The Meeting (and the due date)

About six weeks ago, Dr. C left me a voicemail: “I’m really disappointed to hear about how things went this cycle. Let’s chat,” he said. I’m pretty sure this was code for the fertility blogger’s infamous “WTH meeting” I read about from time to time (and that’s “What-The-Heck” in case you’re wondering. No swearing here!). I never wanted to go to one of those. So I did what I do best and put it off.

After several weeks of dragging my feet, I finally I got around to calling the clinic back. Even then I took my sweet time, scheduling the meeting out weeks in advance. I wasn’t alone in not wanting to go: Jake sure didn’t, either. He saw no point in meeting with Dr. C, and I understood his feelings. I had this mental image of us walking the walk of shame down the hallway to Dr. C’s office, passing by all the staff who would give us pitying looks because they knew why we were there.

Of course, it went nothing at all like that. Jake eventually warmed up too, and in the end he told me the meeting was actually worth having.

Even though we covered a lot of ground during our 30 minutes, it also felt like we didn’t really get anywhere. I asked Dr. C every single question I’d had during the past nine months. He graciously took the time to answer each and every one. Toward the end of the meeting Dr. C said that, even though I’d given him quite a workout, he appreciated patients like me who come in armed and ready. He also half-jokingly offered me a job in his practice.

drfake3
Stock photos lie. This is not how a WTH meeting looks.

Since you guys know how much I love lists, here’s the highlights:

AMH/DOR/Egg Quantity: My AMH was 0.62 a year ago. I had another AMH panel drawn during my WTH visit. The results will take several days to come in.  Last year, Dr. C conservatively figured that my low AMH could’ve been due to my having one ovary. This year he changed his opinion and said that my score wouldn’t have made a difference, because whether I had one, two, or three ovaries (who has 3 ovaries????), DOR is DOR is DOR.

Egg Quality: Besides my low egg reserve, there’s also a quality issue of my remaining eggs. I again declined Dr. C’s suggestion of using donor eggs. It’s important to me to be biologically related to our child, and using donor gametes goes against my beliefs. After the meeting, this whole egg quality thing had me feeling pretty bad about myself: Did my “bad eggs” make me directly responsible for all our losses? I’m only 34. Aren’t donor eggs something for older women? Why is this even something a doctor is talking to me about?

Pelvic Adhesive Disease: Dr. C kept throwing this term into my diagnoses until finally I had to ask what exactly pelvic adhesive disease is. Here’s the lowdown: Endo adheres your insides together. After surgery to remove the endo adhesions, new scar tissue forms from removal of the endo adhesions themselves. This new scar tissue adheres your insides together yet again, resulting in PAD. It’s like an ever-spinning wheel of adhesive insanity! Of course Dr. C couldn’t prove it diagnostically at our meeting, but the fact that my ovary hurts, oh I don’t know, ALL THE FREAKING TIME makes him think PAD is a culprit, along with recurring endo. Hooray.

Laparoscopy: It makes sense to me—and I said so, too, bluntly—that all this IVF/ART business is like putting a band-aid on a gunshot wound. As long we ignore the endometriosis factor then we’re not really treating my fertility issues, we’re just trying sneaky backdoor methods to get me knocked up. Since IVF is tabled for now (donations welcome!), Dr. C gave me a referral to a local gyn surgeon he highly recommended. This would be my fifth surgery and third laparoscopy. It might seem counterintuitive to have surgery because of the whole PAD thing, but surgery is the option I’m most in favor of. Jake and I have a lot of discussing to do before I make the final decision, since there’s a few things going on in our personal lives with work, school, moving, etc. that might make having a lap a bit tricky right now. We will see. And, of course, I’ll let you guys know!

IUI: I’d always been told that IUI for endo patients is a total waste of time and money. However, Dr. C feels that that’s not necessarily true if the IUI is done soon after a lap. In that case, the endo is gone so it’s no longer a factor. Until we’re able to do another IVF, Dr. C suggested Clomid IUIs with injectables following the lap. It seems like we’d be going backward to move from IUI to IVF back to IUI.  I’m 50/50 about this option, but leaning more toward “no.”

