Valentines 2015

Valentines 2015

Tuesday, January 26, 2010

The Second Opinion. . .

Our insurance doesn't cover infertility, so we pay cash out of pocket for all of our procedures. We have been with our current RE for about 8 months now. She has worked some miracles in that time. She immediately identified my Stage IV Endometriosis on ultrasound, and had me scheduled for laparoscopic surgery to have it removed (or at least "cleaned up") a week later. AND, who can forget that she has gotten me pregnant twice in the last six months. BUT. . .

She has a tendency to be a bit "sloppy" for lack of a better word. My first pregnancy occured after a Follistim IUI cycle where I produced 12 mature follies by the time of the trigger. I got pregnant, but I also developed OHSS and had to be hospitalized because my kidneys decided to essentially shut down and stop producing urine. So that was fun. That was followed by slow increasing HCG levels and no sac or baby on ultrasound at 5 & 6 weeks, and a mass in my left tube instead. Ectopic pregnancy. Awesome. I told my RE I would prefer to have surgery to have the baby removed instead of taking methotrexate to kill the baby (and not be able to try to get pregnant for at least 3 months). Well, my RE didn't do either one. Instead she decided to wait and see if my body would absorb the baby on it's own. Well, it didn't. I had to have emergency surgery at 7 weeks. Awesome. Lost my right tube. Notice the mass was in the left side, but my right tube was the one that tore? Interesting!

Anywho. . .so I lost my right tube. At that point my RE suggested that we move on to IVF. So we did, the very next cycle. Stimming went well, ER was quite painful, but was successful, with 21 eggs retrieved. 14 Fertilized. We transferred 2 beautiful 3 day embryos. Beta 10 days later. BFN (Big Fat Negative = not pregnant). Never fear, we had 10 frozen embryos left over after our fresh transfer! So, the following cycle we did a FET cycle. My RE thawed ALL 10 of the embryos. Apparently she thawed 6 first and two didn't survive the thaw, so she decided she should thaw the other 4 as well (without asking me mind you). So, we had 8 living dividing little embryos. She was growing them out to day 5 or blastocyst stage. Only 2 of the 8 made it to blast. . .but all 8 were doing just peachy at day 4. Anyway, we transferred two blastocysts, and BFP (Big Fat Positive = we got pregnant!). We were ecstatic! My HCG numbers were increasing appropriately, and the ultrasound showed that the baby was in the right place - YAY! BUT. . .there is always a but with us. . . no yolk sac, fetal pole, or heart beat ever developed. We were diagnosed with Blighted Ovum. I had a D&C at 7.5 weeks.

If you read my MTHFR post (or my history post) you know that at this point I had to argue with my RE to try and get her to complete extra bloodwork. She simply straight out refused. So, I had to go to my OB. My OB ran the bloodwork, and it came back that I was compound heterozygous for the MTHFR gene mutation. My OB provided recommendations that I sent to my RE. . .no response. I called her nurse to set up my upcoming IVF cycle and asked her nurse about the results/recommendations. Still nothing. So I decided to seek out another RE for a second opinion to make sure my RE was on the right path with Si and I. My aunt used a RE in Colorado and she loved him, so I contacted him. He did a phone consult with me on Friday. He had a couple of suggestions. . .

He noted 2 concerns he has for Si and I and would test if we came to his clinic.

1- He noticed that we had a large number of embryos at day 3, but very few at day 5 blast stage. It could be due to the fact that the embryos had been frozen prior to growing to blast stage, OR, he thinks there may be an issue with Si's sperm DNA - and recommends a Sperm Chromatin Assay be completed. If that is the problem, it's an easy fix (antioxidants and something else) - although it takes 4-5 months of total treatment to see results since it takes 90 days for the body to make new sperm.

