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The Not So Fertile Goddess

~ and here we go again…

The Not So Fertile Goddess

Category Archives: Uncategorized

Next Up: FET (again)

10 Tuesday Apr 2018

Posted by thenotsofertilegoddess in FET #2 (after IVF #6), Uncategorized

≈ 2 Comments

Tags

Coping, FET, Infertility, IVF

My follow-up consultation with my RE yesterday was packed full of good information and even a surprise. So first the surprise: we have one frozen blast left over from my last cycle! Sure I’m ignoring the fact that it’s been a month since my egg retrieval and fresh transfer and no one mentioned to me until yesterday that I have a frostie. Seriously, why did the nurse not call me with that update?! Anyway, I’m going to ignore that slip up and focus on the fact that I have a surprise bonus embryo that I wasn’t counting on. Of course it’s not tested and it’s an early blast graded “BC,” which isn’t the prettiest embryo but still has a 90% chance of surviving the thaw. I asked if BC embryos still make babies and my RE said, “yes”. In fact, just for fun, he looked back to my cycle 4 years ago – the one that resulted in the birth of my daughter – and we discovered that she was also an early blast graded BC. Maybe my crappy looking embryos fair better than my high quality ones. Okay, I’m grasping at straws here. I was 36 back then and I’m 40 now, so the chance that this little BC is healthy is lower. But still – it’s a chance.

My RE recommended using what we have and doing a frozen embryo transfer (FET). Using what we have includes a little frozen PGS “abnormal” girl too. Yes, you heard that right. My RE is recommending that I transfer a PGS abnormal embryo. But first a few points to clarify. We did not do Next Generation Sequencing (NGS) so the results are either normal or abnormal – all mosaics are labeled as abnormal. Knowing what I know now, I would have tested using NGS so that the results would have specified whether the embryo was mosaic and the percentage of mosaicism. But I digress. In any event, I have a lot of respect for my RE (and his knowledge base) because he isn’t quick to dismiss all abnormal embryos. He took a close look at the details of the results and saw that this particular “abnormal” embryo only has a tiny segment of duplication on the short arm of chromosome 17. He said that a small percentage of the population may be walking around with similar minor abnormalities  and no one knows it because we never tested for that sort of thing before. This particular partial duplication will not lead to the birth of a child with an abnormality. Maybe my embryo will even have a superpower. Okay, that’s probably not true but I’d like to think so. The embryo may not implant or might be an early miscarriage (no different than what happens with so many pregnancies both IVF and unassisted) or the embryo could develop into a healthy baby. Both of these embryos are long shots simply due to my age-related quality issues, but it’s a chance. So the plan is to transfer both for my upcoming FET.

Going into this consultation I was prepared for the FET recommendation. I was also prepared to call it quits afterward if the FET fails. Over these last several weeks I’ve come to a place where I’m at peace with not having another child. I never thought I’d say that. And I’ll write specifically about how I shifted to that mindset in a later post. For now though, my RE convinced me to try one more egg retrieval and fresh transfer if this FET ends in another negative beta. My husband and daughter are both strongly rooting for another child, and my husband was also hoping to do one more fresh transfer.

My RE told me about some studies that followed women over the course of up to 12 (gasp) complete IVF egg retrieval and transfer cycles. The studies found that the chance for success increased over the course of 3 cycles, but plateaued after that. Meaning that after 3 complete cycles, the results don’t often change much. It should be noted that multiple FETs with eggs collected during the same retrieval only count once – that is, you can do several FETs and that doesn’t count against the 3 cycle benchmark. Of course there are exceptions to this rule, but when weighing the pros and cons of when I want to stop, I’m not going to keep doing this forever in the hopes of breaking the odds. Taking all of my cycles together and the particulars of my results, my RE said that if it were he and his wife, he would do one more IVF and fresh transfer after the FET. He said if we do that and still it fails, then I can feel confident that I didn’t leave anything on the table. No looking back and wondering. No regrets.

I like the sound of that. It makes sense. I think with the “break” of doing a FET first – since there’s so much less prep work for a FET – I can muster up the strength for one more IVF cycle. I don’t want to look back one day and wonder, “what if”. This plan seems like it will satisfactorily exhaust our options with my eggs. And if the journey ends there, I’m okay with that.

On a side note, I want to mention that I mustered up the courage to ask the scary question I had been avoiding. The “does repeated rounds of IVF cause cancer” question. My RE gave me a confident “no” and explained that the hormones used for this are naturally occurring in the body so the body knows how to process them. It doesn’t cause cancer. When I asked specifically about estrogen-sensitive cancers, he explained that again the answer is that IVF will not cause them. Prolonged estrogen can cause estrogen-sensitive cancers to grow (get bigger) but will not cause them. But he specified that it really does have to be prolonged exposure – the short bursts we use for IVF isn’t considered prolonged even when we do it multiple times. So I’m putting that fear to bed and thankfully moving on.

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The Moments That Give Us Pause

03 Tuesday Apr 2018

Posted by thenotsofertilegoddess in Uncategorized

≈ 1 Comment

Tags

Healing, IVF, secondary infertility

StockSnap_COT4YSOLEHThere I was, sitting at my desk having a perfectly good day. It had been a while since I was on Facebook and so I decided to see what my friends had been up to. And as a scrolled there it was – my dream. A woman holding hands with her husband and toddler, a beautiful pregnant belly growing obviously under her dress. Everyone in the picture was smiling with what could only be described as bliss.

I’ve seen this picture a million times in my mind’s eye. Only in my picture, I’m the woman. This was supposed to be my future. But today this picture was of a friend who is not much younger than I am. I was happy for her, yet also sad for the loss of my dream. I know I am not quite done with infertility treatments yet, but the end is very near and our last efforts are a long shot at best. So I am preparing for, and on most days accepting, this loss.

