Saturday, 4 January 2014

The IF-RPL Stages of Grief

Although the Kuber-Ross model describing the five stages of grief often experienced while facing a terminal illness has been applied to other situations, I've noted that I seem to be going though a unique five stage approach following my second miscarriage.

This emotion seems to have replaced denial and anger. I think I did a pretty good job of repressing any expectations of optimism, so much so that the news that the pregnancy wasn't viable wasn't even a surprise to me. I prevented myself from feeling any sadness at the time, but the sadness creeps up on me at times if I think about where the pregnancy could be at any given time. This is when I transition to frustration. I'm ready to be done with procreating. I'm ready to be finished with the frequent visits to my RE's office and the accompanying lies and excuses. I want to end the secrecy. I'm tired of feeling as if our lives are on hold.

Although this is petty, I really wanted my last pregnancy to work as it would have granted Husband fatherhood before his 40th birthday. Waiting two more months feels like two more years at our age. Even more petty, my friend in Maryland is lapping me -she's pregnant with her second while trying to conceive in the same time period as us. I'm starting to prepare myself that Myrtle will be pregnant again soon. Although this could be the least of my worries, I resent that I could have to share the spotlight if we were to be pregnant at the same time. I'd have to endure hearing about her uncomplicated, perfect pregnancy while I'll be a high risk mess. I never thought I'd feel this way, but infertility and pregnancy loss makes you bitter and spiteful.

Perhaps anger could also be replaced by regret, which is sort of a subcategory under frustration. I regret that we didn't start trying to conceive sooner, I regret that we didn't start IVF sooner. I regret wasting time regretting about the past when I should be focusing on the present and the future. I'm so fortunate that we have our embryo insurance, but at the same time, it's frustrating to think about going through another two week wait and ensuing uncertainty. I'm also preparing myself that we shouldn't expect our FET to work, just because our first transfer resulted in a pregnancy, which could mean waiting even longer for our next transfer. I feel like I don't even want to know the numbers of any positive beta results. Beta numbers mean nothing to me. I once joked that I won't accept that we're having a baby until my hands are behind my knees and I'm hearing someone instruct me to push. Now that's sounding much more realistic.

As we drove separately to the visit that discovered our embryo's arrested development, Husband arrived home before me and had a glass of wine ready for my entrance. While I didn't feel the need to drink, I just appreciated that I could. Fortunately, the eating part of this phase was short lived, but it included a shameful trip through the Burger King drive through. I turned into a dead-end street and parked in the cul-de-sac and devoured the oh-so satisfying while yet so horrifying fast food. I then tossed the rubbish and took my car in for interior cleaning to cover up the crime. Until I had my D+C, I felt that it didn't matter if I ate healthily. Once my uterus was reset, I restarted my good eating habits.

I have yet another two week wait until the results from our products are received. I figure a chromosomal abnormality is just too straight forward to be our answer, so I'm preparing to learn that our embryo was euploid. Fortunately, I've not have any recent patients with RPL, so I was overdue for a refresher.  Seemingly, ever article seems to start with a discussion on how difficult it is to study and analyze RPL. Even women with RPL may have different explanations for each loss and two individual women with RPL may have separate etiologies. Making matters more complicated, the expert groups (American College of Obstetrics and Gynecology and American Society of Reproductive Medicine) lack consensus on what defines recurrent loss and what type of evaluation should be performed.

Statistically speaking, 15% of pregnant women will have a spontaneous loss, but just 2% of pregnant women with have two consecutive losses. This is actually slightly lower than the observed frequency alone (0.15)(0.15) = 0.0225 or 2.25% which does allow for mere bad luck to be a plausible explanation. However that mathematical model doesn't account for the inherently higher risk due to my age. Accordingly, my miscarriage risk with a future pregnancy is now 24-29% as I have two losses recorded.

Interestingly, I uncovered some information I hadn't read previously. A uterine septum is the congenital anomaly associated with the poorest reproductive outcome and it is the most common uterine abnormality to cause RPL. Although some women with a septate uterus can carry a full term healthy pregnancy, (with a higher occurrence of malpresentation) it is proposed that decreased blood supply to the septum may lead to poor implantation and the miscarriage rate may be as high as 60 percent. My RE felt that he couldn't conclusively attribute my first miscarriage to my septum, especially as mine was relatively small, but I intuitively felt that it was to blame. Now, I have some data to validate my instincts.

