That mosaic turner article – and another very very good article!
Skip to the end for the very very good article. I’m so excited I’m practically bouncing. Is it possible that I found some research my RE doesn’t know about? I guess I will find out.
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I’m reading the case report published by my IVF clinic about the woman who had low oocyte maturity and was subsequently diagnosed with turners mosaic. A couple of points:
* She had a much higher oocyte maturity rate as compared to me (32% to 8%, respectively) (average maturity rate at my clinic, btw, is listed in the article as 82% with a standard deviation of 15%), yet never got pregnant after 4 IVF cycles which, combined, yeilded a reported 7 transferred embryos, 5 of which were labelled as “high quality.” I got pregnant within 2 cycles, with 3 transferred embryos. (I honestly don’t know if either of the embryos from my first IVF were considered high-quality, but I want to find out.)
* She did the usual preview to IVF: 5 clomid/IUI, 3 inject/IUI. The RE, when I was talking to him, at one point asked me to clarify how I got to IVF. As in, he was confused as to why we had done only 2 clomid/IUIs, then jumped to IVF. I explained insurance, but I kind of wanted to say that we had pushed for it, suspecting that whatever was wrong was not going to be fixed with clomid or injects. We happened to be right.
* The patient then underwent three IVF cycles with ICSI (due to low sperm count), all with low oocyte maturity. Now, granted, she didn’t have as many immature eggs as I did. But it still disturbs me that they did THREE cycles before deciding to investigate it and discovering the turners mosiac syndrome. Maybe they thought the maturity rate wasn’t low enough to warrant investigation, maybe they thought she should still get pregnant with what they had. But still.
* The article does not specify what protocol they used on this woman or whether or not they modified that protocol for the second and third (and, later, fourth) attempts. This would be very interesting to me.
I’ve said before, I am not going to be a typical patient (is there such thing as a typical infertility patient?). I will be going in with data in hand, with a pretty good idea about what I want them to try next, as they have never seemed very proactive on their own. I don’t know if I can blame them for that – I think most IVF clinics will typically proscribe the “standard” treatment ladder steps for unexplained infertility patients. And I guess that’s the smart thing to do, in many cases. But something in my gut told me to skip to IVF. And I was right. Whether that is hindsight, I don’t know. But I trust my gut when it comes to this.
I assure everyone that if I do not get satisfactory answers I will seek a second opinion, though really we don’t have a lot of options around here; the clinic I was going to switch to after my second “failed” IVF may be too far away to really be possible with my new job. But right now I am just waiting to see what the RE comes back with and how willing he is to work with me. And, really, even if we do the exact same thing as last time… that worked, right? That wouldn’t be too horrible. I just wish we could raise our odds a little, that’s all. Maybe make some progress on figuring out oocyte maturation arrest… give others a tiny bit of hope.
So we shall see. We have a ways to wait. The appointment isn’t until Sept 15, which irritates me. I hate waiting. Granted it irritates me less now that I know we won’t be doing injects or anything in between now and IVF. I mean, I guess we could try it, but it doesn’t sound like it’s really worth our time or effort… or mental capacity. Do I really want to do monitoring and injections and trigger and required actually thinking about my cycle and timed intercourse… all knowing it’s not going to work? My idea of ignoring my cycles until IVF sounds more and more tempting every day.
But then I think about how the next three months are going to be three months of learning a new job (always stressful, being new) and then I want to start thinking about something else, like babies……
It’s a vicious cycle. No wonder TV is so popular. Mindless entertainment and time wasting. Do I really want to just skip over the next three months? ….. Maybe I shouldn’t answer that.
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Ohhhh, lookie what I found!!! This is a randomized study published in 2006.
http://www.ncbi.nlm.nih.gov/pubmed/16828475
In plain-speak: In patients with a high number of immature oocytes they tried triggering earlier than normal before retrieval, with a group that triggered around 38-39 hours before and a group the triggered at the normal 35-36 hours before. They had no incidences of ovulation occuring before retrieval. And they significantly increased the percentage of mature eggs after retrieval. Significantly, as in, they averaged a 76% maturity rate in the group with an earlier trigger!
