Disappointed & Confused (6 hour RE visit mentioned) — The Bump
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Disappointed & Confused (6 hour RE visit mentioned)

I got to the RE office for my USI, which was the last test I had to run, at 11:40.  He was in the middle of a surgery which ended up having complications.  They kept telling me that it would be another hour, and I didn't want to leave because I had to do it on a certain CD.  So there I sat, hour after hour, thinking that he was going to finish up any minute and come in.  They did my ultrasound, we ate lunch, we sat there and waited.  My mom was with me and in a different car because I had to pick DH up at the airport.  She ended up going to get him and bringing him back to the RE's office at 4.  Finally at 6:15, they saw me.

There is nothing wrong with my uterus.  All my bloodwork came back normal, except my hormone levels indicated PCOS, so they will put me on some medicine for that. 

Our next step:  We are still waiting for the karotyping to come back, it's the last blood test.  If it is normal, he wants to do a PGD.  Isn't that after doing IVF?  I'm very confused.  He was talking about freezing things and putting things back and it was just flying right over my head.  I asked to write it all down and he handed me a pamplet to look at, but it's not helping.  I wasn't ready to take this big of a step yet.  I'm getting pregnant, but I'm not keeping them in there, which is a big thing.  Now DH is all stressed out about how much everything will cost.  He says, "Well maybe we just won't have kids."  I'm very disappointed and just in a bad place.  I don't know what to do next.

Re: Disappointed & Confused (6 hour RE visit mentioned)

  • awww hon I am sorry {{{HUGS}}}}
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  • Sending hugs.

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  • I'm so sorry that you had SUCH a long day with a doctor who doesn't even explain things.

    PGD is preimplantation genetic diagnosis. this looks for things like trisomy that could/would result in miscarriage, they would take the embroys that pass the test and implant them in you.

    I only know a little bit about IVF though.

     

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  • That sounds like a long rough day, I'm very sorry.  ((HUGS))  I'm sure when you see him next you'll have more time to ask lots of questions to make sure you know fully whats going on. 
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  • Thanks, everyone!  I don't know what I'd do without these boards!

    PGD sounds a lot like them sending off the POC after my D&C.  But I know it has to be different than that.

    We go back in after the karotyping comes back to come up with a "plan."  Now that I'm not as upset and thinking more clearly, I will be able to brainstorm some questions to write down.  He did come in from an 8 hour surgery to see me, and didn't really take time to look at my chart.  I just felt like there were a lot more tests that could be run before we resorted to something so invasive and costly.  I'm going to try not to think about it until I go back in.

    Let me just say again that I love yall!

  • Sounds to me like your doctor doesn't have very good social skills if you left that confused. I would recommend asking for a follow-up appointment to clear up all your questions. DH and I did this. When we got the super low AMH diagnosis and he started talking about IVF, he gave us a very general overview - but he is awesome at explaining things, so it was understandable. We went home, digested the shiit news, and started coming up with more and more questions as we researched some more, adn went back in for an hour+ follow up in which we really gave him the 3rd degree about EVERYTHING.

    I highly recommend this approach.

    And yes, PGD is part of IVF. You guys definitely need a sit-down consult with him to go over all of this in more detail, when your heads aren't spinning. I, too, can get pregnant easily but just not keep them, but IVF is the recommendation for me too. But I got a good, solid, coherent explanation of why. 

  • ((hugs)) I am so sorry for the day you had.  I wish the doctor would have explained everything to you a bit more.  I know nothing of these things, but I wish I had some answers for you.  My DH had the same reaction once we found out we had to go on injections and IUIs.  It takes a bit for it to sink in for everyone, but the men take a bit longer.  ((hugs))
  • image ColindaP:

    Sounds to me like your doctor doesn't have very good social skills if you left that confused. I would recommend asking for a follow-up appointment to clear up all your questions. DH and I did this. When we got the super low AMH diagnosis and he started talking about IVF, he gave us a very general overview - but he is awesome at explaining things, so it was understandable. We went home, digested the shiit news, and started coming up with more and more questions as we researched some more, adn went back in for an hour+ follow up in which we really gave him the 3rd degree about EVERYTHING.

    I highly recommend this approach.

    And yes, PGD is part of IVF. You guys definitely need a sit-down consult with him to go over all of this in more detail, when your heads aren't spinning. I, too, can get pregnant easily but just not keep them, but IVF is the recommendation for me too. But I got a good, solid, coherent explanation of why. 

    Thanks Colinda!  We are planning on sitting down with him after we get the karotyping back.  By then, I hope to have done more research and have a list of things that I want to know about.  Also, if you don't mind, what kind of tests did you run before coming to that conclusion?  I feel like we haven't run enough tests to come to that conclusion yet.  We've done karotyping, CD3 workup, NK killer cells, antiphospholipids testing, and the thrombophilia panel.  I don't even think that's the whole RLP.  And shouldn't they look at my eggs at some point to see if they're quality or something?  But, my RE has a medical degree and I don't! 

