A Long Overdue Update

HI!

It’s been a minute. My absence was purely due to either being insanely busy at work again or spending all my free time on the couch and I don’t think a running commentary of either was blog worthy.

But finally, movement on our side again which is great. IVF really is like sitting in traffic. You’re either completely at a standstill or you’re speeding through a cycle. There’s no happy medium. But I digress.

We had two appointments these past two weeks. One with the third urologist. Touted the best urologist this is side of the Miss’ipi (always wanted to use that line, not sure if I’m using it correctly). And the second with a new reproductive endocrinologist to get a second opinion.

When last I left off, I said that our previous RE had pretty much run out of ideas and was unwilling, at that stage, to move forward with another cycle until we got more answers and a possible second opinion. Our last cycle was a horrendous failure so we all agreed this was for the best.

Urologist:

This day was a mess. For some reason everyone in Boston was on the road and no one could get anywhere. N left the house at 5am to be at their clinic to do an SA at 7 and he was about 15 minutes late due to traffic. Our follow up would be 10:30 to discuss results. Thankfully, after the SA the nurse told him a lot of people hadn’t shown up and they’ll push our appointment to 9. So I rushed out of work at 8 (a mere 30min drive to Boston from my office) and only got to the clinic around 10!! And the doctor STILL only saw us at 10:30. geez!

Anyway, he seemed nice enough but I can’t say that I liked him very much. I won’t deny that he knows his shit though. I went into appointment with high hopes. I spoke to someone a few days prior whose husband had azoospermia and they did a TESE and got 6 vials! I was excited. I thought we’d won the world cup. Of course this wasn’t the case. The doctor was long winded in his explanations and he lost me a few times so some of this information might not be 100% accurate but this is what I got from that appointment.

  1. All the vitamins and supplements we’re taking aren’t doing anything, we’re wasting our time
  2. The Anastrozole N is taking for his count isn’t going to work. It affects a hormone that won’t increase count if that hormone is at the level it’s supposed to be (if that makes sense).
  3. TESE is not a viable option for us because there is sperm in the ejaculate. TESE is reserved for men with azoospermia or a blockage, so no sperm in the ejaculate.
  4. The sperm you have to work with is what it is. Good luck. Try a donor maybe because I see here your eggs are crap too.
  5. GTFO with your shitty sperm and eggs.

Okay so he wasn’t that harsh but it was hard to hear all my hopes get shot down one by one in an hour long conversation. The good news is that at our last retrieval they couldn’t really find anything to work with in N’s fresh sample, that’s why they used the backup sample and that day at the appointment his count was up to what it usually is. We suspect that it was the fact that he has strep throat about a month before we started the cycle but the doctor didn’t think so. I guess sperm just fluctuates and that retrieval day was a bad day. Another good thing is that N has to do another back up sample at our clinic so Dr O said he wants to get the notes of that sample and see if it’s worth using or if he should do another one. That way we’ll know that the backup sample is good if it’s ever needed again.

So that appointment sucked. It sucked a lot. I almost gave up. I didn’t speak to N much when we left and I feel bad about that but I didn’t know how to react at the time. I told all my friends and family that it’s not looking good for us. We’re not at the point where we want to consider donors yet and to have 2 doctors suggest donors was so hard. I cried a whole lot. I also felt like I was being a spoiled brat. I admire women who have gone the donor route. I think it takes courage and selflessness and I also felt like they deserved to be mom’s more because they wanted it more than anything. And here I am crying over the fact that I may never see what my husband and my children will look like. If they’ll have his light brown eyes or my curly hair. If they’ll have his laugh. If they’ll be loyal friends. Will I have to start them early in group activities to help with the shyness both of us struggle with. It was the first time I was really faced with the possibility of this dream not coming true and it scared and angered me. Having that dream slip through my fingers.