Freakin’ fantastic. So now I know what we need to try, and I have the medical literature to support it. Take that, REs. No medical research available, MY ASS.
(I just woke Den up to tell him about this. I asked, “Why doesn’t our RE know this?!” he mumbled back, “You think they spend hours combing through research?” ….. Well, they should. Especially if it’s about MY condition. Hmph. I get the feeling he currently isn’t as excited about this as I am. Wonder why… *glances at the clock*)
Wow, that article sounds amazing!!! If anyone would find it, it would definitely be you. I tell people you are the research queen and if there is an answer out there, you will find it. I am so interested in what the RE is going to say when you show this information!
P.S. Don’t even ask why I am awake at this hour!
Good for you for finding the research! I recently was talking to my brother, who is a doctor, about my suspicions that my doctors really just don’t know and how I thought it is impossible to see as many patients as they do and still keep up with research. He wholeheartedly agreed and he only specializes in 2 diseases, and he can’t even keep up with the research. He says it’s just a sad reality but that it’s physically impossible for doctors to do that. And this is coming from someone who is well-known in his field. I think it’s unrealistic to rely on our first set of chosed doctors for the answers! You being an advocate for yourself is the most important thing you can do as well as switching doctors if you find that your chosen doctors are not receptive to what you have learned!
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That’s awesome that you’re doing your own research. Isn’t the internet grand? I’m starting to think the sum of human knowledge can be found online. Everything is so specialized, in every field, that you can’t possibly rely upon a local ‘expert’ to have the answers. Every human holds only a tiny piece of the puzzle in their heads. But, each of us can access a much bigger brain. Only, few of us realize it. :)
Well, they should spend hours doing research, especially if they are about to meet with a patient and tell them there are no answers out there. Cause then it’s just bullshitting.
I have to tell you, last fall I kept going to my RE with articles I pulled, and he kept being annoyed. I should’ve just dropped his ass the second time that happened. Never making that mistake again, I swear.
Julia – Well, if he treats me like an idiot or if he’s irritated and not willing to listen to what I bring him, then it’s game over for them. So a lot is riding on this next appointment.
And I agree with both sides – I understand that doctors can’t possibly know EVERYTHING and that they have limited time to do research. But it would have been GREAT had he actually reviewed my chart prior to us arriving (seriously, the Resident who interviewed me had NO clue what was in my folder – I doubt the RE did either until she went out to tell him what I told her). And for him to actually have written papers on the subject and saying there’s no info out there, well now that irritates me.
So yeah, I’ll be looking for a lot of answers.
wow. there is so much research out there and so much of it is circular bullshit. like one person quoting another and so on. you do have to take time to find the good stuff…and i think you did. it’s sad when the doctors who are “experts” are closed to new/different things and get annoyed (like julia said). my RE is supposedly really, really good…he’s pioneered many techniques and is on TV all the time. despite this he falls closer to the camp of doctors who are not as up on the research as the patients who are in desperate need of their help.
we did IVF twice. I was 29 the first time and 30 the second time. the first cycle resulted in 21 eggs and only 4 embryos. we got pg w/ twins and delivered one living baby who is now 21 months. my next cycle (when ds was 5 months old) we got 24 eggs and only 3 embies. we got pg w/ one boy who is now 6 months. i wonder, looking back if i have the same issue as you natalie? we are looking to do IVF again….i wonder what the outcome will be? will i still have a “miserable response” as my RE put it? i appreciate your research as i’ve been confused about why, how i could have so many eggs and so few fertilize. damn.
thanks once again sista :)
KC – Sounds like it could very well be the same issue. Do you know how many of your eggs were mature? Did they do ICSI or no? Feel free to email me, I’d be happy to chat with you and share whatever I find out!!
Nat, I think you should become the world’s first expert in women with low oocyte maturity!
But seriously…go you for being your own RE. Devin would be so proud of his mommy. You’re taking matters into your own hands (beyond “staying healthy”) and that could be what makes the difference.
I think we should strike a deal: You give me some of your strength and I’ll give you some of my egg-maturing capabilities. Sound good? : P