2 - He said I am a VERY high ectopic risk with my endometriosis and previous ectopic history. He must have asked me 10 questions about my ectopic - what happened, how it was diagnosed, how my other tube looked, how much blood there was, etc.. He told me that in patients with severe endo it is very rare for the tubes not to be severely diseased as well. He would like to do a HSG (or have my OB here do a HSG) and see if I have hydrosalpinx (sp) in my remaining tube. His thought process was that since I have had a pregnancy since my ectopic, there could be fluid gathered in my remaining tube (from the endo I think) that could leak down my tube into my uterus and would be toxic to embryos placed in my uterus via IVF. He also suggested that it may just be in my best interest to have my one remaining tube removed at this point, because it is likely causing more harm then help.
However, my research shows 2 things - 1 - hydrosalpinx can be identified and diagnosed via ultrasound. There is no reason I should need to have to such an expensive test (HSG) to determine if I had hydrosalpinx. 2 - hydrosalpinx usually takes a little while to develop. My RE has been rooting around inside around my tube twice in the past 6 months. . .and I have had two HSG's in the last 18 months. I think the probability hydrosalpinx is the problem is very low. BUT, I could ask my RE to check my tube when she does my clearing ultrasound on Tuesday prior to the IVF stimming.

So the question is, do we do the sperm testing the 2nd RE recommended prior to our next IVF cycle? He said that it wasn't necessary to do the testing before going through with my already scheduled February IVF, he just said that if we were his patients, he would do the testing. SO. . . what would you do? Think we should do the testing? Keep this in mind. . .

I am a hurry up person and always have to be on to the next plan ASAP. I hate waiting. . .and really with pregnancy, I don't think I can wait. That's the double edged sword part of this. . . the endo has to be treated/managed quickly or it will return quickly (yes, like within a couple of months). . . pregnancy pushes endo into remission. . . subsequent surgeries to repair endo are not nearly as effective as the first endo removal. SO, I have to be speedy and try to get pregnant, or endure more surgeries that won't be nearly as useful in returing fertility as the first one was (in June). The other option is to take birth control - which is is the other side of the sword. With the MTHFR I can't take birth control for any extended period of time as it will increase my risk of heart attack, stroke, DVT (blood clots), etc. SO, time is of the essence and I don't really have much time to wait. The fact that I have been pregnant twice since June actually helps my case, but I still need to be speedy with this stuff. So although this may seem rushed, it's really out of necessity rather than me just wanting to rush into things. . . conversely, I suppose I could take lupron (which would put me into drug induced menopause - YUCK) if they found that Si's little swimmers had the DNA issue. . . hmmm. . . .

I guess I'm not really as concerned about the money at this point (which I think may have been what I was originally concerned about - paying MORE money out of pocket for testing). Actually right now I am actually thinking - at what point do you stop and just say - if this is supposed to work, God will find a way to make it work? I mean, I can do testing from now until next year, and they can find a ton of stuff wrong with both of us (we were considering visiting a Reproductive Immunologist in Chicago as well for additional immunology testing). I think we need to back off. . .that's my gut instinct. Why God thought I needed to hear the second opinion on Friday I'm not really sure. But I don't think we are supposed to do the additional testing right now. I know we will be blessed with a baby - I KNOW we will . . I don't know when or how we will be blessed, but I just have this feeling we will. So I will keep doing what I am doing, and if it isn't supposed to happen it won't! There I go throwing my gut back into things - LOL!!!

I welcome your thoughts though. . . what would YOU do?


  1. That's a lot to think about. I'm curious to hear what your RE will tell you when you are face to face and you bravely tell her your frustrations and 2nd opinion. I wonder if she will have other information for you about MTHFR and treatment or how quickly she thinks your endo is progressing, what your tubes look like and what she thinks of the whole fluid in the tube thing, as well as a DNA sperm analysis. If she's the one in charge of your care - it makes sense that she should lead the way. But it also makes sense that you tell her how you feel and what you've come across.

    I support your gut instinct. No way can I put myself truly in your shoes, but if my gut said to wait and test I would. If my gut said, go ahead - I would go ahead. And my gut won't speak for your gut!