I cried most of that day during work and when I got home. I spoke to my husband and he said he didn’t think Dr O would have all the answers. He basically said that a urologist wasn’t the end all and be all. We’ve made embryos before, we can do it again. We just have to keep trying and we’re not out yet let’s see what the new RE says.

Over the next few days I was torn between putting all my hope in this new RE and thinking of what life will be like as a childless couple. When the appointment rolled around I was a mess with nerves. When we sat down he said that he wanted to go over our history and discuss some options and just the way he said it my heart sink. I thought this is it. I’ll never get to meet our biological children.

Reproductive Endocrinologist Second Opinion:

The appointment was at our regular clinic just with a new doctor. I kept seeing pictures of our previous RE and had to laugh at my misplaced guilt. I couldn’t look the pictures in the eye.

Dr P… I couldn’t get a read on him. He barely cracked a smile during the entire consult and I prefer that people at least smile when I deliver my funniest one liners. But nothing. He was soft spoken and spoke kindly and explained everything perfectly. So while he was very serious, he was everything you would need in a doctor. I often say that I don’t need a doctor to have good bedside manner as long as he got the job done I was a little bummed that her never smiled. I know this is crazy but I kept thinking that he was judging us for jumping ship with our old RE. Of course this isn’t the case based on what he was saying. Let me get right into it. There’s a lot of information and I forgot to write everything down.

  1. He is on board with vitamins and supplements and even wants us to increase Ubiquinol as it could help with embryo quality. This is huge to me and N. I know these things maybe probably don’t affect quality/quantity but I really don’t like when doctors dismiss them completely. It just bothers me.
  2. The fact that we’ve had 2 normal embryos in 4 cycles is pretty awesome considering our diagnosis. And we’ve made embryos before, we could likely do it again (note hubby’s words above)
  3. The fact that 2 normal PGD tested embryos (that have a 70% chance of attaching) had no implantation is a little baffling to him and it could be one of 3 things. 1. The labs effed up. 2. Something wasn’t picked up in the genetic screening. 3. something is up with my uterus.
  4. points 1 and 2 are unlikely since it happened twice. At least one of those embryos should have attached. So he’s interested in my uterus. I’ve had 2 HSG’s and 1 endo biopsy and everything is normal. So his next likely suspect is Progesterone. Dr G used vaginal progesterone which he thinks isn’t sufficient so he wants to try the PIO shots (Yay!). He also wants to know if maybe the amount of days I’m taking the progesterone is enough. Typically, you’re given about 15 days of progesterone and sometimes for some women that’s either too much or too little. To find out the answer to this question we’re going to do and ERA test (double yay!)
  5. You can find out about an ERA test here. But just a quick rundown. After our next retrieval cycle we’ll do a mock FET cycle with meds and then instead of a transfer we’ll do an endometrial biopsy (yuck!) and send the sample off to the lab in Spain. If it comes back “normal” then perhaps that means the PIO shots are working. If it comes back pre-receptive then we’ll add a day of Progesterone when we do the next transfer. Now from what I’ve read it sounds like you have to keep doing this test until you get a “normal” result. Dr P said we would only do it once and go from there. It makes sense and I really don’t want to keep paying for a test if we don’t have to because it’s not covered by insurance and will run us around $800-$1000. But yes we are on board and ready to go!
  6. I can’t remember if I have this right but I think he said that if the test comes back pre-receptive then we’ll add another day of PIO but if it comes back normal and we have 2 embryos to transfer, he will consider transferring 2. They typically do not transfer more than one PGD normal embryo but he thinks this could be an option.
  7. He doesn’t want me to do a lap to rule out endo. All these doctors seem to think that I am endo free. I was going to fight him on it but he said that there aren’t enough studies out there that say that removing endo will get you better quality eggs. I guess it depends who you ask but I won’t push the issue. He also said that since I’ve had 2 surgeries in that area (appendectomy and ovarian cystectomy), the doctors would have said something if they’d seen something. Granted there’s a chanced they didn’t see anything if they weren’t looking, but my cystectomy was a full laparotomy so I was completely opened up, it’s unlikely that surgeon missed any endo. I could of course go and search for those surgery reports to find out but I’m not sure it’s worth it and the surgeon who did my cystectomy has since passed away and those records are in South Africa somewhere. That would be a mission. So we’ll put a pin in this one for now.
  8. I did ask (and I’m so proud of me for asking everything) if whether he thought that foregoing PGD testing was a good idea. My reasoning being that we have so few embryos and I read one lonely article that said that some embryos self-correct and it made sense to just transfer what you have and pray for the best. He said that since we have a balanced translocation that most affected embryos would end in miscarriage and he wouldn’t want me to go through a miscarriage and also some miscarriages are more dangerous than others. So fine, that makes sense. I just thought I’d ask.
  9. If we get insurance consent in the next two weeks (fingers crossed) we can start our next cycle. We’re going to go back on the antagonist protocol with 300 Gonal-f and 150 Menopur. He said I respond well with this mix. And I think on this cycle we got 11 eggs and all of them fertilized. I’ll have to check my notes.
  10. His nurse is great I love her already but I’m so very sad to be leaving my nurse. Like really extremely sad. I never realized how important these people become.
  11. I have to come to terms with the fact that we are not ever going to have more than 3 embryos to test. He sounds like that’s the nature of the game with our diagnosis. It’s not great but it is what it is. I have been distraught because we start with double digits in egg counts and then have 3 or less measly embryos. I think if I just focus on a goal of 3 and make sure that I stay healthy to try and get the best 3 that there ever were, then we’ll be okay. Actually 3 to test isn’t a goal to focus on. I need to focus on 1 healthy normal embryo. I’m going to work hard for 1 healthy normal baby. That I can do.

