Grief. It's such an ugly, though necessary, process. One can spend hours reading article after article on how best to deal with it. Yet everyone is different. Some will spend longer periods of time than others at the different steps. There's no correct way to journey through this process. But one thing I've found is that sometimes grief can trigger change; opening doors that previously were unknown.
The past couple of days, I've been searching for these doors. Searching for an explanation for why this happened. My REs were clearly as surprised by the outcome of the IVF cycle as Grey and I were and are advising us that we should try again with the embryos we have. The thing is, I'm not much of a gambler; I like hypothetical explanations for what might have gone wrong with options for how to test those possibilities.
My anxiety over trying again comes from the fact that we are "unexplained." Based on all the tests Grey and I have undergone, there is no reason why we haven't been able to achieve pregnancy. This IVF cycle didn't give us much insight either, as everything went exceptionally well. I responded well to the drugs; I ended up with 13 mature eggs. Grey's sperm was able to fertilize my eggs and we ended up with 8 beautiful embryos. I still remember the excitement in Dr. Optimism's voice when she called to tell me that we were able to freeze the remaining 6. It was all considered textbook.
So why? Why is this happening? What is it that went so terribly wrong? Because, after two long years on this road, I have a hard time believing it's just a bad roll of the dice. I'm worried we're missing something. Something important.
If you Google "Unexplained Infertility," a number of websites and articles appear. Many will scare the hell out of anyone, using terms even I haven't heard of. What I managed to put together with the help of the National Library of Medicine is that unexplained infertility falls usually into 3 categories: problems with getting sperm and egg to meet (usually due to mild endometriosis or scarred fallopian tubes), inability to fertilizer (poor egg quality, poor sperm quality, genetics) and finally implantation failure (genetics, maybe immunology). The beauty of IVF is that it over comes the first category, and one can get an immediate answer for the second. But the third one is tricky. One failed IVF attempt isn't enough to raise red flags. Usually it takes 2 or 3.
In a way, unexplained infertility is a curse. Don't get me wrong, I'm not belittling anyone who lives with male factor infertility, endometriosis, PCOS, blocked tubes, etc, as these diagnoses are life-changingly awful too. But with these diagnoses usually comes a treatment plan and an idea on how to proceed. With unexplained, from the moment you walk through the door, the doctors are clueless on how to help. Some are even arrogant enough to assume that this is all in your head and will be readily resolved. But as time goes on, the conundrum grows and you begin to question whether what's limiting you is something no human will be able to resolve.
Bu there are many hypotheses: I've read about mutations in the folate pathway, specifically focusing on a mutation for an enzyme on the biosynthetic end, and how they COULD be a cause. The big problems with these papers is that they only show correlations with a small population and their statistics havent' been overly convincing. Though I do believe these mutations exist, I have a hard time believing that a single mutation is the case of all of this. Especially this one mutation as it's easy enough to treat by supplementing with folic acid, which we're very good at doing in this country. Another hypothesis which does make a bit more sense to me is this idea that one's immune system may play a role. I need to send some more time here, but considering I don't have a family history of autoimmune disease, I don't know if this will help.
Finally, I've begun digging back into the research about the mind-body connection. There's been a lot of work that's come out showing a direct link between mental state and basic body function (hormone regulation, mood, even IVF success).
I'm scared about proceeding with this FET because I don't want to go through another miscarriage; another failure. I had the D&C yesterday: it was painful, but it was over quickly. The hardest thing was waking up today and immediately feeling that my body was empty. It's like any residual hope was sucked out of me. I know it was the right decision, but it's not something I want to ever go again. Hence I search, hoping that I'll find something that will help guide my doctors so that I can prepare my body for the next round. So that I can reduce the risk of living through this heartache again.
The only thing that has kept me going has been the love and support I've received from so many of you. I've read every single one of your comments, and they all reminded me that I'm not on this path alone. A very special thanks to MissC for her amazing gift. You have brought so much peace to my heart. Because of all of you, I know that I will be okay and will be able to move forward. For now, I just need to build my strength.
After we were diagnosed with unexplained infertility I researched and researched trying to find a possible reason. I have been working on the fact that we may never figure it out. Also working on trying to try my doctor more. I am so sorry that you miscarried. I hope you can move forward with FET. I know it is scary and the fear of having another miscarriage is heartbreaking, but you also have a great of having a beautiful baby. I am thinking about you.
ReplyDeleteYou were definitely in my prayers yesterday. I'm glad things went "well". Hope you recuperate quickly physically, but know the emotional and mental part will take so much longer. The empty feeling is no fun. And neither is the fear about going through this again.
ReplyDeleteYou're welcome dear. That feeling of emptiness is pretty painful, but I still have hope for you. I have a diagnosis of PCOS, but even so with the proper medications, I should be able to get pregnant on my own. I couldn't.
ReplyDeleteI wish I could help or give you an idea of what could be the problem, but it's one of those difficult situations without an apparant answer. I still have many questions about our loss that I am trying to get answered.
Keep doing what you can do and we'll be here to support.
Alissa
i am so sorry for ur loss, but i totally understand how u feel about not knwing the cause, i do not have unexplained infertility but for years i was afraid to go get checked out and find out exactly what was the cause, so it was like i had unexplained infertility.
ReplyDeletei have read something somewhere about the immune thing, i think it has something to do with the blood groups
Hang in there and knw tht we are all here supporting u with our prayers
I can understand you being hesitant to go through with the FET. The unknown part of unknown infertility is quite scary. But you have to remember that if you don't go through with it you'll also never know what could be waiting on the other side. Yes, I realize it could get worse.
ReplyDeleteUnexplained infertility is the WORST. You are correct about the immunology aspect being "tricky". I wish it was either fully accepted or not, instead of this odd in-between area.
ReplyDeleteI called Dr. Sher back in March of last year for a free phone consultation. He ordered several immune blood tests for me. My insurance covered some of the cost, which was nice. But my results came back that I had elevated natural killer cells and antiphospholipid antibodies. And this can cause implantation dysfunction, apparently. According to the doctors who believe in the immunology stuff.
With all that being said, my current clinic doesn't really buy into it. They "let" me take a blood thinner, which is one of the treatments for elevated antiphospholipid antibodies. But they refused my request for an intralipid infusion, which is what Dr. Sher would have had me done. I can't stop wondering if perhaps the lack of intralipids led to my miscarriage.
Thinking of you.
I am so, so sorry for your loss. And just as much, I am so sorry for the diagnosis of "unexplained infertility". I may have PCOS, but it sure as hell didn't explain why my embies failed to implant this last IVF, and it sucks balls. I wish there was something to pin it on so we can fix it, but instead we just have to cross our fingers.
ReplyDeleteGood luck to you.
(sorry to reply to another comment, it's the only way it'd let me comment. Odd.)
Big hugs to you while you process the grief over your loss. It is so hard.
ReplyDeleteThinking of you.
I am so sorry for your loss. I have PCOS and you are right, undiagnosed is a far worse and worrisome fate. I am glad the d&c is behind you and am sending you lots of love while you recover.
ReplyDeleteI think unexplained infertility has got to be so frustrating. I have PCOS and MTHFR and a few other disorders, and at least I have some kind of idea as to why my body is so rebellious. But you can't fight what you can't see...and that is so irritating. Big hugs.
ReplyDelete