It did make me wonder, though, how some older women get pregnant so easily and others are fighting an uphill egg quality problem due to age. I began to get irritated. Maybe even angry. On the one had you see all these stories of women getting pregnant well into their 40’s, many even seem to be natural conceptions. Everyone knows a mom, friend, or friend of a friend who had a healthy baby after they passed age 40. On the other hand, any fertility expert will warn you that egg quality dips after 35 and plummets after 40. That doesn’t mean that there is nothing that can be done to help improve egg quality. But I feel like I’ve done all the recommended strategies – supplements, healthy clean eating, removing toxins and endocrine disruptors from home care and beauty products, weekly acupuncture, etc. – and still my egg quality has been dismal. I’m not sure why these strategies seem to work for some women and not others. I’m not sure what the norm is.

To many women, stories of others conceiving in their 40’s gives them hope. And in the beginning of this journey they gave me hope too. In fact I delayed seeking infertility treatment for about 5 months because I had so much hope. But at this point those stories don’t give me hope. Call me a pessimist, but I prefer the term realist. I think it really comes down to perspective. While we see these great stories of pregnancy success in older women, what we don’t see posted are all the stories of the women who didn’t become pregnant. Now I know we do see many negative outcomes in IVF support groups for women over 40, but still, what about all of the women who are silent? Can you imagine what it would look like if we knew how many women tried and were unable to conceive in their 40’s? How much would those stories outweigh the successes? Would that give us a more realistic picture of our chances?

When I thought that age was just a number and it didn’t really impact fertility, I felt hurt, confused, and depressed when my IVF’s failed. I simply couldn’t understand what was going wrong. When I take a more balanced perspective and realize the positive stories of conception in older women are exceptions not the rule, then I don’t get so down and hard on myself when things fail. I know that now, I’m the norm – unfortunately. It’s still sad and part of me wishes I would have been able to try when I was younger. But I also know that life circumstances simply didn’t work out that way for me, and I wouldn’t necessarily change them.

I may never get my dream picture, but I will adjust and heal. I will enjoy life and all my blessings. But I think there may always be days when I see my dream manifest in other people, and I will take pause and hold loving space for that loss.

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Thoughts on Approaching the End of the Road

27 Tuesday Mar 2018

Posted by thenotsofertilegoddess in IVF #6 with Fresh 3-day Transfer, Uncategorized

≈ 4 Comments

Tags

Healing, Infertility, IVF, secondary infertility

nathan-anderson-454637-unsplash

How do you decide when to stop infertility treatments?

I got an email from my IVF nurse coordinator saying that it is good that I’ll be talking about my options with my RE on the 9th, but she also indicated that my RE is leaning toward recommending we do a frozen embryo transfer (FET) with my PGS “abnormal” embryo that we still have on ice. Since we didn’t do Next Generation Sequencing, we have no way to know whether this embryo is mosaic or not. It has one small issue that would either result in a failure to implant, early miscarriage, or self-correct and turn into a healthy baby. There’s just no way to know. It won’t result in a live birth of a baby with a chromosome-related disorder. In my mind, I’ve been saving this option in my back pocket for our last ditch effort before discontinuing treatment. It is a long shot after all, but still a possibility. So I don’t want to leave this one embryo behind, but I’m not expecting it to work. Honestly, I really thought my RE would recommend one last egg retrieval and fresh transfer before going with this long shot FET.

I know it’s my choice. My body, my money, my choice. So I think I could talk my RE into one more IVF try. That’s what my husband wants to do, but he is open to hearing what the RE’s rationale is. But if my RE ends up recommending transferring the PGS “abnormal” embryo rather than another IVF fresh transfer, then he is basically saying that  I’m at the end of my road with my own eggs. He’s saying that the chances for success with my eggs is so low that it’s not worth going through another cycle.

But it’s still my choice. So how does one make that choice?

It’s a heart heavy equation. You weigh your dream against your finances, the physical impact of the medications and procedures, the emotional toll this takes on you, the effect on your relationships, and you try to figure out just how much more you can take. Or how much you want to take. I think I can take much more, but honestly, I don’t know that I want to. Many women won’t have to make this decision because IVF will work before they reach their limit. But some of us do have to make the decision.

People tell you, “don’t give up.” Never give up. But I think that is naive advice at best, and potentially harmful advice as it can make you feel like a failure or guilty if you stop. Not everyone can afford endless rounds of IVF. I’m lucky to have insurance coverage or I would have had to stop due to finances long ago. But that still doesn’t mean I should never give up. I’m fighting an uphill battle against age. I could do this 10 more times and have less chance of success each time as I get older and my egg quality decreases. But honestly, the factor that is weighing heavily on my heart is quality of life. I’m tired of my life revolving around IVF cycles. I’ve missed conferences and trips. I’ve missed time with my family. Often, I feel like I’m missing life. Every decision I make revolves around my fertility – what I drink and eat, when and how I can exercise, when I can go out of town, what I read, the appointments I fit into my schedule, how emotionally connected and present I feel with those around me. Some days, many days, during IVF I don’t even feel like myself anymore. The hormonal fluctuations are real and they change how I feel and perceive things. It changes how happy I am in life.

At the end of all of this, whether it works or not, I will still have my life to live. And my life is filled with so many blessings. Not the least of which is my daughter from my first IVF years ago. And I want to enjoy all of the blessings in my life, and sometimes that’s hard to do when I’m so deep in IVF hell.

So I have to weigh out all the factors in my equation and decide when it’s time to stop. After this last cycle failed I found myself feeling really good about the idea of doing one more egg retrieval and fresh transfer, then the last FET with the PGS “abnormal” embryo. If I did those 2 cycles, I felt that I would be satisfied knowing that I didn’t “leave anything on the table”. I would have given it my best shot without sacrificing myself.  Doing more cycles beyond that tipped the scales too much and didn’t feel worth it. But am I ready to go straight to the FET with the PGS “abnormal” embryo? Can I forgo one more retrieval and fresh transfer and still feel okay about my decision if I end up not pregnant? I’m not sure. That ending almost feels too abrupt. But I won’t lie – there is a part of me that feels relieved at the thought of not having to go through another whole IVF cycle. I want to be realistic about my chances.

