Thanks everyone for your quick replies! I really appreciate all your honesty and advice. Good luck to all of you.
Kmn - it looks like the issue we have is that there are 5 possible gene mutations for my condition and they have had no luck finding a lab anywhere in the world that can test to see which one I have. The annoying part is that the clinic here had my disorder on their list of genetic conditions PGD is available for, but now nearly a year later they say it looks like it's not possible.
We only went for the PGD option as they specifically mentioned my disorder on their website, otherwise we were quite happy to begin our IVF a year ago without it.
Thankfully I have just turned 35 and my DH is 36 so losing time until now has not been a huge concern. Hopefully we will get it resolved one way or another in the next few weeks, the clinic has been reluctant thus far to actually say they can't do it but reading between the lines I think that will be the outcome following my conversations today.
Last edited by ladydax; August 26th, 2010 at 02:18 PM.
It is difficult - the overseas testing places are research institutes, and their programs and what they are able to do and how long it will take changes all the time. My condition also has multiple sites for the mutation - I was lucky that the first one tested was the one I have. But then actually creating a test and finding appropriate linked markers took two clinics and a lot of time. I was 30 when I first found out that PGD for my condition was possible (in the sense of being offered in the US, but as far as I know no-one at the time had actually done it) and started talking to the geneticists. And 35 when we finally got to the IVF cycle stage. I can really relate to the losing time issue as well - I remember being so frustrated as I felt my chances were diminishing while the science was being done. I became pregnant on my first IVF cycle, and now have a son. I can't pm you - email me (kate at katenairn dot com) if you want to chat about this some more.
Last edited by onthefly; August 27th, 2010 at 05:12 PM.
I just wanted to give you a big hug in your situation.
My partner carries a gene that has a very high chance of passing it on to our children. He had a brother and sister die from the syndrome, and his mother (20 years ago) had 7 abortions, as directed by her doctors to avoid more children being born this way. I am lucky in the sense that while in her time, there was no probe, one was developed for her case and is now the one we will use today (probably modified with time).
I can imagine how anxious you are about all of this. Of course you want to be able to do PGD for peace of mind, but I know you just really want to get into trying...
Just wondering....does anyone know why doctors say it takes 2-3 times for IVF to work? I've heard a few of you say your doctors have told you this. Is it our bodies and the meds...or what?
Ok, they ended up testing 12 embryos. 2 were ok (from what they could see) 6 were totally inconclusive and no results were obtained and 4 where no good. We had one transfered yesterday, and apparently is was quite a good embryo. The 6 that had no results are being retested. They took cells yesterday (on day 5) and them froze them all so they can take their time looking at the quality.
How did you survive your TWW jaki? It's only the next day and I'm doing my own head in. Any advice would be fab!
Ok great to get a transfer. I hope they get some more good results!
As for the 2ww I have no idea how I made it thru! I do know the first time was alot harder, I was constantly on the 2ww thread on here and altho the women are awesome it fed my obsession. So in my 2nd 2ww I just kept busy at work and with friends, and I stayed away from the 2ww thread. BUT I'm not saying you should avoid that support if it works for you.
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