What’s Next: Doctor’s Appointment Update

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Disclaimer: This is fairly boring post that you may want to skip if you’re not interested in the details of IVF or miscarriage.

We had our what-the-f*ck-happened appointment with our doctor on Monday. I had a two-page list of questions prepared, starting with the IVF cycle and ending with the miscarriage. Here’s what we learned:

I did not respond to the IVF meds as well as my doctor thought I would. She initially started me out with what  was a higher-than-normal dose because she was worried there might be some after-effects of the cyst. She said she was prepared to lower the dose, but instead ended up having to up the dose. She said this could indicate that I had lower ovarian reserve, despite the fact that my FSH and AMH (two tests they use to predict ovarian reserve) were good. I guess ovarian reserve is a big predictor of IVF success. The more you have, the more likely you’ll be successful. And the opposite holds true for low ovarian reserve — less chance of success. So, yeah, great, possible secret low ovarian reserve. That’s definitely what I wanted to hear. I’m not even sure what to do with that one. I feel a little blindsided by it. I don’t understand why my tests would be normal, yet my ovarian reserve is still possibly jacked.

If we do a fresh cycle going forward, she would continue with the same protocol as the first time (estrogen priming with no birth control pills), but start out with the higher dose of meds than I ended up with last time.

As far as the recurrent miscarriage tests go, the ones that came back so far were normal, save for one of the blood clotting ones, which was slightly elevated. She said that could just be attributed to still being pregnant, though, so they will retest me once my hcg drops to zero. The genetic karyotyping that Tim and I had done is not back yet. There are also several other tests that she wants to do, but she again wants to wait until my hcg is at zero.

Apparently my last hysteroscopy showed a slight heart-shaped uterus and a slight septum. Either of these things could have contributed to the eccentric embryo implantation, which could have contributed to the miscarriage. She said that the hysteroscopy findings previously did not worry her because I’ve had a successful pregnancy in the past. But now, based on the fact that I’ve had the wacky implantation, she may recommend surgery to get the septum removed. Sweet, another possible procedure. She’s going to see what the results are of my next hysteroscopy are before she makes that decision.

I had a D & C on Thursday (more on that in another post) and they are going to genetic test the “products of conception.” Lovely term, right? Apparently, it isn’t a sure thing on whether they can get reliable test results or not (I’m not clear on why), but hopefully we’ll get some more information.

Because I’ve had two losses, my doctor suggested that we pursue genetic testing if we do another fresh cycle. Apparently, if there are no other underlying issues, blastocysts that are genetically normal have a 70% chance of resulting in pregnancy.

We basically have a few options going forward:

1) Use the frozen embryo we have and don’t genetic test it.

2) Use the frozen embryo we have an attempt to genetic test it. If it’s already hatched when it thaws, then it can’t be tested.

2) Do a fresh cycle and genetic test the embryos we get during that. We can also defrost the frozen one at that time and test it with the others, if it can be tested.

Right now we are leaning towards option three, a fresh cycle. I’m not sure what we’ll do with the frozen one yet — that’s what we can’t figure out. I don’t want to end up doing something that will waste it somehow. I would hate to thaw it, find out it can’t be tested and then have to re-freeze it and risk damaging it. It very well could be totally normal. It could be our take-home baby, but I’d like to have some backup in case it isn’t. There are just so many unknowns here, it’s hard to know what to do.

I think the results of our recurrent miscarriage panel and whatever we learn genetically about the baby that I miscarried will help guide our decision as well. It could be well over a month until all of that comes back, so for now it’s all speculation.

Regardless of what we decide, I’m benched from starting another cycle, be it frozen or fresh, until at least mid March. I have to wait for my first period so my lining can repair itself after the D & C  and then I have to get another hysteroscopy. So I won’t be able to start another cycle until my second period after the D & C. Plus, who knows how long this potential uterine septum surgery could delay things

And that, my friends, is what’s getting to me the most about this whole experience: waiting, waiting and more effing waiting. I just want to be moving forward. I feel like time is one thing that I don’t have the luxury of right now.