I’ve done 6 IVF cycles in total. I know some women do many more than that. If I didn’t already have my daughter then I know I would be willing to do more. But part of me feels like I’m missing out on fully enjoying my daughter’s life because I’m so caught up in infertility treatments and the hormonal emotional roller coaster that goes along with this. But I want to give her a sibling so much, and we want to expand our family. However, the truth is she may very well be my only child – how much do I want to miss out on? I could say that I’m not really missing out on anything with her, and maybe that’s true for some women. But it’s not true for me. The medications and the emotional ups and downs do impact me, and negatively affect my relationships and my ability to really enjoy life. IVF is hard. It gets depressing. It becomes all consuming. If can even feel addictive.  And I’m tired of paying that price.

It is okay to stop. That doesn’t mean that you are giving up or are a quitter. It means you are carefully weighing all the factors, which are unique to you, and making a smart, healthy decision. That stop point is going to look very different for different women. And that’s okay.

I suppose I’ll wait to hear what my RE ultimately ends up recommending and what his rationale is before I make my decision. I feel like I’ll have to make a quick decision after our meeting since I’m already on birth control pills to get ready for my next cycle – whether that be another IVF or the FET – and I don’t want to drag out being on those pills. Will I feel like I’m done if I do only the FET? Will I regret not doing one more IVF? Do I want to do another IVF even if the chances for success are so low? Those are the questions I have to weigh.

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Mindful Strategies for Coping During the Two Week Wait

15 Thursday Mar 2018

Posted by thenotsofertilegoddess in IVF #6 with Fresh 3-day Transfer, Uncategorized

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Tags

Coping, IVF, Mindfulness, Two Week Wait

How does one make it through the two week wait (TWW) without loosing one’s mind?

It’s a good question. It’s a rough time, often filled with anxiety, hope, fear, joy, anticipation, daydreaming, crying, excitement, etc. It’s all the intensity and contradictions of this roller coaster ride packed into two short weeks. Or less. It’s hard to maintain calm for the duration of what may seem like to others as a little blip on the calendar, but to us seems like dog years. Take me, for example. I’m trying to maintain hope and optimism. Yep I’m trying my best, but sometimes that little bit of fear or anxiety creeps in. Or sometimes it’s just neutrality.

Daily someone who loves me is asking me how I’m feeling. I know this is code for: “do you feel pregnant?” I smile and say, “I’m fine.” But I feel like the pressure is on. Not that they mean to make me feel pressured. Maybe I put that on myself. Everyone wants this to work. Of course we do.

Having gone through more TTW’s than I can remember, I’ve come to the conclusion that the most dangerous thing you can do during the TTW is symptom spotting, which that “how are you feeling?” question feeds into. Symptom spotting is basically the enemy of every women in their TWW. We tend to obsess over every little twinge or difference in our bodies. “My breasts feel more tender,” I think to myself.  Although that could be due to how much I’m squeezing them to check for breast tenderness.

But the reality is that all those “early pregnancy symptoms” can also be explained by the high levels of hormones pumping through our bodies. And to complicate matters even worse, many early pregnancy symptoms look an awful lot like what happens as Aunt Flow approaches. During my TWW during IVF #1, I was absolutely certain it had failed. I started getting a hint of a nagging heading slowing building up steam – exactly what always happens just days before my period starts. I thought I was out. I was so sure it was a negative that I typed out a list of questions to ask my RE at our follow-up “WTF appointment” (you know, the appointment you have after a failed cycle to discuss what went wrong). Literally 30 minutes after clicking save, my nurse called with my positive Beta results. Compare this to IVF/FET #2 where I was certain it worked – I felt tired, queasy, I felt what I thought was implantation cramping, sore breasts – and the Beta was negative. That was when I learned the hard way just how much progesterone can play with your mind, body, and heart.

In an effort to get through this TWW without symptoms spotting and maintain as much hope and receptivity as I can, I’m trying a different strategy. I’ve been using 2 tools daily to help keep my spirits up.

First, I’m doing a combination of deep breathing, affirmations, and meditation with the aid of a counting ritual tool. This tool can be a Witches Ladder, Prayer Beads, or simply a bowl of stones or other small items. The Witches Ladder I use is a beautiful string of crystal beads in 3 sets of 9 beads. Each set is a different type of stone, which represents certain characteristics. I created an affirmation for each set of stones. I start at the beginning and hold each bead between my fingers, take a deep breath and state my affirmation, then repeat for each bead in that section. As I proceed mindfully, slowly through each individual bead, my mind is calmed and my focus strengthened. I find this really calming when I start to feel that bit of doubt or anxiety creep into my mind. Also, doing it before I even begin to feel worried helps me prevent it and maintain a more positive sense of being.

Photo and Witches Ladder by Etsy shop Esmeralda Holly

Above is a photo of what I used, and here is a description of the stones and my affirmations. Starting at the antler (both the antler and acorns are also fertility symbols):

  • Aventurine  = luck, creativity, heart chakra, confidence
    • “The odds are in my favor”
  • Tree agate = stability and nurturing protection, weathering the storm, putting down spiritual roots
    • “I am rooted in the earth, nurtured, I can do this” 
  • Moss agate = creating abundance, fertility, new beginnings, the spirit of nature
    • “Abundance flows through me and fills me, I am fertile” 

The second strategy I’m using is drawing a daily “mantra,” or focus, using a Mini Moon Oracle set; but you could use any oracle or affirmation deck that resonates with you. I love the simplicity of the Mini Moon Oracle set, which I downloaded for free from Spirit de la Lune, because it’s just one word that doesn’t need any other interpretive guidebook to understand. Each morning, I take a few deep breaths, ask the Universe for a focus that will benefit me that day, and draw a mini moon from my bag. Throughout that day I mentally come back to the word and see how I can fit it in to support my well-being. As an example, I recently picked “Flow”. As my day progressed and at times got chaotic, I reminded myself to just flow with it, not fight with it. Things that would usually get under my skin were let go as I reminded myself of the bigger picture. The following day I ironically picked “Ebb,” so I carved out time that day to withdrawal into myself in healthy ways to engage in self care.  Each day, these guiding words have been helpful in different ways.