  • image surfergirlkona:
    ((hugs)) I am so sorry for the day you had.  I wish the doctor would have explained everything to you a bit more.  I know nothing of these things, but I wish I had some answers for you.  My DH had the same reaction once we found out we had to go on injections and IUIs.  It takes a bit for it to sink in for everyone, but the men take a bit longer.  ((hugs))

    I read your post earlier.  HUGS to you too!  I just wanted him to say, "We'll do whatever we need to."  He's being sweeter now that he's seen how upset I am, and I know ultimately I'm sure we'll do what we have to do, but I want us to be on the same page!

  • image bbhalphen:

    image surfergirlkona:
    ((hugs)) I am so sorry for the day you had.  I wish the doctor would have explained everything to you a bit more.  I know nothing of these things, but I wish I had some answers for you.  My DH had the same reaction once we found out we had to go on injections and IUIs.  It takes a bit for it to sink in for everyone, but the men take a bit longer.  ((hugs))

    I read your post earlier.  HUGS to you too!  I just wanted him to say, "We'll do whatever we need to."  He's being sweeter now that he's seen how upset I am, and I know ultimately I'm sure we'll do what we have to do, but I want us to be on the same page!

    He will be on the same page sooner then later.  ((big mushy hugs to you))  

  • I'm hopeful your doctor was cart-before-horsing with you -- in giving you a solution, but the biggest and most invasive solution -- but that if your karyotype reveals no problem, you can back away from the PGD, maybe?

    I don't know.  I'm sorry.  That sounds really overwhelming and is so far out of my specialty territory that I can't even give advice. 

  • image bbhalphen:

    Thanks Colinda!  We are planning on sitting down with him after we get the karotyping back.  By then, I hope to have done more research and have a list of things that I want to know about.  Also, if you don't mind, what kind of tests did you run before coming to that conclusion?  I feel like we haven't run enough tests to come to that conclusion yet.  We've done karotyping, CD3 workup, NK killer cells, antiphospholipids testing, and the thrombophilia panel.  I don't even think that's the whole RLP.  And shouldn't they look at my eggs at some point to see if they're quality or something?  But, my RE has a medical degree and I don't! 

    I did not have a CD3 workup b/c my doc uses AMH instead of FSH - both are ovarian reserve blood tests. I had the RPL panel run twice, all came back normal. I had an HSG - normal. Karyotyping - normal. DH's SA - normal.

    The only thing that came back abnormal was my AMH, it was super duper low. Low AMH indicates low ovarian reserve (roughly speaking, low AMH is the same thing as high FSH). My doc also did an u/s to get the lay of the land, and determined that in spite of my super duper low AMH, my ovarian volume (size) is normal and my antral follicle count was 15. Low for my age (normal would have been 25-30), but not as dismal as my dirt-level AMH level would have suggested. All of this leads him to believe egg quality is the issue, and that is why he suggested IVF. He basically said they can do in 2 months what my body might do in 2 years - get a whole bunch of eggs and pick only the best of the bunch to work with. There is no direct test for egg quality. None of the tests he performed indicate anything *directly* about egg quality. But the combination of results lead him to think that egg quality is my problem. There's also the fact that, in hindsight, it's now quite obvious that my mom had the same problem, there were just no tests for it 30 years ago,and diminished ovarian reserve has an epigenetic link; in other words, my mom's diminished ovarian reserve means she had low estrogen levels, and low estrogen levels during pregnancy lead the female fetus to develop with...you guessed it, diminished ovarian reserve.

  • image ColindaP:
    There's also the fact that, in hindsight, it's now quite obvious that my mom had the same problem, there were just no tests for it 30 years ago,and diminished ovarian reserve has an epigenetic link; in other words, my mom's diminished ovarian reserve means she had low estrogen levels, and low estrogen levels during pregnancy lead the female fetus to develop with...you guessed it, diminished ovarian reserve.

    Does that mean that when you get pregnant with a girl they'll give you something to boost the amount of estrogen you produce?  Actually, you'd take it during pregnancy no matter the sex, right?  Because your body doesn't produce different amts of hormones depending on the gender of your fetus.  If you take estrogen during your pregnancy does that mean that your daughter might not have to deal with these issues when she grows up?


  • I'm so sorry Betsy. I can't believe you had to sit there that long. Maybe you could call the office with questions and a member of the staff could talk with you? ((((((big hugs)))))))

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  • I'm so sorry.  What kind of PCOS meds are they giving you?
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  • image ColindaP:

    I did not have a CD3 workup b/c my doc uses AMH instead of FSH - both are ovarian reserve blood tests. I had the RPL panel run twice, all came back normal. I had an HSG - normal. Karyotyping - normal. DH's SA - normal.

