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Thread: Time to face facts...

  1. #1

    Default Time to face facts...

    The fact that I guess I do really belong here.

    A little of my story - we've been TTC for 2 years and 3 months. It is depressing when you see it set out like that. We've been going through IVF treatment for a year now, for both male and female factor infertility.

    During this time we've had three miscarriages. One at just before 9 weeks, two at just on 4 weeks.

    It appears that I have an odd body. I have a rheumatoid arthritis condition that is still unidentified 5 years on. I'm beginning to think of it as a case of my body just goes nuts and has an extremely exaggerated response any time there's inflammation present.



    The testing I've been through doesn't really indicate much. A possible excess of NK cells. The lady I've been seeing for acupuncture and traditional chinese medicine has come to think of me as a borderline case. And the last round of testing showed exactly what she predicted - levels all within normal range, but my lupus anticoagulant tests came back only barely within the normal range.

    If it were up to my acupuncture lady, considering my past history and the way my body responds to things, I'd be on clexane as part of my IVF protocol now. Unfortunately, it's impossible to find a specialist who will consider the whole picture and agree to the clexane. Even Dr S just says that I'm within normal limits and there's no need for it. They only look at the numbers and the ranges that are declared ok.

    I'm already on prednisone to deal with the possible NK cell problem. I need it to keep my arthritis pain under control as well. My acupuncture lady is suggesting low dose aspirin for what looks to be a borderline lupus anticoagulant problem. Again, none of my specialists would agree that there's any need for me to be on aspirin (just like the clexane), but at least aspirin is something that I can obtain over the counter without a prescription.

    It's a hard decision. On one hand you want to be able to trust your specialists to make the right decisions and recommend the right treatment for you. But on the other hand, I am the one that knows my body, knows the way it responds, and the acupuncture lady is the only one that seems to think of me as an entire body system. The fertility specialists seem to only want to think of my reproductive organs, and my rheumatologist seems to only want to think of things that directly impact joint pain. Western medicine doesn't seem to want to think about borderline states and that different numbers may mean different things for different people.

    BW

  2. #2

    Join Date
    Feb 2006
    Location
    NSW Central Coast
    Posts
    5,304

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    :hugs: BW, I can see you're frustrated and can only imagine what you have been through and what you are going thruogh. Once again :hugs: .

  3. #3

    Join Date
    May 2007
    Location
    ACT
    Posts
    523

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    I know what you mean about FS not wanting to give credit to views held by other medical practitioners. When I started seeing my accupuncturist she asked which FS I was seeing. Her response was 'That's good, he's open to accupuncture and herbs, where as Dr X is totally against it".

    Our aim is to sort our bodies out and achieve that baby, so it's frustrating when we have to fight the doctors that are there to help us. Wouldn't it be oh so nice for your FS to be open to ideas and say 'let's give it a go and see what happens' after all you are paying for his service.


  4. #4

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    I know my FS is so completely dead set against some of these things because a friend of mine has brought them up with him... his reaction to her was so extreme that I'm not brave enough to even mention it to him!

    Fortunately, I've got a friend in the industry (obstetrics registrar), she got back to me today and said that if I'm taking low dose aspirin and don't actually need it, it's not going to do any harm. So I'm looking at it from the perspective of it's not going to make things any worse, and it could actually help, so I'll be starting aspirin after my next egg collection, assuming I'm going straight to transfer this time.

    Of course, I've got no idea how to explain to my obstetrician when I'm pregnant why I'm on aspirin when it's not mentioned in the letter from my FS... but I'll cross that bridge when I get to it!

    I've really been stuck on how the medical profession decides what levels are ok and what levels aren't. How do they decide that a level of 1.1 is ok, but a level of 1.2 isn't?... and who's to say that someone with a level of 1.3 can't be completely ok despite their number? It's probably one of those tricky questions that nobody can answer and it all comes down to "averages". I know too much about statistics to be content with that... aspirin it is!

    BW

  5. #5

    Join Date
    Jul 2005
    Location
    Rural NSW
    Posts
    7,100

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    Oh sweetheart your frustration is tangible... I so hear you on how specialists often don't see you as a wholistic person... just a set of organs that is their "speciality". I'm dealing with this myself for my own health issues.... and I've started seeing an acupuncturist... and a natropath who from the start of my diagnosis gave me a whole lot more faith than any of the 'Western medicos'. At least my GP told me today that he has a lot of "respect" for acupuncture (I raised it very tentatively). He told me that when he was studying he was involved in a very extensive study at (I think) the University of Queensland that tested a group of patients with spinal conditions (gave them acupuncture) against a control group who had a placebo (not sure how they did that! Maybe put the needles in the wrong places ). Anyhow he says there were definite results that indicated acupuncture was a valid treatment. This same GP dismisses everything else my natropath says mind you... but it was still positive to hear him speak so highly of acupuncture.


    Look, I'd take things into your own hands regarding the low dose asprin... especially when you have professional advice that says it would do no harm. Maybe try the product that people use on long-haul flights? I took a low dose asprin daily for a week leading up to, during my holiday and the return flight from Europe. I'm paranoid about thrombosis.

    Be informed (I know you are) and keep researching. If I followed blindly the advice of specialists I wouldn't be where i am today either (I self diagnosed my Cholestasis and also rejected their methods of induction, maybe I'm becoming arrogant but perhaps it's also called taking full responsibilty for my health and that of my children)... It seems to me you just need a little more sense of being in control and if this is all it takes I say go for it.

  6. #6

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    Thank you, Bathsheba. At times I feel like I'm just obsessing about things too much, but your words are helping me realise that I am the only one that knows my body. I guess we get so programmed to trust the doctors because they are the ones that have done all the study... but I've got a consultant rheumatologist that can't even tell me what's wrong with me. My FS can't tell me why I keep losing my babies, or even why my embryos don't thaw well (he can make guesses, but can't tell me for sure)... I guess it comes down to needing to do whatever it is that makes us feel comfortable. My FS can say that it's only working on head stuff all he likes, but dammit, I need that head stuff too!

    Thank you, again, for helping me to find the courage to stand up to the medical professionals and make my own decisions.

    BW

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