PicsArt_03-15-11.50.31

These strategies may not change the outcome of my cycle, but at least I’m finding this TWW a bit more tolerable than ones in the past.

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To women going through infertility…

22 Thursday Feb 2018

Posted by thenotsofertilegoddess in IVF #6 with Fresh 3-day Transfer, Uncategorized

≈ 1 Comment

Tags

Coping, Infertility, IVF, support

I feel the need to send some support out there to all the women struggling with infertility. To those women who have ever felt that they were drowning in infertility treatments, like their life was one never ending IVF cycle. Those who think about getting pregnant all the time, stare at home pregnancy tests squinting to see lines, and consume so many supplements they can’t even fit into one of those weekly pill containers.  I want you to know, you are not alone. You are not crazy. And you are not broken.

I was recently telling someone about what it’s like going through infertility treatments. In my defense he caught me on a rough day, but nevertheless I ended up sounding like a crazy person. When you spend years battling infertility, having multiple surgeries, treatments galore, and are in the middle of your 6th round of IVF, you look back and realize you’ve done a lot of crazy shit in the name of procreation. It becomes all consuming.

On that particular day, I confessed that while I would prefer a coffee, I was sitting there drinking tea that tasted like dirt because it was high in antioxidants, which is good for my eggs, and the other herbs in it are uterine tonics. Since it was my day off, I was planning on going for a long walk on my favorite trail to help improve blood flow to my uterus. Then I planned on taking a bubble bath, which I find soothing, but it also helps increase circulation which is good for my ovaries and uterus. Later that weekend, I’d be going to my friend’s house for her birthday and celebrating with one glass of wine. While I’d love to have more, I won’t because, you know, egg quality. But having just that one is okay, according to my RE, because it dilates blood vessels thus increasing blood flow to my uterus. The man I was talking with looked at me like I was an alien.

I’ll confess, this man is my therapist. I decided to go see someone after my last IVF cycle ended in 2 PGS abnormal embryos and no transfer. I was devastated, my husband was devastated, and I felt like I was exhausting my coping skills. I wanted someone to talk to that wasn’t my husband or one of my fertile friends. Someone I could say all of the dark things to who wouldn’t judge me. So yes, I’m a psychologist seeing a psychologist, and that feels a bit weird to me. I know it is the healthy choice and many therapist need therapy from time to time, but I’m like one of those doctors who avoids going to the doctor. I knew I needed to go though, after I started snapping at my loved ones. That’s not who I am or who I want to be. Infertility is HARD and we need support.

So there I was, sitting with a man who is really being kind and supportive, but I can tell he thinks I’m being excessively obsessive. And I completely am. But that is also completely normal when you are going through infertility. It happens to most of us, maybe even all of us who are at this long enough. It’s normal to want to do every little thing you can to try to improve your chances when the stakes are this high. When you are putting your body, heart, finances, and soul through so much. If medicine advanced to the point where our RE’s could tell us that “x, y, and z” will give you that positive pregnancy test, so don’t bother doing all the other silly things you read about – well, we’d all jump on board and do those things and get our babies. But that’s not the way it works. Even when we have every piece lined up, we still end up with failed transfers and negative tests. Science simply cannot control human reproduction – it’s too complex, too fragile, and possibly too magical.

So as long as our doctors can’t guarantee that treatments will work, as long as multiple women do the same thing but have different results, as long as things remain “unexplained,” we will always do our best to shift the odds in our favor. Whether that be this supplement or that, yoga, meditation, affirmations, tapping, castor oil packs, one more diagnostic test, exploratory surgery, the keto diet, the paleo diet, cutting out sugar, coffee, and alcohol, juicing, prayer, intentions,  pleading and bargaining, or standing on your right foot for five hours every full moon (okay I’m making up that last one) – we will try it.

And we will not be alone. We are not crazy. We are not broken. 

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To PGS or Not To PGS – That is the question!

31 Wednesday Jan 2018

Posted by thenotsofertilegoddess in IVF #6 with Fresh 3-day Transfer, Uncategorized

≈ 2 Comments

Tags

IVF, PGS Tesating

When I started out on my journey for baby 2.0, I was pro-PGS testing. Completely on the PGS bandwagon. It sounded like a dream technology – something that will eliminate the concern for having a baby with a serious health problem, drastically reduce the risk of miscarriage or still birth, and increase my chance of pregnancy. And at age 40, that sounded too good to be true. But what if it is too good to be true?

After having a PGS normal embryo fail to implant at my first FET, I was shocked and devastated. After 3 subsequent rounds of IVF, 2 that resulted in no embryos even making it to blast for testing and the other ending in 2 PGS abnormal embryos, I began to seriously question the approach. The more I read about PGS testing, the more I carefully climbed down off of the PGS bandwagon. I started to read that although PGS is often recommended for older women, these older women, as well as women with diminished ovarian reserve (DOR), are the very women that may benefit least from PGS. In fact, it may actually lower IVF success rates!

There are several factors involved here. First, if you struggle to make blasts you may not even have anything to test on day 5. That means no transfer, which equals a zero percent chance of pregnancy. You might as well have saved yourself a bunch of money, shots, and ultrasounds and just had sex instead. At least that would give you some chance of pregnancy.