Final thoughts:

A really good IVF friend recommended Dr P. She actually pushed me so hard despite my best efforts to resist change. I will forever be grateful to her for pushing. We both liked him a lot and I’m back to dreaming about who our children will look and be like. I’m beyond excited to start again. I just did the math and if everything goes swimmingly we will only be transferring around April (yikes!) which feels like forever away but at least things will be happening and balls will be rolling. I’m also scared. Knowing that our embryo yield isn’t going to be fantastic scares me. We only have 3 rounds left on insurance so we’re getting to do or die time. That thought is scary. But for now, excitement is winning.

This post was really long but I had a lot to cover. Thanks for reading if you made it this far. I hope to not go into radio silence again until we actually do start again. Maybe I’ll do something exciting this weekend.

Until we meet again,

XX

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19 thoughts on “A Long Overdue Update

  1. I so think you have a great plan here. I did two ERAs just because I’m scared to move forward honestly and I just love wasting money. Ha. But anyway, I think this is great and PIO makes a lot of sense too. I am really crossing my fingers for you! Good luck and hope to hear of your progress.

  2. This is a good plan! I know how stressful this is especially if you know you have 3 more rounds on your insurance. But I have faith in this plan. So good to read your post again!

  3. Sorry the Urologist didn’t go well, but sounds like the new RE is going to work insurance comes through for you so that you can get started soon. I wish you the best of luck with your new plans, and that your lucky, sticky emby comes along soon!

  4. I laughed at #5: “GTFO with your shitty sperm and eggs.”

    Regarding the ERA – we just finished the second round. After three failed FETs of beautiful, 6-day PGS tested normal embryos didn’t stick, my doctor was under the impression that we need to just keep transferring. We insisted on checking something… anything… because it didn’t make sense. According to the ERA results, we were transferring too early and the lining was non receptive. We repeated the test the next cycle because I wanted to make sure of the right transfer window instead of wasting any more embryos.

    I wish someone would have suggested the ERA sooner, even as part of the prelim testing before IVF. Everyone is so different – how can they just assume one window for transfer is right for every woman?? It was an added expense and an unpleasant experience but totally worth it for the peace of mind and knowledge of what the results revealed. Good luck!!

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