At least two more months for another chance at getting pregnant. That’s just for another chance! And if that chance doesn’t work, more waiting. And even if it does work, it doesn’t mean I’ll have a healthy baby in nine months. I know that, in the end, this period of infertility will just be a few years out of my entire lifetime, but right now I’m struggling to see anything beyond the waiting, uncertainty and heartache.

35 thoughts on “What’s Next: Doctor’s Appointment Update

  1. I’m sorry for all of this, it just sucks! And then testing and procedures are never fun. I say be sure to enjoy your forced time out – do everything you aren’t allowed to do when you are pregnant. It always helped me through the delays.

    1. Thank you so much. I know, I agree with you. I should definitely try to embrace the forced break. I’m not there yet, but I’ll get there. I’m definitely going to start running again after my post D & C exercise ban is lifted, so that’ll be something at least.

  2. Oh man I so get this post. I worked out the other day that if we do a transfer in Feb it will 4 months (4 MONTHS!!) since my last transfer. Seems ridiculous. Plus we now have the risk that we will miss transfer that month because of genetic testing delays so it could even be 5 months. Fuck a duck. So I get how you are feeling. There seems to be nothing but waiting. I have had 2 early miscarriages too on this TTC journey so I am pleased we are doing the genetic testing. If i get a really high number of slightly off embryos at least then I will know what is fucking going on (so much swearing in this comment – sorry!). So I imagine you will feel the same way. The genetic testing actually holds you up in a cycle so you can’t do a fresh transfer so what you could possibly do is do a new cycle and send the embies off for testing BUT t/f the frozen one if it thaws hatched. Your body is prepped so you might as well. Just a suggestion. Hoping you don’t have to have any surgery 😦 My thoughts are with you hon xx

    1. Yes, that will be the same exact thing for me, too! Four months between my last transfer and the next one — and that’s if absolutely everything goes right. If we have to wait on the genetic testing or if anything else goes wrong (surgery, etc), it’ll be five or more. So effing nuts! The weird thing about my RE’s is that they are literally right down the street from the genetic testing place, which means that if the embryos are beginning to hatch by day 5, they can actually get the results back by day 6 and do a transfer on day 6 if there’s a normal one. Crazy, right? If they’re not hatching by day 5, then a fresh transfer isn’t possible. Last time I only had one hatching on day five, so I’m not holding my breath for that. I like your idea of just transferring the frozen one, even if it can’t be tested, while the other guys are being tested. I really do want to use that one if I can. Would be such a waste not to. At any rate, I’m glad at least one of us is getting started on the next cycle. Really looking forward to hearing how it all goes for you, especially the genetic testing part. Jeez, this whole thing is such a mind fuck!

      1. It totally is. That’s awesome you can get your genetic testing back so quickly. I wish it was the same for us. I have my scan today so feeling nervous and hopeful and all those things. I think the number of follicles I had hanging about on my first scan last cycle was about what I ended up with so I really do think this scan is a pretty good indicator of what you will get. (that’s me deciding this from my massive sample of 1 lol)

      2. I was thinking about this more after our comments this morning and I wanted to tell you a stat that they told me at the clinic – 45% of embryos will be abnormal (as it relates to chromosomes) even if they make it to blast, SO if your recent bubba didn’t make it for chromosome related reasons then based on stats, your embryo in the freeze should be good. I know it doesn’t always work out exactly like that but it’s a numbers game and they could work in your favour this way. Another good reason to transfer that one you have on the freeze 🙂

    2. Oooh, thanks for sharing that stat. I wasn’t sure what the details were, but I was figuring it was something like 50%. So yeah, if the most recent embryo was genetically abnormal, there’s a very good chance the frozen one could be A-OK. I guess we’ll see what the genetic testing from the D & C reveals. So many unknowns right now, ughhhhhh.