Second, more and more studies are coming out that call into question the accuracy of PGS test results. At my RE consult today, my RE pulled out a medical journal to show me a research study that was published just a few days ago where they transferred mosaic embryos. A lot of them. This was done in Italy. I didn’t have time to read all the details but the study found that all the mosaic embryos transferred made healthy, normal babies. In conclusion, the authors suggested that we should be transferring mosaic embryos and warned of how many babies are essentially being “thrown out”. This gets complicated because mosaicism isn’t necessarily an all or nothing thing – it comes in percentages – and some labs don’t even differentiate and instead call all mosaic embryos “abnormal”. But it doesn’t stop with mosaic embryos. Last year my own RE told me about a study he did where they biopsied embryos at day 5, but also immediately transferred one of the biopsied embryos during the fresh IVF cycle. That means they got the PGS results after the embryo was already transferred. One of the results came back abnormal (not mosaic) – it was an abnormality that was supposed to be incompatible with life. My RE and the staff all waited for this poor women to miscarry, and to their complete shock she did not. That baby is now a healthy bundle of joy. And there are lots of stories like this.

Furthermore, when you biopsy for PGS you are taking cells from the trophectoderm (TE), which becomes the placenta. Studies are showing a) that the TE contains more abnormal cells than the inner cell mass (ICM) that becomes the baby, b) that abnormal cells may even be pushed out into the TE to keep them out of the ICM, and c) that they may self-correct down the line after the blast stage. So when you are only biopsying the TE are you really able to make an accurate assessment of the baby? Maybe not.

One point that I found interesting in the articles I read explained that mathematical models demonstrate that when you only have 5 or 6 TE cells (a typical PGS biopsy) the rates of false negatives (saying an embryo is normal when it’s not) and false positives (saying an embryo is abnormal when it’s not) is simply too high to accurately determine whether those cells accurately reflect the ICM. Let me say that again – math says you just don’t have enough data to make a reliable determination.

I could go on, but I’m just going to link to some articles so you can do your own reading, if you care to. That being said, I do think PGS has its place.  If I made lots of blasts it could be a useful tool for helping my RE select which embryo to transfer. After all, when you have lots of blasts and several PGS normal embryos, the error isn’t as harmful. I can also see why women who have had several miscarriages would opt for PGS testing in an effort to improve the odds. But that’s not me either and I don’t have many embryos to work with.

For more reading on PGS, check out this study, this one, here’s another, and one last one. I wish I had a link for the Italian study my RE showed me today, but I don’t have electronic access to that medical journal. Ultimately it’s a hard and personal decision. Given my history, I’m not going to do PGS testing next time.

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The DHEA Debacle

04 Thursday Jan 2018

Posted by thenotsofertilegoddess in IVF #5, Uncategorized

≈ 2 Comments

Tags

DHEA, Egg Quality, IVF, Supplements

DHEA. It’s that supplement that’s often touted as a magical egg quality enhancer, and it seems there’s some good research to back that up. That doesn’t mean it’s good for everybody, and I’ve learned that the hard way.

I first read about DHEA in the book, “It Starts with the Egg,” which is a great book for women who are looking to improve egg quality and enhance fertility. Like every good student, I diligently read every word. Still, I was uncertain about DHEA as I knew it impacted hormones. My doubt was quickly set aside when my RE recommended I take it, along with a laundry list of other supplements, to help improve my egg quality when I first went back to him to begin the IVF process again at age 39 (and 8 months). I assumed that because my RE told me to take it that I should. Not really my smartest move. The problem is that my RE never tested my testosterone, which DHEA can increase.

I didn’t think much about it during my first IVF for baby #2. We got a PGS normal embryo and I thought all was well. After the FET failed we went right into another egg retrieval. When that one was a bust – resulting in zero blastocysts – I began wondering about my testosterone level. At the consultation to prepare for yet another egg retrieval I asked my RE about testing my level and he said we could. Then, unexpectedly, we changed protocols and started stimulation meds that same day. So there wasn’t any time for testing. During a monitoring appointment I asked the physician assistant who was doing my ultrasound if we could get that test done, and she said that it wouldn’t be good to do mid-stim cycle because my hormones would be all over the place. After that one failed too, I brought up the topic again with my RE. That time we had time to test as I waited for my period to start. I got the results on cycle day 1, which was also the day I began my meds for this current round of IVF.

When the results came back they were high. My intuition was correct. Honestly, I was irritated that they never bothered to test this before and I regret not testing it from the very beginning. The RE instructed me to stop DHEA cold turkey that day. I was told that high testosterone “could” suppress follicle growth and “possibly” negatively impact egg quality, though there aren’t definitive answers on this. He also said that my testosterone level would drop back to normal quickly, so that by the following week when my follicles are doing the majority of their growth, there won’t be a negative impact. What I didn’t ask was, “is the damage to my egg quality already done?” I’m thinking that since eggs take about 3 months to mature, it might not have been good that for the majority of those 3 months my testosterone was high. But I don’t know what, if any, impact testosterone could have at that early stage. I’ll hold that question for the next consultation if it comes to that.

I decided not to worry about this as I’m going forward with the cycle anyway, since the potential impact is really an unknown. There’s nothing I can do about it now. I’m hoping that I stopped in time to mitigate any significant harmful effect, and keeping my fingers crossed for finding that golden egg.

Tonight is my trigger shot for a retrieval on Friday morning. We are expecting about 7 eggs based on my follicle count and size. I feel like an old pro at this egg retrieval thing, but I hope this can be my last one.

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IVF #4 – Trying a Mini!

29 Wednesday Nov 2017

Posted by thenotsofertilegoddess in IVF #4, Uncategorized

≈ 4 Comments

Tags

ICSI, IVF, Mini IVF, PGS

I went into my follow-up consult on cycle day five, just hoping for some fresh ideas to improve egg quality, and I didn’t want to hear anything fatalistic. I led off by telling my RE, “I know I’m 40 but I’m not coughing dust yet!” And like always my RE delivered. He’s not giving up on me or my eggs, and he was ready to change things up with my protocol. I have no idea if his new plan will work, but I am so grateful for this doctor who is compassionate, intelligent, humorous, and takes the time to really answer questions and explore options with me.