Some other information to consider is that there is an increased risk of miscarriage in the setting of abnormal sperm morphology (defined as fewer than 4% normal forms -Husband only had 1% normal on his complete semen analysis). Although I felt confident that my level of exercise and activity wouldn't cause a miscarriage, I kept quiet about what I was doing as I feared I would be judged negatively, given my history. Now I have it in writing that exercise does not increase the rate of a sporadic or repeated loss. Regarding celiac disease, more evidence is indicating that even subclinical disease may contribute to recurrent pregnancy loss and treatment in the form of a gluten free diet seems curative. However, as it is the end effects of gluten enteropathy that may create a poor reproductive environment and not the gluten itself,  a gluten free diet would not offer benefit in the absence of celiac disease.

The other controversy in the field or RPL research is the role of thrombophilia evaluation and treatment in the setting of first trimester losses. Recent recommendations suggest limited testing to Anticardiolipin antibodies and lupus anticoagulant (uterine cavity and thyroid testing are also suggested as part of an initial RPL work up. Karotyping of both partners should also be considered, although the yield is small, the findings of an imbalanced translocation could represent a game changing plan requiring PGD) My RE and I had discussed that there seems to be a low pre-test probability of performing hyper coagulable testing with early losses, but I'm reconsidering as I experienced an episode of aura a few days after I learned the pregnancy was non-viable. I had been instructed to continue all my meds so that I wouldn't pass my products spontaneously, and I honestly can't remember if I took my estradiol that morning. However, all forms of exogenous estrogens are contraindicated in women who experience aura (with or without migraine) as that combination produces a higher risk of stoke. Thus I wonder if the supplemental estradiol contributed to an increased hyper coagulable state, which may have played a role. I know such a theory cannot be determined with testing for inherited thrombophilias, but I'm still curious to see my panel.

As I anticipated, my RE wants me to wait to have one normal cycle before proceeding with a FET, so if AF cooperates, we're looking at February. He's proposing that we do a natural cycle transfer as it seems that I have more than just blood pressure problems with exogenous estrogen. (on a side note, I'm so bummed that I won't be able to take HRT when I go though menopause!) Although the concept of a 'natural cycle frozen embryo transfer' sounds like an oxymoron, I like the idea of using fewer drugs. However, I'm reluctant to rely on my unpredictable ovaries and my borderline uterine lining. I'll be gutted if we miss the timing and have to wait another month, but more so I fear wasting our good blastocyst if everything isn't perfect. Other options to consider include using transdermal or intravaginal estrogen to avoid the liver's first pass effects, and/or anticoagulating. Fuck me, why does this seem so complicated?

The other part of my plan is that I am going to trial going gluten free in the month of January to see how I feel with it. In the past few years, I've had some patients describe how (even in the absence of celiac disease) they went gluten free and it seemingly changed their lives and they feel so much healthier and happier. My inner skeptic questioned if it was merely a placebo effect, but over time I came to accept that if you think you feel better, who cares about the validity of the variable, if you're feeling better -good for you! A few bloggers have also reached out to me with their gluten free success stories. As I used to eat cereal two, sometimes three, meals a day, I am pretty sure that I do not have any form of gluten intolerance, so I know that the data does not indicate that there would be any benefit. However, it's a relatively easy intervention and I figure what do I have to lose? (maybe a few pounds!) We cleared out our pantry and made a donation to the food bank whilst discovering the gluten free section in the store. Additionally, as we found a gluten free beer, Husband is willing to do this with me.

