I believe that more imaging would have been a good idea.  Perhaps a urology or general surgery consult.  But my providers are of the mind that if it’s not something that the morons who read my CT in the ER saw, then it’s not imageable (really I just can’t trust radiologists who read the CT of a woman who’s had a hysterectomy and bilateral salpingectomy as “the uterus and both adnexal regions are normal…”) and that if GI doesn’t want it, then I should follow up with the GYN surgeons.  And the GYN surgeons, being surgeons, are just like “hey, well it might be adhesions.  We can cut into you and look.”  Because an exploratory lap is not a big deal for them.  It’s like a walk in the park.

Initially, they offered next week and the very end of May.  I took the very end of May because at the time of the consult appointment, I was not in pain and had not had it in a few days.  I tend to have a ridiculously optimistic outlook on this shit, despite all my apparent cynicism.  No pain for four days?  Well then clearly it has resolved!  Stupid me, it came back on Wednesday night.  A little gnawing pain, oh maybe it will go away.  I’ll take half a pain pill.  Then a few hours later another half because it’s back.  Then the next morning, I wake up pain free and think “woo hoo!” only to shower for work, go to empty my bladder and have lancing LRQ pain that felt like I had been run through with a serrated knife.  Ok.  So take half a pain pill.  Nope, pain still there.  Take the other half.  Pain still there and escalating.  Call in to work, take another pain pill, squash myself up on the couch in a cushion cocoon, cry a little bit, talk to my husband who is concerned and stressed about moving, surgery, timing, etc.  And then call GYN surg back, still crying and say “Um, I’m really sorry to have to ask but do you think you can still do next week?  If I wait until the end of May, I’m going to end up using all my leave time from this pain.”

And so pre-op appointment today, surgery Monday, EDS-III possibly making recovery longer than the one the surgeon is going to recommend (they seem to assume all women will be back running marathons and horseback riding in one week after a lap).  I have more forms to fill out, little time to do it, and a surgeon to convince of the need for at least three weeks recovery.

While I have the optimism I spoke of earlier, paradoxically, I have a tendency to distrust that people will do the “right” thing when it comes to making my life more or less crappy.  I need to get over that.  Ultimately it’s about not wanting to have to push when I feel like the wrong thing is being done, or the right thing is not being done.  It’s about not wanting to be seen as pushy because pushy people are a pain in the ass and pain in the ass people are bad patients who invite invalidation, disregard, and maltreatment.  But not pushing gets you left in the dirt too.  So as always, I struggle to find a balance.

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15 Comments

  1. Have they even done a pelvic ultrasound (TV)? CT is useless for pelvic detail. An exploratory lap seems hasty! I don’t want you to have complications of surgery. But you know best.

    Reply
  2. I think I actually was replying to both comments in my last one. They have done a TV and whatever the other one (transdermal? You know, the one that is NOT inside you) ultrasound. Said it all looked ok. The reason for the urgency is the pain. It is completely debilitating when it comes, and it keeps coming. At this rate, I will use up all my leave time before they can figure it out, and all docs keep pointing me at the gyn surg to look into this, which means, I reason, I can go through months of pain and missed work (we’re talking serious missed work here, not a day here and there) then end up with a lap…or just cut to the end and do the damned lap now. :(.

    Reading that over and the tone seems cranky. I’m not, or at least not irritated by questions. I am just seriously bummed out and exhausted. I feel like I’m living in a war zone, like my body is a terrorist who has made it its job to destroy everything that is good about my life.

    So, bright side: Let’s hope it’s adhesions.

    Reply
    • Makes sense. Thanks for explaining! Good luck and yes I hope for an easy fix for you. Hang in there! You can DO IT!

      p.s. the other one’s usually TA/transabdominal…at least in Canada 😉

      Reply
  3. Oh wow! Won’t the genetic test be evidence enough to hold onto your diagnosis? Or am I misreading? Hopefully if you can just stick with the diagnosing clinic, they won’t try to take it away from you. (The psychotic allergist I saw, never challenged the asthma diagnosis when I saw her in the clinic that had established it, but when I saw her someplace else, she went batsh*t insane on me. Moral? I don’t know, because staying in the diagnosing system hasn’t helped me with the adrenal stuff at all, but there has to be a meaning in there somewhere.)