He reviewed the lab’s report for exactly how my eggs fertilized and what my embryo growth patterns were like. It was clear that we are dealing with egg quality, not sperm issues. He said he was really surprised that none made it to blast and they weren’t expecting that. The cycle before I got 1 PGS normal. Could it have gotten that bad in 4 months or was this a bad batch – he said it’s hard to tell now. But he created a new plan to move forward that focuses on quality over quantity.

We are doing a mini IVF. The idea here, which I’ve heard rumor is great for women over 40, is that less stim meds are used to create fewer eggs, and that hopefully allows those eggs to soak up all the resources and energy needed to improve their quality. I’m ready to try this and I was getting worried about the high doses of meds I had been on. Injecting all that stuff can’t be good long term, right?

While there are many different mini stim protocols, mine involves clomid and menopur, then later adding ganirelix to prevent early ovulation. Although I know clomid isn’t always great for women over 35, I’ve responded to it quite well at that age. Plus we are not solely relying on that. We’ll also be doing HGH a bit longer this time  – starting on day 3 of stims, simply because I wouldn’t be able to have it in time for day 1, and continuing until trigger shot. And the reason for not having it in time for stim day 1 is because I began my mini stim the night of my consultation! My RE didn’t want to waste any time so he had me start clomid that night and use some leftover menopur from last cycle. He whisked me in  for a baseline ultrasound which looked all good to go.

And so we are jumping right back in. I’m ready. The rush at the beginning to get my meds lined up was a bit nerve racking, but everything is ordered. I also had to use gonal f instead of menopur for the second day until my new meds arrived this morning because I didn’t have as much left over from last cycle as I thought. I was assured it was fine this early in the cycle since we are focusing on FSH at this stage, and both are FSH. My clinic would have given me the needed menopur but they were all out too, so gonal f it was.  I took my clomid at night for the first 2 nights and then switched to morning administration on the third day because my nurse said it’s better to take them in the AM before the ultrasounds. Changing the timing of the meds that much makes me nervous because I’m so used to them being very specific about sticking to certain times so the body has what it needs on time. But my nurse assured me that we have a lot of flexibility during the first 5 days of stims and that sticking to specific times is more important later. There’s nothing I can do about any of this now and worrying won’t change anything. So I’m letting it go and trusting that they know what their talking about.

My RE told me that there is a special medium filled with antioxidants and other goodies to “supercharge” my embryos as they grow. The idea is that this enhanced medium can better support “older” eggs in doing what they need to do. We didn’t use that last cycle because he didn’t anticipate that the quality would be as compromised.

We also discussed PGS testing and ICSI. I was concerned that maybe ICSI wasn’t working well for me and maybe we should go back to natural fertilization. My RE explained that it’s actually better on older eggs to do ICSI because the egg doesn’t have to expend a significant amount of energy pulling in the sperm. Who knew. I was pleased with our open discussion about PGS. He readily admitted that some embryos can self correct, although it is rare. He told me about a research study he did where they PGS tested embryos but put back some before the results were in to compare outcomes. He said they put an embryo back in a women and later found out it was abnormal (I forget which chromosome abnormality it had). They were all worried and expected her to miscarry, but instead she delivered a healthy baby. He explained that there are a few chromosome abnormalities that we know are incompatible with life and/or lead to significant healthy problems (I can’t remember the ones he said). Those won’t self correct. But the others, well, they just might. He said that when PGS results come back with multiple chromosome deletions or additions, then you can be confident in those results. But if the abnormal finding is do to just one chromosome issue and it’s not one of those dreaded few, then there is a possibility that the embryo could self correct or the result could be inaccurate.

I also asked about the studies showing significant variance in PGS results across labs, indicating that results just aren’t very reliable. He acknowledged those and said that you have to be careful in interpreting the results. He said that you aren’t going to find that anymore among top labs. And that’s when I put back on my psychologist “hat” and remembered what I already knew about research. People readily tout research studies published in peer reviewed, scientific journals as facts. But that simply isn’t true. A motto that was ground into my head during graduate school was, “the devil is in the interpretation.” There are issues with what the labs do, how the research is designed, and what statistics are used – even in published studies. Sadly way more often that you think, the conclusions that authors make to explain their research outcomes are simply not supported by the data. And yes, these are even published in top journals. There are often flaws in research methodology and statistics that do not support the reported conclusions. In every single graduate course I took, we had to tear apart published studies to find the flaws. They were everywhere. Now you might say, “yes but  that was psychology and this is a different topic,” however, the statistical analyses and research designs are all exactly the same. It’s math. The sad reality is that most health professionals do not have the statistical expertise to see study flaws in published work. My Ph.D. is from a research-focused program. It’s what we do.

Given all of this, I asked my RE what he would recommend to me. He said, “there are worse things than not getting pregnant,” referring to still birth, late miscarriages, and severe health disabilities.  That is true, at least to me. He advised doing PGS and agreed that we would review the results together to determine if any abnormal findings fall into the category of only one chromosome issue and that being outside of the “dreaded few”. If we have any like that – that could possibly self correct and/or be an inaccurate result – then he would do the embryo transfer if I wished. I’m comfortable with this plan as I believe it gives me the peace of mind in hopefully finding  a chromosomally normal embryo while reducing the chance of discarding one the could have made it.

So that’s the new plan for IVF #4. My first ultrasound is in 3 days!

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Taking a Moment to Remember

02 Thursday Nov 2017

Posted by thenotsofertilegoddess in IVF #3, Uncategorized

≈ 4 Comments

Tags

Birth trauma, Healing, secondary infertility

*Trigger Warning* – I just want to give an upfront warning to those struggling with infertility who might not be in a place where they want to read about another person’s experience with birth. This is that kind of post.

