Follow me on the crazy, hopeful, discouraging, funny, and ultimately successful (one way or another) path to parenthood while facing infertility.

Sunday, April 21, 2013

Join the Movement: Being A Proud Voice for Infertility



Happy National Infertility Awareness Week (NIAW)! It's hard to believe that another year has come and gone and it is time again to spread awareness and accurate information about the disease of infertility, its many effects on the people who live it with it, and the many treatments available. This year's blog theme is "Join the Movement" -- how you have contributed to the movement of infertility awareness and education in ways big or small.

I started this blog in September 2010 with a post titled "To Share or Not to Share". It explained my purpose in writing a blog about my infertility journey, which had just ventured into the exciting and terrifying world of IVF. I had experienced my first in vitro cycle and my first failure, and was floating in a sea of sadness and confusion. IVF was supposed to be my silver bullet and the first attempt that seemed so promising had resulted in two decent 3-day embryos, no frozens, and a big fat negative test. Despite the fact that I had had 24 or so follicles on my last ultrasound before the egg retrieval, the results were pretty dismal. I was involved in not one but two support groups, a fertility yoga class, and had been active on an online forum site. But I was feeling frustrated--outside of these groups very few people knew what I was going through. The people who did know found themselves getting quite the education from me on how lady parts and the miracle of conception works. But I felt disingenuous, because I was still holding all of this very close. I wanted to share my story with others and process it through writing a blog, and I wanted to let others know that they were not alone who may not have support groups at the ready (or who were involved with support groups but still feeling pretty alone). And so I decided to share my story, publicly. I write this blog completely and totally openly. It has been posted on my Facebook page from day one, and so it is the farthest thing from anonymous. Not everyone reads it, but it is somehow always shocking to me when I see how many reads there are within hours and days of putting a new post up. Not everyone thinks that I have made the right decision to be so open in my journey to motherhood, that it is "no one's business" and perhaps uncouth to share so much about doctor's appointments, the internal ultrasound process, what follicles on my ovaries look like, or information about what it really and truly feels like, physically and emotionally, to have a miscarriage. But I don't do this for them. I do it for me, but I also do it for the people who message me either privately or publicly. Many comments come privately via messenger or email, people I had no idea were struggling with infertility (secondary, recurrent miscarriage, unexplained, you name it) but who say that the blog has resonated with them. Or they have shared it with friends or family who are going through something similar because my honesty about the process and particularly the emotional journey of infertility really hits home and explains what they perhaps cannot. This makes me feel awesome, because while I am definitely not a fan of being a long-time fertility patient, I am thrilled that in some way I am able to educate people and give a voice to the experience of infertility and loss. This is how I have joined and embraced the movement, by educating people and sharing, even when difficult, especially when difficult, what it is like to suffer the disease of infertility.

Which is why I have felt very conflicted lately. I pride myself on honesty in this process. I share thoughts that can be ugly, "unladylike." I explain the pain of jealousy and feeling left behind, even within the infertility community. I explain my frustration in how TV, books, movies, and magazines portray infertility in unfair and completely biased and/or inaccurate ways. I try to be sensitive, but there are just so many ways that the world is a minefield of pain for those going through infertility, especially those who have been at it for some time with no real success and a sense of stagnancy while the rest of the world, even fellow infertility patients, get their happy ending. So, while I pride myself on honesty (no matter how painful), and on transparency in my journey so that it is clear just what all of this feels like and how difficult the choices are that people in my shoes have to make all the time, I have been dishonest lately. I have hedged around an important issue. And I feel like, 9 months after making this decision, that I am finally ready to go back to being utterly honest for the sake of giving a voice to infertility despite how scary it is for me (and for my husband) to be honest.