  2. Hi Megan, I'm more than happy to share about the DNA testing and yes it is the same as the chromatin testing. Hammer and I have had a similar experience where we have great looking embryos up until day 4-5 when they all start arresting and then it's a mad dash to transfer those surviving. We also had a blighted ovum at 7 weeks with IVF#2 and feel that DNA had to do with it. Our RE was willing to help us do the test but he really did not know much about treatment. Since I am a dietitian I told him just to get us tested and I would do the rest. So we are planning IVF#3 5 months from Hammer starting the antioxident protocol.

    The test was simple. We were sent a box with dry ice the day of the collection, put the sample in the tube, dropped it off at UPS and waited 12 days for results. 0-15% fragmentation is normal, 16-30% is subfertile and >30% is infertile requiring antioxident therapy. So Hammer was 48% which requires IVF/ICSI and antioxident therapy. It explains our lack of pregnancy over the last 31/2 years as well as our poor IVF outcomes. We are praying this last attempt will be successful. If you have more questions just let me know :)

  3. If there is one thing I've learned, it's to go with your gut and make the best decision possible. At one point, my hubs and I sat down and wrote out the pros and cons of each treatment and decision. If you feel like she's sloppy and you're unsatisified, it's okay to be your own BEST advocate and find another RE. It's business...not personal.

    I, too, only have one tube. So, I completely understand what you're talking about. Of course, having had one ectopic already, I'm sure they've told you that your chance of having another is higher. Although I completely understand what the doctor was saying about having the other tube removed, I actually asked two diff. doctors that question and they told me that it would do more harm than good - causing possible scar tissue.

    We're moving forward with our first IVF cycle after trying o'natural and 2 attempts using clomid. We found a great deal, a shared risk program, that is only costing us $13,500 (yes, which is alot) for three tries! If it doesn't work, and we don't walk away with a baby, we'll get 80 percent of our money back. There also might be universities that have research programs that may help provide financial assistance.

    It doesn't hurt to have that sperm test. I think it's important to get that out of the way, so you won't always wonder if there was a prob. You'll know. Sometimes just knowing is half the battle. We have enough unknowns, ya know?

    Good luck with everything! Thanks for following my blog. Stop by any time and good luck! You'll be in my thoughts!

  4. Thanks all for your comments and thoughts! They are most appreciated=).
    Sheila - I''m with you - I am quite curious to see how my RE responds to all of this and what her recommendations will be. I'll find out Tuesday won't I?!
    Hammer - I get the impression that most RE's don't know what to do with the sperm chromatin assay results, which concerns me as I definitely am not an expert and wouldn't know how to treat it either! Brilliant that you are a nutritionist and could figure out exactly what your DH needed to do! Thank you so much for sharing your information with me!
    Sassy - interesting that your docs had the opposite opinion about removing your other tube. Hmmm. I am curious to see what my current RE's thoughts are on that. And I definitely understand about advocating for myself. That's the only way I have gotten anything accomplished with my infertility! Thanks for your comment! Oh, and I'm a FT gal as well - Feb IVF - so I'm tracking you there as well=).

  5. Wow! That was one long blog posting! Ha! I had NO idea how complicated this whole IVF thing can be! At least when Matt and I have to go through it we will have your expert opinion about this whole thing=) I wonder how much more complicated having to do all the gene stuff will be. I already called the gene people here in Omaha to set up a time for Matt and I to get tested. I want to know how much all this stuff is going to be before I start spending money on a wedding. I want a nice wedding, but I want kids even more. So we will see.

    I'm glad you are going for it again. I think you and Si are amazing people and will be great parents. Looking forward to hearing GOOD news this time around via this blog:)

  6. Meg, did your RE freeze the embryos before they got to blast stage - did i read that right? I thought that all RE's waited to kinda "weed" out the ones that wouldnt survive the thaw. Interesting......


Thanks for sharing your thoughts with me!