    Good luck with the surgery, I hope they find something that is easily fixed.

    M

    Reply
    • Unfortunately, EDS type 3 is a clinical diagnosis. At least according to the doc, there isn’t a good genetic test for it yet. Type 4 has a test, they did that one. Don’t know what the results are yet though, I have follow up appointment in June.

      Psychotic allergist sounds like a winner.

      Thanks for the good wishes, I’m a little stressed, worried I’m not doing the right thing but I know that this pain is different and I have to listen to my body here.

      Reply
      • Agreed EDS 3 is clinical Dx. Which, I agree dys, makes it seem like it could be a mixed bag rather than one specific condition. Basically I take it as lax ligaments, worse wound healing, increased risk of perforation/laceration/bleeding with procedures, sometimes receding gums, joints that give out or dislocate, increased risk of allergies, poor circulation with blood pooling in legs, easy bruising etc. Each may have some or all of this to varying degrees. EDS IV much worse as I’m sure you know. Aka “vascular EDS” high risk of vascular complications.

        I so hear ya on not knowing what to do, but you know your body best and what you’ve been through and what you feel safe with and what you can tolerate. The rest is out of your control. Which, sucks. Before I get an intervention I make sure that I’ve maxed out all other options or am in a state that I can’t go in without it—-which sounds like you–to justify the risk to myself. But, even then, when things go wrong I have major regrets and can’t let it go. Hope you are doing ok.

  4. queenofoptimism

     /  May 12, 2012

    ” I have a tendency to distrust that people will do the “right” thing when it comes to making my life more or less crappy.  I need to get over that.  Ultimately it’s about not wanting to have to push when I feel like the wrong thing is being done,”. I need to get over all,of this too, Support group?.

    Reply
  5. Jandroid

     /  May 27, 2012

    Don’t know if this will shed any light on your pain, but I’ve excerpted it from an EDS/HMS “summary” by Dr. Alan Pocinki of George Washington University re: IBS pain/gut pain:

    “Tears of the abdominal wall muscles are another very common problem among people with hypermobility. The muscles themselves do not tear, rather the fibers connecting different muscles do, creating a gap between two muscles. Small segments of intestine can occasionally push up through these gaps, causing pain. As pressure backs up behind this “stuck” segment, pain gets worse and is felt in a larger area, but eventually resolves when the intestine
    that has pushed up into the layer of muscle falls back into place. The timing of the pain is quite random, depending only on the movement of bowel contents and the contractions of the intestines. The lack of any correlation to meals or bowel movements is one clue to the cause of the pain.

    Unfortunately, these abdominal wall tears usually will not be found on a cursory physical exam, nor on x-rays, CT scans, or sonograms, and most physicians think they are rare and so do not look for them. Depending on where the tears are located, patients may be incorrectly diagnosed with reflux, ulcer, gallstones, ovarian cysts, diverticulitis, and most often, irritable bowel syndrome. Once patients understand the source of the pain, most can tolerate it, or find ways, such as changing position, to relieve it. Surgical repair is rarely necessary, except when true hernias occur, i.e. when intestine pushes through the abdominal wall muscles and stays there. The most important reasons to make this diagnosis are to prevent unnecessary testing and treatments for other incorrect diagnoses, and to reassure patients that they don’t have something terribly wrong that hasn’t shown up in the tests they’ve already had. ”

    Yeah life with EDS sux. We get to have so many “known unknowns” and “unknown unknowns” thanks to being 80% collagen. Good luck,