PicsArt_11-02-02.13.28

It was 3 years ago today that I went into labor. Well by this time I had already been in labor since 2AM. My daughter’s birthday is tomorrow. So, yes, it was a long labor. About 32 hours. Each year since her birth, these two days have given me pause. They bring up such a mix of intense emotions – many of which are hard to name. This is the first time that I’m actively trying to conceive again during her birthday, and it seems like that is adding another twist to the emotions.

Like every good student, I studied up on all my birthing options and put together what I considered to be the best plan for supporting the beautiful, natural birth I had envisioned. I found an excellent team of nurse midwives who could deliver at my chosen hospital. The nurses who generally worked with the midwives were on board with natural, flexible birthing options. They were backed up by OB’s who respected their judgment. My doula was caring and experienced, and was studying to become a midwife herself. I wrote both a birth plan and a baby plan. I had practiced hypnobabies diligently in preparation. My bag was packed. My mind was filled with images of strong women crouched down, birthing their babies into their own arms. I knew to be flexible despite my planning, because things don’t always go as planned. I wasn’t that naive.

But I truly did not expect what happened. I spent thoughtful time after her birth processing what had happened. Long story short, although I was completely dilated, pushed for 4 hours, and could see the top of the baby’s head for quite some time, she simply would not come out. Due to the lengthy session of strong pushing, she was so tightly lodged in my pelvis that they actually had difficulty getting her out during the emergency C-Section. We later found out, informed by the OB who performed the C-Section, that the bone opening the baby had to pass through was 1.5 inches to small in diameter. It wasn’t that my child’s head was too large, it was simply my structure. He said I would never be able to birth a full term baby. My midwife actually agreed that there was nothing we could have done differently to have a different outcome. And we had tried every natural option and strategy they could think of. I felt okay at the time, knowing that the C-Section really was medically necessary and not a result of a cascade of medical interventions. While I was at peace with that knowledge, and felt grateful for the advances in medicine that helped me both conceive and birth my child – neither of which would have been possible years ago – that didn’t take away the birth trauma. I talked to both my midwife and doula at later appointments about what happened. I processed the trauma successfully.

Now, at this time of year, I light a tealight in a goddess candle holder that I only use for this purpose. For these two days I honor that birth. The birth of a daughter. The birth of a mother. I acknowledge the unbearable pain that I found the strength to bear. I remember feeling let down by the team I built around me who were supposed to give me support. I remember feeling alone, scared, and confused. I remember speaking up for myself even when I only had a few words. I honor my voice.  I honor my body for all that it did despite the parts that it could not do. I hold space for both the sadness and the joy.

Many people are quick to say, “as long as she was born healthy – that’s all that matters.” I am grateful beyond words that my daughter, who had to be revived three times after this traumatic birth,  came through it healthy and safe. I would have endured anything for that. But it’s inaccurate to say that that is all that matters. Birth matters. A woman’s experience matters.

I feel blessed to have gone through that transition into motherhood. And I honor it in all the chaos that it was. I hope beyond words that I get to experience birth again in all it’s raw beauty, power, and pain. I know many women on this path never get to give birth to a baby, and I am grateful that I have. And yet, still my heart yearns for one more child.

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The Stages of Grief – IVF Style

12 Monday Jun 2017

Posted by thenotsofertilegoddess in Uncategorized

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There’s always good news and bad news, isn’t there? First the good news: egg retrieval went excellent. They retrieved 12 eggs! I was shocked and happy. Really I was riding cloud 9 for the rest of the day, feeling confident and excited. Then I waited for my fertilization report the next day. Last time I had a great fertilization rate so it didn’t occur to me to expect anything less. But then the call came and I was hit with the bad news. Of my 12 eggs, 8 were mature (not bad) but only 4 fertilized and are still alive. I literally lost my breath. How could this have happened? My nurse explained that 3 of the other eggs died immediately after being fertilized and the other one is barely hanging on so they don’t expect it to make it. Given these outcomes, she said they believe it’s due to egg quality. And there it is again – my age.

After I got this news I started to go through some familiar reactions. I remember feeling these ways at various points the last time I did IVF too. I’m going to call this the Stages of Grief – IVF Style. These are not based on research, just my personal experience as a mindful psychologist. But I venture to say that if you have ever been through infertility treatment, you will no doubt recognize some, if not all, of these stages.

Stage 1: Emotional Tidal Wave.  As soon as I heard the bad news I was hit with a wave of intense emotions. I could literally feel them hit my body. Sadness, fear, disappointment, shock. I went from confident that IVF will work to the stark realization that I may not get a baby from this. In fact, it felt like I had already failed. My heart pounded, heat flooded my body, my stomach and throat tightened. It was like the floor fell out from under me. These are uncomfortable feeling. Really uncomfortable. Because it’s so uncomfortable it’s easy to slip past this and move on to the Second Stage: Anger. Anger is a secondary emotion that often masks primary emotions that are felt in Stage 1 because anger, although far from pleasant, is easier to deal with.

Coping in Stage 1: First I want to note, that these stages may not always be linear. I found that I actually circled back to Stage 1 after I moved into Stage 2. And that’s a good thing. It’s healthy to feel and work through the tidal wave of emotions. So even when I moved on to anger, eventually I circled back to deal with what was actually underneath my anger. And I had a good cry. The release felt good. It’s important to acknowledge and sit with these hard emotions. We need to feel to heal. That doesn’t mean that we want to get sucked in despair for long periods of time. When these feeling become overwhelming for too long, there is an increased risk for depression and anxiety, which is understandably common with infertility. Some other things that can help in this stage are talking to a supportive person, creative expression of grief (e.g., writing), mindfulness practices, and meditation , to name a few. These are all practices that help you experience emotions without hiding, denial, or escape and can help process the emotions to lessen their power.

