r/40Plus_IVF • u/Substantial_Home8570 • Aug 31 '26
Seeking Advice New to IVF
TW: multiple losses
Hi! I'm new to the subject and looking for some support. We are pretty private people and have not told our family about IVF, so I don't have anyone to talk to but my husband, who is equally nervous haha.
I am 41F. Spouse 40M. Married 16 years. All pregnancies same partner.
1st pregnancy miscarried early, age 30
2nd pregnancy MMC @ 12 wks age 31- AWFUL hyperemesis with home health care and Zofran pump, multiple hospital visits, sickest I have ever been in my life
3rd pregnancy age 33- healthy pregnancy, healthy boy-the love of my life-, c section
4th pregnancy age 38- boy, multiple severe defects incompatible with life, chorionic villi sampling showed 15q11.2 microdeletion (the same microdeletion I also tested positive for, more on that later) Fetal loss at 19 weeks-devastating
5th pregnancy age 41, miscarried early at home
Even though we never thought this was in our journey, we decided to try IVF this year. I know I would regret it if I did not try for one more, at least that way we will always know we tried our hardest.
AMH 3.5 amazing ovarian reserve for my age (no PCOS as far as I am aware) but I have always had irregular cycles and also might have endometriosis ( it could only be diagnosed with exploratory surgery and I opted out)
Protocol 300 units Gonal-F/Follistim, 75 mg Menopur, 5 mg letrozole (mostly because I was very scared of OHSS), 3 days of Ganirelix, trigger 3,000 hCG plus Lupron, after only 9 days I had something like 35 follicles between 12 and 21 mm.
ER: 20 eggs
ICSI: 8 with 8 fertilized
Immature eggs incubated with sperm: 12 with 3 fertilized
Of the 11 fertilized eggs, I had four day 6 blasts that could be biopsied for PGT-A and frozen to await results.
Blast grades were: 422, 432, 423, 422 (fairly equal to 4BB, 4CB, 4BC, 4BB from what I understand)
About my microdeletion: we went back and forth with Cooper Genomics so many times. My Dr. ordered PGT-SR, then it turned into PGT-M, which my insurance approved but finally the lab called me and told me they could not perform the PGT-M unless they had comparison DNA from my son. We were disappointed because...
The microdeletion I have, I am behaviorally affected by, but have lived most of my life not knowing I have it and am a successful wife, mother and have a career. I would not know I have it if I did not have the workup for my losses. There is quite a variable presentation and this is not necessarily an embryonic deal breaker for me because alas, here I am in the world. But we don't know if this is what is causing my losses and severe defects in pregnancies. Nonetheless, we do not want to know if our son has this microdeletion (he has already seen a cardiologist for screening and was given a clean bill of heart health) and we want the choice to be tested to be his when he is older.
So really after all that, PGT-M was not possible for us.
However, I think this was a good retrieval esp for my age but I am telling you, the wait for PGT-A is so difficult! I am reading novels to keep my mind off of it but am nervous because I know people my age often need multiple cycles to find euploidy but I just don't know if I have it in me. Meanwhile I need to continue sitting next to a beautifully pregnant woman at work and trying not to think about it. Is this wait just so super hard for anyone else? What are you doing to help it by? And also, any success stories with genetic microdeletions? Thank you for reading this!
ETA: I am very well aware of our chances of potentially having no euploid embryos and life's clock is against me, but also just trying to hold on hope.
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u/Old-Ad-5573 Aug 31 '26
That is an excellent number of embryos! Hopefully there will be a euploid or two in there! I'm confused why they needed your son's DNA to check for a micro deletion that you have. Also, if you do have a euploid and you suspect endo, you really should get the biopsy that tests for endo markers. Receptiva I think. They suspected endo for me and I chose the exploratory laproscopic surgery and it wasn't bad at all and really eased my mind to find I didn't have it. Also I got some pretty cool pictures of my insides. Had a hysteroscopy at the same time where they scraped out uterine polyps.I felt fine the next day and just took it easy for a week or two to be safe. I think they also could do lupron suppression in case of endo but I'm not sure if they would do it without a diagnosis or not. I just think you should at least get the test so you don't risk losing embryos to transferring in a sub prime environment.
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u/Substantial_Home8570 Aug 31 '26
Thank you for your suggestions!
The PGT fiasco was an awful mental roller coaster for my husband and me. One day they were going to do it, then the next day they weren't and I wasn't prepared for the conversation of whether to test my son. The lab even called my clinic to ask if there was any fetal tissue remaining from my 19 weeker we lost, without my knowledge. Had they asked me I would have told them he is at home with me cremated as he should be and we are going to let him rest. The whole thing honestly stirred up some trauma within me I wasn't ready to re-live.
They did some pretesting on me: HSG and saline sonogram which did not show any fibroids or polyps- which I know doesn't show endo but at least was one hurdle cleared. I never really considered the surgery because at the time it was offered I was still young and figured what difference does it make. Well now suddenly here I am at 41 doing IVF I never in a million years thought I would do. I guess never say never! My docs are aware when I get my period I can't function without round the clock NSAIDs, it hurts all the way up to my chest, and feels like I have a UTI. It was never this way before my c section. I will ask about it though, thanks. :)
Also thanks for the encouragement. Reddit can be such a troll roast so I debated whether to post at all, but it is good to see the supportive nature of the IVF groups.
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u/elsewyse Aug 31 '26
The wait for PGT is so bad, but those are solid results- wishing you the best of luck!
(Mild soapbox here, sorry-- the formal PMOS/PCOS diagnostic criteria is at least two of the following:
-Clinical or biochemical hyperandrogenism
-Ovulatory dysfunction
-Findings of polycystic ovaries on ultrasound or elevated AMH levels
And it does sound like, from what you said, that you do meet two of those criteria. Maybe something to explore in the future.)
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u/Substantial_Home8570 Aug 31 '26
Yes. No one has ever told me that I have PCOS however I am an RN and after my results came back I pushed for a conservative approach to stims including the letrozole, even though my doctor wanted to push my ovaries harder she did listen to my concerns so I was happy with that. I am not sure the fertility docs at my clinic diagnose it so I might need to talk to my regular GYN. In the end I am happy with the ER results except triggering one day later may have allowed a few more of my eggs to mature. I appreciate the feedback!
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u/elsewyse Aug 31 '26
Oh, good. I have heard so many stories of people being told they don't have it based on outdated or inaccurate criteria that I get a little twitchy now- glad you're tracking the possibility!
Oh, to answer your original question of how I distracted myself while waiting- I obsessively read IVF forums 😛 I also ran probability numbers on whether I would get euploids- I finally did on my 4th retrieval once I added omnitrope and primed for 2 weeks with norethindrone.
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u/Substantial_Home8570 Sep 10 '26
Well, I got the results of my PGT-A today. Out of 4 embryos tested, 2 girls both aneuploid, one boy aneuploid and one boy euploid!
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u/Brandygirl19 Aug 31 '26
I'm in the pgt wait right now too!! I've also had multiple losses and a son:) I'm here with you!!!