Implantation Issues: This one’s a biggie. Since no one can see implantation happening (or not happening), it remains this mysterious, elusive, intangible thing for doctors. I  walked away from the meeting feeling like I didn’t get a lot of answers about possible implantation issues, as Dr. C couldn’t offer any real solutions. After three losses, Dr. C feels that implantation is definitely a factor to investigate… somehow. But there’s not much to be done diagnostically that I haven’t already done. Basically, the implantation issue went nowhere and I’m not thrilled about that. To be revisited.

MTHFR: Along those lines, we reviewed my RPL panel and Dr. C espoused how unremarkable it was. Here’s where I could use some serious input from you guys: When I asked Dr. C why he didn’t include testing for MTHFR on the panel, his response was (literally), “It doesn’t really make a difference.” This didn’t sit well with me. That can’t be true, right?! Anyone? I mean, there’s entire websites dedicated to MTHFR. I really, really wish that REs took RI more seriously. It’s to their patients’ detriment that they don’t.

Scratching the Itch: Last year I had asked for an endometrial scratch prior to starting IVF. Science is iffy about whether ES helps prime the uterus for an embryo, but it certainly doesn’t hurt (scratch that, it does hurt, physically, a lot. Pun intended) to have the procedure done anyway. He wasn’t opposed to it last year, but Dr. C eventually talked me out of having it done. During our meeting, though, he recommended I have an ES done prior to doing IVF again… You can’t even begin to know the depths of my frustration when I reminded him that I’d asked for an ES last year and we didn’t do one!

The Miscarriages/RPL:  All Dr. C could tell us was that m/c #2 was likely due to an abnormal embryo, and that m/c #3 could have been another abnormal embryo or an implantation issue alone or both. We did ICSI last time around, but not PGS. Dr. C recommends PGS for any future IVFs. I have reservations about the reliability of PGS and I don’t believe it doesn’t harm embryos (science says so, too!), plus I have moral issues about destroying embryos that don’t pass the PGS test. This is one thing I’m really firm on. Since I never had any miscarried embryos to biopsy, there’s no telling. Again, a more thorough RPL panel might have helped here… Maybe one that included MTHFR.

Okay, wow, now that I’ve written it all out it seems pretty clear to me that we need to get a second opinion (or a fourth, really). Dr. C is the third reproductive endocrinologist that I’ve treated with, but I’m not so dedicated to the practice that I won’t get another opinion. REs don’t know how a patient will respond to IVF the first time, and it can take a few cycles to get the right protocol down; I totally get that. I guess the whole purpose of a WTH meeting is to go over things, try to come up with what went wrong, and make plans to change what needs to be changed the next time around.

With that said, I’ve looked into RI treatment with Dr. Braverman. I even went so far as to start dialing his number for the free consultation. I mean, logistically it’s somewhat doable: Braverman’s office is only 2 hours away. Boss would even work with me for all the time I’d need to miss from work. There’s a semi-local clinic where I could be seen for non-NY appointments. But, it’s all so stupidly expensive and my insurance covers none of it. Another door closes.

With no real solutions, I feel I’ve basically said nothing this entire post up ’til now… except for a whole lot of “maybe’s” and “I don’t know.” Which is pretty much how I feel about things too: maybe this, maybe that, and I just don’t know.


 

Finally, it wouldn’t be right for me to end this post without making mention of my due date… well, one of them anyway. I’ve added the due date to all the other tough moments of being in the fertility trenches. I like to think of them as a collection of battle scars. As scars become layered on top of each other, they form a thick skin. And a thick skins helps us toughen up and soldier on, even when our insides are all soft and battle-weary.

June 9, 2016 would’ve should’ve been my due date for pregnancy #2. Instead of a baby on June 9, I got my period. Seriously. Jake sent me a beautiful bouquet of flowers at work that day to let me know he didn’t forget either, which meant so much to my heart. I think about it every single day and I will always hold a special place in my heart for the little person who should be here with us now, but is in Heaven instead. I love you, S.W., and You Are Missed.

In S.W.’s memory, this charm hangs from my rearview mirror, for when I look back while still moving forward.

mcheart

  Peace.

 

 

 

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Author: Marixsa

Navigating the infertility waters and encouraging other mamas-in-waiting along the way.

7 thoughts on “The Meeting (and the due date)”

  1. Your husband sounds amazing. I am so sorry you had to pass a due date that way. I really support you going to Dr. Braverman. He is very thorough and has great success with Endo and RPL patients. Sending you so much love.