Stage 2: Anger.  I switched gears to focus on anger. This change happened automatically as I pushed past my sadness. Anger that my supplements didn’t work better. Anger at my age. Anger at my reproductive endocrinologist (RE). Anger at the embryologist. Anger is a fiery emotion. It’s easier to deal with because the other emotions can be really dark, scary, and isolating. Both feeling and expressing anger is highly influenced by culture, gender, and religion. For me, in my culture, anger is acceptable. Due to the intense energy of anger, people are often motivated to action. Anger made me second guess my doctor’s protocol for me. Why didn’t he include HGH during my stim cycle since he knew egg quality was an issue? Would my eggs have fertilized better if we used natural fertilization like we did during out last IVF rather than ICSI? Did the embryologist damage my eggs during ICSI?

Coping in Stage 2: When anger is front and center, it’s important to funnel that in a healthy rather than destructive manner. Don’t lash out at your partner. This isn’t their fault. Similarly, don’t take it out on yourself. You really didn’t do anything wrong and you don’t deserve this. For me, getting out in nature helps me diffuse my anger enough to help me focus it productively and move into stage 3. I find going for nature walks, taking some calming breaths under the moon, walking a labyrinth or using my hand labyrinth, or talking a bath can help calm my anger. Any healthy distraction will do.

Stage 3: Research and Planning. Fueled by anger and armed with 100 questions, like every determined IVF patient, I rushed to the internet. Google and Facebook groups are both a blessing and a curse for IVF patients. I found support and comfort from women who had experienced just what I had. I read stories of women who similarly had just a few embryos and those embryos made it to biopsy and were found to be normal. These stories were comforting, reassuring. I also saw so many women that had canceled cycles due to poor response or ended up with no embryos after retrieval. These stories made me feel grateful for the chance that I still have. I learned that a 50% fertilization rate for a practically 40 year old is actually really good. Why didn’t my RE tell me that ahead of time? But not all of the things that I found on the internet were helpful. I discovered that, contrary to what my RE had told me, ICSI isn’t necessary for PGS testing. In fact, the newest biopsy technologies allow for either type of fertilization. I was irritated that my RE hadn’t informed me about that option. One women even suggested that my RE’s motives were questionable for recommending ICSI without a sperm quality issues (suggesting he did the procedure for the money) and recommended I find a new clinic. Wow. I had to step back. Literally back away from the computer. I had to stop jumping to conclusions and acknowledge that there are several reasons why my clinic prefers ICSI, and that the internet did not know all of the factors in my infertility. But I did learn some new and good information, so I wanted to be productive with that. I turned all of my second guessing and research into reasonable questions that I tucked aside to discuss with my RE if we end up needing to do another round of IVF. I turned my anger into something productive, and I set the product aside for later. For later. Because there is nothing that I can do about it now.

Coping in Stage 3: I think the trick to this stage is finding that balancing point between constructive and destructive, and staying on the constructive side. I can use the support I find from others in online infertility communities to help me manage my reactions in stage 1 and 2, and use the information I learn from them to help me compose a list of questions for my RE. Armed with a list of questions and ideas for things to try differently next time (should we need a next time), I feel empowered. The trick, however, is knowing when the internet becomes your enemy. And it does eventually happen. People give “advise” and don’t have all of your medical history and may be making recommendations that are beyond their training and qualifications. It’s easy to catastrophize and self-diagnose with infertility problems that you don’t actually have. At some point, I think it’s important to make a decision about whether you trust your RE or not. Certainly some clinics are pretty questionable and it’s important to be your own best advocate. But at some point, if you decide your RE is qualified and good, you have to put your trust in them, and remind yourself of that when times get tough. Asking questions and being educated is important, but you also have to be able to be honest with and trust the person that you are working with.

Stage 4: Acceptance. That brings me to acceptance. The realization that what’s done is done. I cannot go back in time and change anything. I’m not even sure if changing anything would have led to a better outcome. So I had to let it go. The fact is, I have 4 embryos growing. I know they might not all make it to day 5 or 6 for the biopsy. I know that drop off is normal from day 1 to day 5. I certainly experienced that before. If we are lucky enough to have some continue to grow and be biopsied for PGS testing, I don’t know what the results will be. I do know the statistic that 60% of embryos at my age are abnormal, but that is an average that does not tell me what my results will be. So there is nothing I can do but accept what has been done, and wait for what will be.

Coping in Stage 4: Once you have your list, it’s important to set it aside and focus on the present. There is nothing you can do to change the past. Regrets and worries won’t change the future. All the worry in the world won’t change the outcome, it will just drive me crazy. I remind myself of that to find acceptance.

Stage 5: Hope.  At some point during IVF we find ourselves in complete despair. Hope is absent and no glimmer of it can be seen. We don’t know how we will ever find hope again. Yet we do. It’s what keeps us going. Somehow, after I accepted where I was in this, stopped trying to change it or fight against it, I’ve found a way to regain my hope. I’m focusing on my 4 little possibilities. Hoping that one of those 4 embryos will be strong and healthy to become my baby. I remind myself that it only takes one.

Coping in Stage 5: How do you find hope? How do you hold on to it once you’ve found it? I’ve heard many women in this simply say that eventually it comes back. They just found hope again. It might be that mysterious. Some people find hope in their believes – spiritual, religious, or simply their unyielding desire to have children. Personally, I find a lot of my hope through my spiritual beliefs and connections. It’s something I hold on to or come back to when I’ve veered away. It’s familiar and comforting.

*******

So now I sit here, the day before I will find out how many of my embryos grew into blastocyst stage and were successfully biopsied for PGS testing, and somehow I managed to make it all the way to stage 5. I’m hopeful that I will get good news tomorrow. I’m hopeful that one of those tiny 4 embryos will eventually become my baby. And I wait.

 

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