I didn’t have high hopes going into my discussion with Dr. B. In my heart I knew that we wouldn’t undercover the reason for my recurrent pregnancy loss and I knew that he wouldn’t have any sage advice as to where I should go from here. I had secret hope that I was wrong, but once again I was right.
I hate when I’m right.
Dr.B started this discussion in the exact way he started our last one. A feeling of deja-vu washed over me and I realized that I was about to hear the same exact thing that I’ve heard before….and…. yup…that’s exactly what happened.
Dr. B dove right into the same analogy he used the last time, explaining that our eggs are like encyclopedias made up of thousands and thousands of parts. That the only way to tell if every word is accurate is to go through it page by page and word for word; not missing a single portion in the entire collection of encyclopedias. Our embryos, just like encyclopedias, are made up of thousands of parts and technology hasn’t fully evolved enough to make sure that every little bit of the embryo is flawless. The process of CCS is like if we were to check random words on randoms pages to make sure the encyclopedia is accurate. You wouldn’t get the whole picture and could miss a typo or the wrong spelling and the encyclopedia wouldn’t be accurate; a small part would be inaccurate. Just like CCS or PGS doesn’t really get the entire picture as they can’t test the entire embryo. So, CCS could be mis-leading and tell us that an embryo is fully functional when in fact it’s not.
That folks…is the encyclopedia analogy. It comes with a drawing as well.
It’s frustrating…not that I’ve already heard this analogy last time, but that this is completely different from the spiel I got when deciding if I should go forward with CCS. I know that with unexplained infertility there are no answers and I’m ok with that, but I was told in the beginning that my issues are more than likely because of chromosomes and CCS will solve all my problems. I honestly believed that IVF with CCS would be my magical unicorn and I would ride off into the sunset with my baby…how naive.
It all went downhill from there. I was told that we could try IVF with CCS again or try donor eggs or look into surrogacy. All very different scenarios. All very expensive scenarios. All scenarios would be great if we knew what the issue was, but we don’t. That makes choosing one of these scenarios very difficult.
If we were to use donor eggs that would mean that it’s not my body, but my eggs. We haven’t determined that is the cause of my miscarriages and nothing is really pointing in that direction. My AMH has bounced around little over the past three years and has ranged from +1 -3. From what I can tell and what the doctors have said is that my levels are within the normal range. So how would using donor eggs solve my problem?
Surrogacy…wouldn’t using a surrogate suggest that my eggs are good and it’s just my body? So each scenario contradicts the other, how pleasant. Plus, this is super expensive and I am not to this point in my journey. Unfortunately my hubby is here and this has caused a lot of arguments between us, but more on that another day.
When I brought up meeting with Dr. Kwak-Kim in Chicago Dr. B scoffed at the idea. He doesn’t believe in her processes and thinks the protocols can be dangerous and a waste of money. His reasoning is that only a few clinics do immunology protocols for RPL and it’s not a proven theory. These clinics don’t report to SART and therefore there is no evidence that they work. However, I believe that it can work and I don’t want to look back regretting that I didn’t do everything possible. From what I took from the conversation is that Dr. B wouldn’t be willing to work with whatever protocol Dr. Kwak-Kim may give me, and I’m not ok with that.
Another thing i’m not ok with…when I talked about wanting to do something different for my next FET he didn’t agree. My doctor believes that his job is to get me a positive pregnancy test and he is doing just that. I am getting those two pink lines and that is the goal of IVF. Dr.B wouldn’t change a thing with my FET protocol because I am getting pregnant.Umm, hello i’ve never had an issue getting pregnant… He said if I wanted to try blood thinners we could throw that in the mix, but that should be the only addition. He also mentioned an antihistamine as another patient is trying that, but I’m not sure that has anything to do with my case. But, this is not enough for me, I have seen those two pink lines six times and still don’t have a child. To me, that means something needs to change.
I walked out of our discussion discouraged, heartbroken and not even one step closer to the end of my infertility journey.
My takeaway from the appointment is the realization that IVF doctors are there for women who never see those two pink lines, they are there to help them achieve a pregnancy. Once a pregnancy is determined they are ready to hand you over to your OB. It is not up to them to keep you pregnant. Obviously they want the live birth percentages to be high so they will do what they can, but they won’t go above and beyond to fix the problem. For someone like me with repeated pregnancy loss I need someone to help me fix the problem. I need someone who will help me do whatever it takes and to not make me feel like my body is failing me…..I already know that.
So, where do I go from here.
My first step is to find a new RE and possibly new clinic. Dr. B is one of the best doctors at his clinic, but I don’t feel fully supported or that he is involved enough in my situation. While I do realize that IVF doctors are very busy and see a lot of patients I want to feel important and at the moment I don’t. I am going back and forth between CCRM or finding another doctor at ORM. While I wasn’t as impressed with CCRM as I thought I would be; I did like Dr. K a lot and that has to count for something.
When looking at statistics on the SART webpage CCRM is slightly higher than ORM, but not by much.
Not sure what difference the small percentage can make, but for me it’s a check in the CCRM column. Not only am I making a pro & con list as to where to go and who to see. But, I am also listening to what my heart and gut are telling me. Right now they are telling me to find a new clinic. My hubby doesn’t fully agree with that, but he is on board for whatever I decide. ORM may be the cheaper and logistically more sound choice, but I feel that they aren’t giving me what I need. I’m not even sure that CCRM can do that either, but I should at least find out. I don’t want to look back regretting that I didn’t do everything I possibly could.
The one thing that I do know is I will be meeting with Dr. Kwak-Kim in Chicago to see what she has to say about the situation. While some doctors may not believe in her protocols I believe that it’s worth the money and time.
I am frustrated that it’s three years later and I find myself in the same position with nothing to show for all the money spent, the appointments attended, the pregnancies had, and the injections done. I am frustrated that I don’t feel my doctor is invested in helping me achieve a full term pregnancy and that I am once again on the hunt for a RE and/or clinic. I have come to accept that I will never know what is causing my miscarriages and I’m ok with that as long as I can find a doctor who will work with me and help me do whatever it takes to bring home a baby.