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  2. So much information to consider and difficult decisions to try to make. It is never easy. I hope you can find a way through that you feel happy with. Getting another opinion from a new RE sounds like a sensible thing to do. Good luck xx

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  3. What a lovely charm. Im so sorry about your due date. Those days are so hard. I also have MTHR, and years ago when we first started this process, my docs acted like it was a big deal. However, more recently they have told me studies show it is not a big deal. So who knows? I am on Folgard for my MTHR and so far (knock on wood) no issues with it this pregnancy. Best wishes moving forward love.

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  4. Just a giggle for you: My doc calls the “WTH” meeting a “WTF” why the fail. THAT at least cracks me up every time.

    Due dates missed are so incredibly hard. I like to think that I’m honoring my babies’ lives when I remember their due dates.

    MTHFR: I wouldn’t worry about the test. I’d just treat it. The treatment is so simple, really: one baby aspirin a day, and a better form of B6, B12 and folate. — Extra folic acid (methylfolate form), Extra B6 (P-5-P form), Extra B12 (methylcobalamin form). I like the Solgar chewable/sublingual for the methylfolate and non-chewable P-5-P. I like Jarrow for the methylcobalamin. I spent $425 from my wallet to have the test done (because I had a poor RE at the time who didn’t do the test) and I tested positive.

    Sending you hugs.

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  5. I have MTHR as well and have been told basically the same thing: it’s not a big deal. I am on aspirin and extra folic acid for it and other than that nothing special for it. I have not experienced any of the issues some believe to be related to it either (early miscarriages etc) so I tend to agree it’s not a big deal.
    I am always all about second, third even fourth opinions. The more information you can get the better I always think it is. I have a good friend who got pregnant with endo using IUI so it can absolutely work! Good luck.

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  6. I have mthfr and I know people are saying it’s not a big deal but my hematologist made it sound like it is a big deal. He had me on lovenox and the type of mutation I have I cant take the methyl folate it won’t do anything for me I don’t take any extra folic acid I do take the baby aspirin. I did ask him if the mutation could cause me not to get pregnant or to miscarry and he told me that it can cause both because of the clotting. He told me my miscarriages could be a blood clot going to the baby. And also with the clotting problem in the uterus it could cause infertility. have had 4 early miscarriages and mthfr runs in my family. My fathers side has a history of miscarriages and having trouble getting pregnant. I was on lovenox for the first 12 weeks of pregnancy. So I tend to be cautious and I’d rather be safe than sorry. Just saying

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  7. What did he say when you mentioned that he talked you out of the ES last time? Honestly, that would really bother me and I would want a clear answer that doesn’t sound like he’s making up the protocol as he goes along. Also, did he give any reasonings for why your AMH might be at that level? I don’t know a whole lot about it, but it seems like it’s on the lower side for your age.

    I know the Endo thing really makes things complicated because it can affect everything or almost nothing depending on the person, and the truth is that they don’t really know all that much about it. I was diagnosed with it at 12 and only because I eventually bounced around enough to end up at the top specialist for adolescent endometriosis in Boston. I am shocked by how little gynecologists and general practitioners know about the disease and have even been given misinformation from doctors who SHOULD know better. No wonder why so many are misdiagnosed or undiagnosed! What if you looked specifically for an RE or similar who maybe specializes in the Endo side of things rather than a general RE? I don’t know if there are people like that, but it makes sense to me to find someone who is better acquainted with the specific issues of Endo as opposed to someone who covers a lot of issues, of which Endo just happens to be one. I know this doesn’t really help if insurance doesn’t cover it… my mom wanted to keep me with the specialist who diagnosed me so that I had the best chance possible of saving my fertility, but no matter how many times we appealed the insurance, they denied it anyway.

    I know the PGS issue is difficult to deal with. We also discussed it at length and although we didn’t end up having embryos tested, it was something we were open to. I guess the way it was phrased to us was that an abnormal embryo was unlikely to survive as it was, so testing would be giving us the best chance possible at a sustainable pregnancy. Either way, you have to do what’s right for you.

    I’m so sorry that you haven’t been able to find more answers at this point. I just don’t understand why you have to be stuck in this place. In the meantime I’ll be thinking of you, especially with the due date this month, and praying for a door to open somewhere you haven’t looked yet. xx

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