I'd like to thank you all for your incredibly thoughtful and supportive comments on my last post particularly. I'm still digesting the information but I can see clearly enough now to know four things.
1. The ALI community is AH.MAZ.ING.
2. I'm grateful that these issues have been diagnosed now, and not after an IVF failure or miscarriage.
3. A big part of me feels like we had to go through the failures at our other clinic to get us to where we are now.
Friday I had been emailing with a good friend and fellow blogger, Sarang about how frustrating it is that some doctors practice the immunological studies and some don't. (As was also pointed out by a comment in my last post, thanks LC). There are two MAJOR Universities near me that don't test for immunological disorders. During the second opinion we got at one of the universities, the distinguished RE we saw diplomatically told me that it was 'nonsense' when I brought it up. But just a few hours before that, the OBGYN who works closely with the RE I'm seeing now, told me that his miscarriage rate had dropped by almost 20% since he started following the preventative care methods based on the immunological disorders. i.e. the IVig, and intralipid infusions, and blood thinners for MTHFR - clotting issues, etc. Still, I can't overlook the fact that there are the big guns like CCRM who don't practice this...
What does that say? Is my RE a trailblazing pioneer or a bohemian maverick?
21 comments:
you know what? Ill never understand why some docs believe in the immune testing and others dont. At my previous RE he just flatly refused to test me for any of the stuff, at my next RE he said it was a waste to test and rather just take the meds anyway, which I did (blood thinners, intralipid, steroids etc) and it worked first time with him where I spent 6 IVFs with the old RE because apparently he "was the best".
I have no clue why some are open to it and others are not. Must be some conspiracy... :)
great question. I remember doing tons of research during our multiple IVF failures and our multiple pregnancy losses...and this topic very much interested me. I more of a science person than a fish on my trunk person if you get my drift and I agree that it is annoying/fascinating that there are no clear cuts answers.
That being said, some of the research I remember showed what your previous poster wrote about - some success rates increased, miscarriage dropped - and some docs did not bother testing but started you on that protocol (I think after multiple IVF failures - which I am confident you will avoid)
After going through several different procedures, acupuncture, etc. I believe that any information that can be gleaned can help us in future cycles. Besides, not everything works for everybody, so there is always a chance that a new idea will work.
This is one of my hated parts of the process, no real answers. Every RE has their own theories. Mine (at Cornell) is not big into this stuff and will not really talk about it with me. Is that right, who knows? I sometimes think that the treatment for this stuff will not hurt either way so what have got to lose right?? I hope you find a path feels comfortable and a RE who you feel comfortable with.
I wouldn't bunch the clotting issues in with some of the more controversial immune issues. Many clinics, including CCRM, do test and treat MTHFR, and use steroids, aspirin and other meds as part of transfer (Fresh or Frozen) protocols. And they often recommend acupuncture too. So while some of the more "out there" stuff (like infusions, which don't have a ton of clinical research to support its efficacy) many top clinics do treat these issues. I think your current RE sounds more current and on top of the latest in the field.
i was like you. so many cycles and BFNs, so few answers. i made the switch to a clinic i KNEW would be open to doing the extra testing because my last RE didn't "believe" in it either. now, i'm not pregnant (yet) but i have to believe that a new protocol and MTHFR diagnosis, that i will be successful. i'm mad i had to waste so much time, but on the other hand i'm glad i wasn't all paranoid at the get go. IF is already stressful enough. i regret losing time, but i don't regret my previous cycles. besides, it gave my new RE some real data to start from. does that make any sense at all? :)
p.s. my old RE told me to take a vacation and i'd probably get pregnant. he also told me about embryo testing, but said he didn't believe in that either but he'd refer me to someone if i was interested. he basically fired me. i guess i was hurting his success rates. what a jerk, right?
I'm having a tough time with this too, which is probably why I've been putting off getting back on the TTC boat. How can there be such differing opinions? And what if I miscarry again?
Sorry I don't have any answers, but I wanted to let you know you aren't alone.
I agree with the frustation about how different RE's can be so different in their opinions. I find myself gravitating towards doctors that do believe in all this immunology hocus pocus (as another doctor referred to it - ugh). I may not be a doctor, but it seems to make sense to me. You have to be comfortable with your doc, and trust him/her to do the right thing and have your interest at heart. If docs don't believe in the immunology thing, for me, I don't exactly trust them. But that's just me.
I know nothing on this subject, but I am sending you love and light as you move thru it. This community is great--support is always just around the corner.
Thinking of you.
~Elaine, ICLW
Hmm....Now you've got me thinking. Could an immune disorder cause you to just not get pregnant? I understand how it can result in multiple losses, but I'd be interested to know if can be a cause of not conceiving. I've only had a chemical pregnancy, but I've always thought there must be some magic enzyme or something that's not suppose to be there. If that makes sense.
