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Looking for advice/stories/experiences with IVF and PGD, please!

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#1 Guest_MummaKay_*

Posted 22 October 2014 - 02:29 PM

Hi Everyone,

I am really hoping to find someone to talk to here!

I am a 34 year old Fragile X carrier. I have two healthy babies free from the faulty gene, this was lucky and I've done CVS for all my pregnancies to look for this. I've also had a heartbreaking termination for a full blown mutation. I have no trouble falling pregnant, but an undetectable AMH level as tested 4 years ago (have been pregnant 4 times since, miscarriages for other reasons and the termination, so I find the result confusing).

We would like a third baby, but I know I can't go through that again - the CVS, the waiting, possibly getting a carrier which we would proceed with, but would be so awful for them as it has been for me.

SO, we will be meeting with Genea to discuss IVF with PGD. Is there anyone here with Fragile X? I've read (but not been told by FS) that Fragile X carriers often don't respond too well to the drugs. I'd even just love to hear first hand experiences, good and bad, as we weigh up whether to go ahead with this or leave it at two, and count our blessings.

Thank you all.

#2 Guest_MummaKay_*

Posted 22 October 2014 - 02:41 PM


#3 mandala

Posted 22 October 2014 - 02:47 PM

You might have to wait until after dinner to get a lot of traffic! It's quieter here during the day.

I have family with Fragile X, and family who are carriers. I would wonder if the link between early menopause and Fragile X carriers would have something to do with responding poorly to the drugs. It would be worth discussing that specifically with your FS.

#4 Guest_MummaKay_*

Posted 22 October 2014 - 03:03 PM

Thank you! I confess i did the bump because I'm not really sure how to use this format properly and couldn't see my question.
Both my older half sisters had failed IVF, and both had menopause before 40. I know at 34 I'm cutting it fine. BUT they were both also unable to conceive naturally at all, had problematic periods etc.
I get pregnant if my husband looks sideways at me, though staying that way is another matter. And my periods are bang on like clockwork. I believe I'm still ovulating every month, I have ovulation pain. At my 6 week scan after having my 2 year old daughter I was about to ovulate. We will see I guess!
I'm just hoping to hear what the actual experience is like and if anyone is up against it like we seem to be. Statistically speaking, this sounds like a good way to bring heartbreak and massive spending - likely near menopause, likely to not respond well to the drugs, likely to have 50% genetically faulty of any embryos that do manage to make it if there are any.
I know it just takes one good one though, I'm thinking of that!

#5 causeway

Posted 22 October 2014 - 03:06 PM

My FS tested me for Fragile X status as my AMH was less than 1 at 38. We do have 1 IVF DD but would love another child. I also am a poor responder. Our last IVF is in December, using a different protocol. BTW, I am not a carrier.
I do hope you'll get some answers

#6 mandala

Posted 22 October 2014 - 03:18 PM

One family member in particular who is a grey area carrier had lots of trouble conceiving naturally - IVF wasn't available, and there certainly wasn't any PGD or even genetic testing available back then. I've heard similar anecdotes about subfertility from other carriers.

Have you contacted the Fragile X association? They might have someone they can put you in contact with.

#7 Guest_MummaKay_*

Posted 22 October 2014 - 04:18 PM

I have been in touch with the association, but not for a while, that's a good idea.
I guess I could be more specific with my questions!
Has anyone gone through the process, had success or not? How did it impact you physically? Anyone had success with poor AMH?
Edited to abide by the rule of not mentioning specific offices. Are regional services generally equivalent to the city offices in peoples' experiences?

Edited by MummaKay, 22 October 2014 - 04:22 PM.

#8 causeway

Posted 22 October 2014 - 04:43 PM

EB has a Low Ovarian Reserve Buddy Group - you can check it out. Please do not take your AMH as a diagnosis... It is just an indicator. There are plenty if women who have gone on to have healthy babies with Low Ovarian Reserve. Mine was about 2 when I had DD. My friend conceived naturally with an AMH of 1.7.

#9 Smoo

Posted 22 October 2014 - 04:49 PM

I've just been given the same recommendation from genea for a balanced translocation. We're still deciding what to do and have genetic counselling next month. I can't give you any first hand experience but I wanted to wish you good luck.

#10 Guest_MummaKay_*

Posted 22 October 2014 - 04:53 PM

View PostSmoo, on 22 October 2014 - 04:49 PM, said:

I've just been given the same recommendation from genea for a balanced translocation. We're still deciding what to do and have genetic counselling next month. I can't give you any first hand experience but I wanted to wish you good luck.
Thank you! It's so hard to know what to do isn't it? I wish you the best of luck too.

#11 Masquerading

Posted 22 October 2014 - 05:05 PM

Hi ladies,

I have done PGD for a balanced translocation. My PGD baby is about to turn 6 .   I'm happy to answer any questions about IVF/PGD.

I wish you both well on your journeys and hope that like my journey, you only need to go down the IVF with PGD path once.

Feel free to PM me.

#12 Guest_MummaKay_*

Posted 23 October 2014 - 12:47 PM

Thank you so much! I have done so!

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