    Jandroid

    Reply
  6. Jandroid

     /  May 27, 2012

    Yay, I found a link to the document I quoted from before finally (someone had emailed it to me, so didn’t know where to find it on the intertubes yet, so excerpted it for you before). I think it’s an excellent comprehensive description of Ehlers-Danlos Type III (or any type) and hypermobility, in case it helps:

    http://www.ednf.org/images/2011conference/Handouts/Pocinki_HYPERMOBILITY4.pdf

    Reply
    • Wow, thank you for the link Jandroid! Interestingly, steroids do tend to calm my gut, although inflammation markers never come back significant. I wonder if something like this responds to steroids and might be a good explanation for what is going on. I have a feeling my GI doctor isn’t going to be open to any systemic explanation for my continuing bad GI symptoms (she’s very by the book) – actually, most of my GI doctors have been like this. 😦 There’s a doctor-blogger out there who refers to specialists as “partialists” and it’s behavior like this that makes me agree the term is fully appropriate.

      Reply
      • Jandroid

         /  May 30, 2012

        “If all you have is a hammer, everything is a nail”. Of course that’s how they are, because of their super focused training giving them a limited “view” of your body. They will struggle to think outside of their specialty “box”. And they feel obligated to give us some kind of answer even if they don’t’ really know one for sure when we go to them with such a complaint, since that’s why we’ve come after all – we’re seeking answers. They’re also afraid to fail to uncover something serious lest we sue for malpractice later. So we have to help them think outside of the box, and that article I gave can help. (Dr. Pocinki just spoke at last year’s EDS conference). See this link for more great handouts from some of the world’s leading EDS specialists:

        http://www.ednf.org/index.php?option=com_content&task=view&id=2052&Itemid=88889219

        (If that doesn’t work, just type in “handouts” in the search box at ednf.org).

        I would frankly avoid most “specialists” for this reason, but alas, most EDS /HMS patients (and their doctors) don’t realize what is going on that is causing so many disparate symptoms *in time* to do so (avoid the “-ologists”). (One friend just had her feet flattened by a podiatrist because they didn’t realize how hypermobile she was – and now has major problems from it she didn’t have *before* they ‘fixed” her~ no joke! We are super *plastic* and have to be really careful.) But most doctors will respond to fact based evidence if presented in a calm and intellectual manner, I’ve found. (It’s not the message, it’s the “delivery”). So I made up a spreadsheet of every symptom no matter how seemingly benign or disparate (e.g. myopia, IBS, anxiety, depression, fallen arches, rosacea, bird hand sign, hemorrhoids – I ended up with over 45 wide ranging symptoms) that I ever read about being related to EDS/HMS anywhere (I read 3 books plus numerous websites and discussion boards) and then checked off all of them when they occurred for anyone in my affected family. (VERY revealing, and allowed my geneticist to diagnose me in 5 minutes after a physical exam in Feb when I had a massive “storm” that left me wheelchair bound for a month. Now I know why I’ve had IBS, chronic fatigue, subclinical fibromyalgia and unexplained joint pain all my life!) You’ll be surprised (or not) at how many body systems are affected by EDS/HMS and how. (We are 80% collagen after all as mentioned). And things like dysautonomia (which brings its own host of seemingly unrelated symptoms from widely swinging BP to poor temp regulation to vomiting) are brought on by a variety of causes accordingly, including blood pooling in overly stretchy veins (causing BP drops on standing) and sometimes our odontoid formations (bones) in our cervical spine impinging on our brain stems due to having weak cervical ligaments from this, among other things (like swollen jugular veins pressing on your vagus nerve). There’s a lot of overlap with Chiari 1 malformation and related issues. (I watch my head and neck position all the time now, and it is helping ease my CSF headaches.) See http://medicalzebras.com for more on that as well as http://prettyill.com and http://hypermobility.org for more. You are welcome to ping me at jandroi d [at] gm ail [dot] com for a copy of the spreadsheet. (Remove the spaces, of course, just dodging spam bots here.) And good luck with your specialists. I hope you can avoid any unnecessary surgery, but you should definitely discuss that with them to decide. But ultimately, it’s our bodies, and up to us – not them. Don’t give them too much power (smile). No one should.

  7. Saved as a favorite, I like your site!

    Reply
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