It is a big frustration, but I guess they need research to back it up before they do put people through risky treatments. Because though we hear about IVIG and intralipids here they come with potential risks that shouldn't be ignored. But, I am glad to hear if you have something you are with a doc willing to treat it! I do think some clotting and other issues are more well proven than others. Like let's say Factor V Leiden, etc...
Slowly sneaking back into the blog world...
And it seems a lot has been happening with you since we met up in August! I wish I had something useful to offer up for all the issues your new RE is finding. He could seriously stop anytime now. Seriously.
My useless 2 cents. Let things sink in. Take your time and research all you can. Decide on what you and hubby both feel is right for you and go for it with no looking back. No regrets. (-;
Sending hugs. I'm sorry things suck right now. I'm swearing right along side you.
The medical profession is so frustrating. You expect that there will be consistencies but then hear about something like this. You are right in that your previous experiences got you to this point. Hopefully now through answers there will be a new plan.
With IVF being around for 20 years, it is still fairly "new." And I say this because in the world of medicine, even something that has been around for about 30-50 years is still considered "new" (i.e. child life services or ER's). This sounds like the IVF world is changing and there is a split between going with the old ways verses accepting new practices. It is a really difficult place to be where new practices may not have as lengthy of research to back them up as compared to other practices or beliefs. But at what point do you take that step into the new medicine? Or for those doctors who do not embrace the new information, is it because they are stuck in their old ways or that they don't want to see people being taken advantage of with promises of things that may or may not work?
I guess the best thing to ask yourself is, what does your gut tell you? Where is your line that you are willing to go? What will satisfy your need in terms of knowing that you did everything that you could? That line is different for each couple. And after talking last night, it sounds like your plan is something that you both are wanting to do and there was no hesitation in your voice. If you have doubts, are these real doubts that something is up or doubts because it is a really big decision and actually going forward is scary?
Love you!
Unfortunately, like you I had to experience disappointments before finally getting some answers. Like someone else above said, CCRM does in some ways address the immunological issues you have, they don't believe in intral lipids. I don't think they are pioneers but they have truly amazing embryologists.
I'm glad your finally getting some answers and hopefully will be in good hands that will make you feel heard.
I don't want to get overly philosophical here, but I think we, as a generation (and several generations before us) were brought up to believe that science was kind of the only absolute truth out there, and the scientific method the foolproof way of finding that truth. Obviously a result of the Enlightenment and Modernism and all such things in the past couple of hundred years. So it's very understandable that we're so disconcerted when science doesn't know something, or when different scientists have different opinions. Of course, Post-Modernism is now trying to debunk science, but as much as we've embraced Post-Modernism, we still believe in science.
Now off the philosophy--I'm kind of shocked that the immunological issues are denied by so many clinics--and universities (I think I can guess which two you're referring to :). I'm very glad you've found someone who's addressing them so you can move forward!
It is very frustrating this whole immunology discussion. Is it hogwash? Or real? I have joined a Resolve group in the East Bay and there are three of us working with the same doc as you. In our last meeting we discussed the whole question of PGD or not. One woman was dead-set against. I'm going to have it done (okay, she's 34, I'm 40, I understand the different point of view.
I think that we should arm ourselves with as much knowledge as possible. The idea is to have a live, healthy baby at the end of this.
Well, I know nothing of the immunology stuff, but I just want to say that I hope with your new RE you feel much more confident in your journey. It is so important to have a good relationship with the third person trying to make a baby with you.
I wish you the best of luck, and I know that there are plenty of success stories out there from MTHFR. Only because I have seen it posted before and I think "Mother F-er".
I have thought that many times. Why AREN'T there more answers out there? Many times I think there is a pretty direct correlation with something yet it hasn't been proven to correlate or be related. There were several things during our IF journey that I was thinking "um, hello! Why DON'T you think this is an issue?". It seemed totally cut and dry and obvious to me but because there weren't a lot of studies, it was considered just a theory and nothing to be concerned about. Anyway, it sounds like your RE really has his stuff together. I think your success rate is exponentially higher because of this guy's competency. He really gets it.
Stopping by for ICLW to wish you luck in sorting through all this.
I'm glad you are beginning to make progress in your diagnosis. I think we all need to find the RE or dr that leads to successes in our treatment, whether that success is a long awaited diagnosis or a treatment that results in pregnancy.
i find this to be so interesting. we're dealing w/ it on the male side. 0% morphology, low volume, low motility, low testostrone - allergic to tons of trees, bees, shellfish & van wilder bronze disease. hmmm. i really wish doctors could look at the bigger picture.
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