This is essentially the same as the Acceptance phase, but I thought 'embracing' implied a more positive connotation. It's the process of appreciating the things you can do in your non-pregnant state. After running a half marathon in the middle of August, my training went on hiatus while we spent our weekends preparing for the in-laws arrival. I resumed my routine in October, but shortly had to taper my activity level as I reached the end of my stimming phase. I was back in the pool on the 6th day after my transfer, but I was still feeling a little delicate from the effects of my retrieval, so I moved myself to a slower lane. However, once the temperatures dipped below freezing, I decided against swimming in an outdoor pool. I skipped a month of Cross-fit during this time, and my Thursday evening tennis group stopped meeting just before Thanksgiving. Once I learned that we were non-viable, I ceased all activity.  Although exercise cannot disrupt a healthy pregnancy, I feared that it could potentially cause me to spontaneously passing my products, and I didn't want to take that risk.  Funny how your perspective can change. I went running a few days after my D+C, and discovered just how much my fitness had declined.

Once again, I've become a cautionary tale to be careful about what you wish. When it was originally proposed that we would do a freeze all cycle, I liked the idea of being able to recover from the stimming and retrieval and get myself back into shape for my transfer and possible pregnancy. Wish granted. I signed up for three 10Ks in January and a half marathon in February. I ran 5 miles on Christmas morning, just to prove to myself how committed I was. Husband and I re-enlisted in Cross-Fit. As the yoga classes have been temporarily suspended from the Cross-Fit schedule, I picked up a few DVDs to do at home. I joined another session of Thursday night tennis. After taking almost six weeks off, I'm looking forward to getting back in the pool.

Perhaps my objective is to keep myself so busy that the time passes quickly, but I welcome a break from all the medications, blood draws and ultrasounds. It's been a struggle to keep up with my workload as I've been running out of the office so much, so I'll try to get ahead in anticipation for my FET preparation.  Mostly, I appreciate this time as I feel protected from disappointment. While I'm anxious to move forward with our next steps, I'm also fearful.


  1. I find it so incredibly frustrating that there's basically no consensus on what "causes" RPL. I feel like every doctor I've talked to is quick to jump on the chromosomal abnormalities bandwagon until I exasperatedly shove my D&C results in their faces and prove that for me, that's simply not the case. No blood clotting disorders. So what, then? Why can't I have an answer so I can just DO SOMETHING about it?

    Granted, I'm OK for now. But I'll never truly relax, nor will I be confident if we choose to try again. I have no idea why it's working this time when it didn't before. I have my theories, but I don't have proof. So while our reason for infertility was irrefutable (I mean, azoospermia is hard to argue with), our reason for RPL is still one big, giant question mark. I freaking hate that.

    I don't blame you for these reactions, not in the least. They seem 100% justifiable. I really hope that in the near future, they can figure out better explanations for RPL so that more women don't have to suffer through this painful world of the unknown.

    And totally off topic - I see you like cereal but want to try gluten free. Might I suggest Rice Chex? I eat them every morning with almond milk and it's simply amazing.

  2. I don't even have the words... But just want you to know I'm thinking of you. XOXO

  3. My neighbor has gone (mostly) gluten free despite not having celiac disease and says he feels better - I'm not real sure what "better" means, though. I am skeptical, but who am I to judge what makes someone else happy. He still eats the deserts I make, though - gluten and all. haha. My BIL told us about an article he read that the wheat we are eating now is different than it used to be. Something about the way it's grown, maybe to be a heartier crop, doesn't digest well anymore. (That's really vague. Sorry. I can't remember more details.) So maybe that's why people seem to feel better going gluten free. It's not that gluten itself is the problem, but our GMO wheat is.
    Anyway, it can't hurt to try. Lord knows, I tried everything. I was on a high alkaline/low acidic diet per my acupuncturist - to create a less hostile environment for an embryo to implant. Maybe that was the difference. Who knows?

  4. So many of the feelings you share I relate to so much! I hope the changes you make are the perfect thing for you and getting your baby here. Wishing you all the best with your FET.

  5. I completely identify with the resentment. I too, want to be the only person in my universe pregnant when it happens again. I have a sneaking suspicion that my younger sister, who is unmarried, unemployed, and has never technically graduated from high school is trying to get pregnant again (she has 2 girls already). I will be none too pleased for obvious reasons, even if I am already pregnant.

    RPL testing. Is it going down a rabbit hole that leads to more confusion than answers? Possibly. There is such conflicting research on coagulopathy and immunology contributing to miscarriage. Even if the correlations are truly there, the data justifying treatment such as heparin/lovenox are hardly robust. Even with my MTHFR situation, no one can verify that homocysteinemia actually contributes to miscarriage or if it is just a marker for another unidentified associated mechanism. With all that (and more) in mind, I opted to just do the blood tests. If I were to miscarry again, I would certainly regret having not done everything possible beforehand.