  3. I have been looking out for an update from you, thought you might be taking time out but sounds like a lot has been going on also. I totally get the whole running short of time and waiting game. It maybe March at the earliest for us too. Any testing you can have has got to be good, we get offered virtually nothing here in the UK. I did have the ‘products’ (I HATE that term) tested but got nothing from this and in a way you hope you do for an answer to why it happened at least. I personally have not heard of anyone getting results and other people I know in UK never got offered it even! If I face the nightmare of mc again I will say no to them testing baby etc. I also had my thyroid checked something to do with an antibody linked to mc as part of a trial at the hospital, it came back negative which is good but did not give me any answers. So the more tests the better I say. Sorry you are facing another procedure before you can try again. You also face the big decision of what to do re your frozen embie, it really is all decisions and waiting! I find it weird re fsh and amh being fine yet she thinks your reserve is low? Why test if it does not tell the truth! My amh is low my fsh ok, he is talking about adding gonal f next time I was already on max menopur plus a scratch to help implant, are these things you could consider? Good luck hun sending hugs. (sorry for long comment), x

    1. Thanks, friend. I think you are right that all the testing can only be a good thing. I hope to get some answers from it, but we’ll see. What meds were you on last time? I was on Menopure and Follistim. I will ask about Gonal F and the scratch thingy. Never heard of that procedure!

      1. I was on menopur (450 which I was told was max). He also said he would give me Progynova prior to collection next time, I think it is to help prepare womb lining? Last time I took it from transfer along side the nasty progesterone jabs – maybe ask about jabs too? Were you not on pessaries? Not sure why they sometimes use jabs and sometimes pessaries, I had pessaries last time I was pregnant and mc. The scratch thing is pretty new procedure I believe and if you google you will probably get more info but he explained it as making a trauma (scratch) and the repair process helps implantation. It cost a few hundred pounds, yet more money but if it works! I really thought that I had reached the end of the line, my reserve is rubbish and I had took max drugs but without great success and then he tells me we have other options. He also said he was happy with how I responded, so for you your response to drugs and what you achieved was a lot better than me. I know obviously it ended sadly but I think you should not panic about what she said about your egg reserve. x

  4. I’m so sorry you even have to think about any of this. And I too hate the ‘products of conception’ term (I’ve had that used on me too!) and wish people wouldn’t use it. To me, it was a baby – not a ‘product.’ I get why it is used but it’s still aggravating.
    I hope you get some answers from the genetic tests as well. Sending you a big hug and lots of strength and light as you navigate the next few weeks and months.

  5. Ugh I am so with you. The waiting is the worst. I have absolute confidence you will have another baby but this in between phase is just so rough. I also have one low grade day 3 frozen embryo from my last failed cycle. I plan to potentially thaw it and transfer it with any embryos from my next fresh cycle. I have severe DOR so usually only have a few if any each cycle. My suggestion is you do something new these next few months that make you feel like you are doing something productive towards success. Add a supplement (CoQ10) take fertility yoga or acupuncture. It always helps me to feel like I am at least doing something towards having a healthy pregnancy. Also- enjoy some wine while you can 🙂 xo

    1. I like your suggestion of doing something while waiting. What supplements do you take? I’ve actually been thinking of you since my doctor told me I might have DOR issues. I remembered that you have DOR and, in spite of that, have a healthy son. It gives me hope.

      1. It should give you hope! Both my twin sis and I have very low AMH (.7 and .9) and I have a AFC ( follicle count) of 5 or 6. Very poor prognosis yet we both had eventual success with IVF. It truly takes one ( or two) good eggs. I was taking DHEA and CoQ10 with my prenatals but now just take CoQ10 and baby aspirin. The DHEA has added hormones and I don’t want to mess with those about month out from another cycle. Hope you are finding some good distractions!