    The only thing that came back abnormal was my AMH, it was super duper low. Low AMH indicates low ovarian reserve (roughly speaking, low AMH is the same thing as high FSH). My doc also did an u/s to get the lay of the land, and determined that in spite of my super duper low AMH, my ovarian volume (size) is normal and my antral follicle count was 15. Low for my age (normal would have been 25-30), but not as dismal as my dirt-level AMH level would have suggested. All of this leads him to believe egg quality is the issue, and that is why he suggested IVF. He basically said they can do in 2 months what my body might do in 2 years - get a whole bunch of eggs and pick only the best of the bunch to work with. There is no direct test for egg quality. None of the tests he performed indicate anything *directly* about egg quality. But the combination of results lead him to think that egg quality is my problem. There's also the fact that, in hindsight, it's now quite obvious that my mom had the same problem, there were just no tests for it 30 years ago,and diminished ovarian reserve has an epigenetic link; in other words, my mom's diminished ovarian reserve means she had low estrogen levels, and low estrogen levels during pregnancy lead the female fetus to develop with...you guessed it, diminished ovarian reserve.

    That's a lot to take in!  I hate that we have to go through this stuff. Why can't it be easier?!? 

    I had low FSH and high LH, I believe.  That's why I was getting so many super dark OPK tests-false positives. 

    They haven't tested my follies yet. 

     I understand what your RE is saying about 2 months vs. 2 years.  Maybe that's kind of what mine is trying to get at.  And Lord knows, I don't want to go through multiple miscarriages another 2 years.  I can't wait until my karotyping comes back and we can really sit down and talk. 

    I really appreciate you taking time to answer my questions and explain it to me.  Thank you so much!

  • image grr_aargh:

    I'm hopeful your doctor was cart-before-horsing with you -- in giving you a solution, but the biggest and most invasive solution -- but that if your karyotype reveals no problem, you can back away from the PGD, maybe?

    I don't know.  I'm sorry.  That sounds really overwhelming and is so far out of my specialty territory that I can't even give advice. 

    Thanks, I hope so too!  The only thing is, though, I think he was saying we'd do the PGD if my karotyping didn't reveal any problems.  I'm not expecting it to, so we'll see!

  • image mdm2137:
    I'm so sorry Betsy. I can't believe you had to sit there that long. Maybe you could call the office with questions and a member of the staff could talk with you? ((((((big hugs)))))))

    Thanks Misty!  I go back after I get my karotyping to sit and talk with them.  Hopefully that will be sooner and not later! 

  • image KristysRedBarn:
    I'm so sorry.  What kind of PCOS meds are they giving you?

    Extended Release Metformin-I know you're on it too! Stick out tongue Crazy the personal things we know about each other!

    They also talked about maybe Clomid or something. 

  • Sorry you had to sit there for so long - I would have gone out of my mind.  I hope you can figure out a good plan soon  Good luck!
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  • I am so so sorry.  Can you call the doctor back and ask for clarification?  Reading a pamphlet is great but hearing from the doctor is better.  GL  ((hug))
  • Scout05Scout05 member
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    What the hell?! What a crappy way to treat you.

    PGD is part of some IVF cycles, where they do a preimplantation karyotype of the embryos. But my understanding is that they would do that - it adds significantly to the cost - only if there IS a transolcation found on your or DH's karyotype.

    If your b/w is normal, why would this be on the table?

    I don't blame you for being confused, I am too.

  • image ambrandau2:

    PGD is part of some IVF cycles, where they do a preimplantation karyotype of the embryos. But my understanding is that they would do that - it adds significantly to the cost - only if there IS a transolcation found on your or DH's karyotype.

    If your b/w is normal, why would this be on the table?

    I don't blame you for being confused, I am too.

    My thoughts exactly.  Although I will say that my dr. suggested it as a long-term treatment plan, even though our karyotypes were normal.  The idea being to make sure that the embryo they're implanting is normal to at least reduce the odds of m/c due to chromosomal abnormality.  And this would be a reasonable suggestion if the eggs or sperm have abnormalities other than translocations, like DNA fragmentation in the sperm, or eggs that don't go through meiosis normally for whatever reason. 

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  • kew243kew243 member
    I'm sorry your day was sooo LONG!  That is crazy!  What a nightmare to wait for results and then you leave confused.  I am sorry!
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  • I know I'm a little late...but for what it's worth....

    Per the ASRM (American Society of Reproductive Medicine) 60-70% of women with recurrent pregnancy loss go on to have successful pregnancies.  IVF with PGD is not currently indicated for this unless there is a known parental translocation.  Plus PGD actually decreases your IVF success by about 50% because of how invasive it is on the embryos.  Just make sure you do your diligence before you decide.  Get a 2nd opinion if needed.  After my 3rd loss and a completely negative workup, I did clomid + baby aspirin + progesterone supps.  I was lucky to be in the 60-70% of women who do have a successful next pregnancy.  I've got my fingers crossed for you.

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