    It's a very difficult process to reconcile the loss of a euploid conception. At times, I wished for aneuploidy just so I could have a feigned sense of relief that an early loss was ultimately the best ending for all parties. I think the karyotyping of the products will end up dictating which direction your scavenger hunt for answers will lead.

    Jane, I know you tried very hard to protect yourself from disappointment, but I hope you are allowing yourself room to grieve. Perhaps, it's that British austerity that keeps you from turning into a wallowing heap. Please know that I am still thinking of you and wishing you well.

  6. As usual, you process your emotions and experiences and fears so well. I wish there was an easy answer to all of this. But right now it just seems like "keep trying". I am sure you will be back in shape in no time with all those races! I will be interested to hear how you feel gluten free!

  7. Wow, I don't want to hear what you'd think of my diet if one trip through the BK drive-thru is that shameful for you. ;) Joking aside, you have a whole lot of complex emotions to work through and you definitely can't expect it all to make sense at once. Even though we try not to hope, it's hard to push down sometimes and it sneaks in when you don't want it to. Hugs, friend.

  8. I'm so sorry you have to wait and that hubby's 40th is creeping up. Those benchmarks hurt when we are still waiting for a miracle. Ugh. Hoping and praying that your FET in Feb brings your take-home baby in 2014!

  9. I was also very skeptical about the gluten-free diet but it was essentially free to try and like you...I had nothing to lose. It's definitely worth the try! I can't say I felt any different but here I am....
    You mention the "borderline" lining. Please Please Please research Viagra suppositories. I realize that each woman's IF experience is unique and different but I'm convinced it was the fluffy Viagra lining that made alll of the difference for use. I'm the one who initally found this option and proposed it to my RE (who thankfully agreed).
    I had the RPL testing after transferring 3 embryos with no results. Found just a minor mutation....but I just wanted one more possible thing to be "marked off the list".

  10. Although I have not personally been through IVF, I have experienced RPL, with no answers except it 'just happens'. I am in awe at your strength and ability to process your losses and your willingness to take initiative yourself and do what's going to be best for you! Trial and error, at least food wise, and I am praying praying praying for your next FET. I'm also hoping you get some answers. How frustrating. Lots of love and support your way! Xox

  11. We did Paleo diet, which is gluten free plus some more. It actually helped us be very energetic. We both lost weight and felt good. I have the same thought about being pregnant before turning 40.... I'm glad you're keeping yourself active. I am hoping for the best for you for your FET.

  12. It sounds like you are doing good work processing all these thoughts and emotions. I always admire how you take a scientific approach to analyzing the infertility and loss experience. As another commenter said, I hope you are allowing yourself time and space to just grieve though.

    As someone living in recovery after an eating disorder in my teens and early 20s, I've found over the years that allowing myself non-food related indulgences is important. For instance, if I want to spend a whole Saturday watching movies and not doing anything productive, that's allowed. I eventually found that for me, feeling guilt over things like lack of productivity was tied to eating and/or restricting habits. So working on those issues of guilt/shame at the source has helped free me from attaching reward and punishment to food.

    I am really hoping 2014 has great things in store for you. It's definitely your turn for some good luck and happy news.

  13. You collected an amazing panel of studies there. I do hope they help you move forward. My FET is planned for February, too, and I'd be more than happy to share the spotlight with you, should we both be so lucky. The estrogen part is through patches, which seems to be my clinic's standard approach for FETs. I hope you and your RE find a good way to make a plushy lining for your embryos!

  14. I completely get you on the regrets of not doing IVF sooner. It was really hard on my hubby when he turned 40 last year and he's commented several times how old we will be when our kids graduate high school. I also know that I didn't want to regret it if we didn't try everything we could to have a family, even if it never worked. Fortunately, our Hail Mary last to at it worked for us. Now I really hope it works for you as well! I also relate to the eating splurge and then covering up the evidence! I've been known to do that myself on occasion.