  6. The waiting and waiting and waiting is the worst! Im so sorry for this. I do think genetic testing is the way especially if you have any sort of low ovarian reserve. I did all of that and genetic testing on all three we had were abnormal, what weve learned is the more we have the better chances and true 70-80% chance of healthy pregnancy. If we do it again we will batch a few cycles to have better chances. It only takes one good embryo and it sounds like you will absolutley have some. Keep your head up! Sending xoxoxs!!

    1. Thanks so much for the support! Do you think you guys will do IVF again? When I read above that you might do it again, it made me smile because you had said before that you were done. It makes me happy to think that you might be getting even just a little bit of hope back. Xo.

      1. Your so sweet. We had our post failure appt. last week and I haven’t posted about it yet but will soon. I think my Ry wants to do it again but batch without a doubt before moving on to donor. Its such a scary thing, I walk up and fall asleep to my thoughts every day. I can’t imagine failing again but I do feel PGS is the only way to go at this point.

  7. Yep, im with you on the waiting thing!!! We lost our third baby in July, had to wait till October for a laparoscopy, then had to wait till December to see the specialist, now having to wait till Feb/March till we can try again……7-8 months total!!!!!! It’s without doubt the hardest part of all of this, especially after losses. You dont feel like you’ll be happy again until you’re pregnant, but then even if you fall pregnant you know you’ll be worried – talk about a no-win situation!

    Ive been thinking of you and am so sorry for everything. Hoping for some helpful answers from all the testing. Lots of love xx

    1. Oh my gosh, you poor thing! Why did you have to wait so long for you laparoscopy? And then so long for the specialist? That just seems like cruel and unusual punishment. Seriously. I’m glad you are at least on the downswing of your wait now. Thank you so much for all the thoughts and support — I really appreciate it!

      1. I know – bloody nightmare eh?!

        I had the laparoscopy on the NHS and thats just how long the waiting list was. Then we decided to see the private specialist and December was the earliest appointment which we could get. Like you say, good that things are starting to move forwards at last!

        Really hoping that things move well for you too, lots of love xx

  8. Eugh, the waiting. It’s f*cking endless in this game. It’s the thing that hacks me off the most about it. You try a few times and suddenly almost 3 years of your life has disappeared. Re the genetic testing – we had this done on a loss in March. It’s very hard for them to identify the correct tissue to test after a D&C and it can easily be contaminated with tissue from our uterus. If you get test results back as male, then your results are reliable – there is no way that you could get male results from your body. If you get test results back as female, then it could be you, or the baby. If the chromosome result is bad, then it’s the baby – but the most difficult case is normal female, because then there is no guarantee that the tissue really did originate from the baby and not from you. Does that make sense? I read a lot about it when we had ours done. We had a normal boy, which just made me cry so much. I felt like it was my fault that he hadn’t made it. I hope you get some answers, and some progress, soon. Thinking of you xxx

    1. Wow, thank you so much for this information! I had no idea about any of it. It definitely makes sense now why they might not be able to tell. My heart hurts for your normal boy — I’m sorry that happened. Did they do other tests on you once they found out he was normal — blood clotting, etc?

      1. We’d already had the standard set of tests done for recurrent loss before the fetal testing. I’m apparently completely normal and healthy in every way and so is my husband. Ironic. The only big factor is my coeliac diagnosis in April last year, which is linked with recurrent mc. But this time around it was chromosomal (anembryonic), so don’t know if it was just bad luck for the first pregnancy since then. I am 40, so would expect some eggs to be no good. It’s officially a mystery, sadly.

    2. And totally random, but for some reason I feel like I’m going to be more upset if I find out this baby was a girl. I think that’s because I have a girl already and know what that’s like and how much I love her. It’s fucking sad either way, though.

      1. I completely understand that. It’s why it hurt so much when I found out it was a boy. Also, I had this crazy theory that maybe I couldn’t carry girls, but that was blown right out of the water!

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