I am diagnosed with PCOS with ovarian dysfunction. I don't ovulate on my own. My husband is diagnosed with male factor infertility, so without IVF with ICSI (injecting individual hand-picked super sperm into an egg in order to give fertilization a shot due to poor motility, overall counts, and morphology) we would not get pregnant. But now, 3 years, 4 fresh and 2 frozen transfers into the world of IVF, it has become apparent that something else is wrong. I have a fabulous uterus, supposedly. The miracle of ICSI has made male factor not really so much of an issue anymore. But still I cannot get or stay pregnant. Sixteen embryos have journeyed into my uterus, and none stayed. One freakshow ectopic pregnancy (through IVF! Please explain this to me when they put the embryos INTO YOUR UTERUS... that embryo had wanderlust apparently), and one early and devastating miscarriage are all the positive results that I have to show for all of this hard work and expensive medical treatment. Now it makes sense, but from the beginning we had just enough improvements to lead us to believe that we still had a fighting chance, excellent odds even, of getting pregnant via IVF. After two miserable cycles that produced a ton of follicles and very few viable embryos (none to freeze), using PCOS protocols, we switched it up and tried a new protocol. An egg quality protocol. A protocol that a friend of mine used who has premature ovarian failure (POF). I was a little concerned, because I don't have POF. My FSH levels have been very good, indicating a fabulous ovarian reserve. Before my last fresh IVF cycle last spring, I had AmH levels tested (the new gold standard in determining how many eggs are in your basket), and I came out like a champion. So why is it that the new protocol, the one that resulted in a misplaced pregnancy and a short-lived pregnancy and a grand total between two cycles of 5 frozen embryos, was the best one yet but was also the one meant for women with poor egg quality? Something fishy was afoot. We have had beautiful, textbook-quality embryos. And we have had some funky looking embryos. I always thought about support group and the women who said "ugly embryos can make beautiful babies" -- that you can't always tell true quality from the appearance alone (go figure). An embryo can look beautiful but be chromosomally faulty, resulting in poor implantation rates and yes, early miscarriage. Uh-oh.

After our hideously depressing and devastating pregnancy loss last summer, we had to take stock. We had to figure out what was really going on, because at this point we were at a crossroads. We could not continue on with the status quo and expect some miracle to occur. It had not happened and, quite frankly, I was exhausted. We wanted to know--what were our options at this point, really? Because I WOULD LIKE TO BE PREGNANT AND GIVE BIRTH TO OUR BABY. This is my right as a human being, something that many people don't have to give a second thought to. I have a medical condition and I deserve the right to treat it how I see fit. I deserve the right to build my family using the choices that are available to me, based on my own stamina and financial capability and dreams that I hold. Dreams and hopes and a picture of a future that most people have and don't realize are so incredibly fragile.

Infertility is like a strip poker game that isn't any fun. You start off wearing all of your clothes, your hopes and dreams for having a family like so many can do with a carefully planned night of romance. Then you shed your overcoat with the fertility consultation, your first clomid cycle or IUI. You accept that you are going to need medical intervention in order to make this family happen. You accept that now instead of a sexy night in you will be exposing your lady parts to a variety of nurses and doctors and a scary-looking catheter will be delivering the sperm to your waiting cervix and supposedly ovulated egg. This takes time to accept, but in the desire to have a family it is worth it. If you are lucky (as I was) you have insurance coverage for IUI, and so it costs a hundred dollars or two after copays and prescription drugs and blood draws. If you are not lucky and do not have insurance, this portion of the journey costs hundreds of dollars per shot and starts the financial drain that makes future options harder. If you succeed here, you have a hard-won happy ending. But if you don't succeed, your choices dwindle. You need to take off another layer and accept that either you need to move to IVF (which is hard physically, emotionally challenging, and fiscally difficult), move to adoption (which is emotionally challenging, fiscally difficult, time-consuming, and not at all a "just"), or choose to be child-free (which is emotionally challenging and difficult in its own right). I chose IVF. I chose to shed more layers and accept that now conception would occur outside my body, that now I would be exposing my ladyparts to a vertible roomful of people while unconscious, and that we would have better odds but no guarantee of success (no option gives you a 100% guarantee of success, just ask anyone who has suffered a failed adoption). We would also need to put ourselves in a financial holding pattern. This is an option that not everyone can afford, because there is no comprehensive mandated health coverage for IVF. Which is a sin in itself because not only is IVF an amazing family-building medical treatment for a disease, it is a diagnostic tool that can tell you more explicitly about what exactly is happening during and after conception.

This brings us to now. Or rather, the decision that we made 9 months ago. After so many failed IVF attempts, we knew that we were throwing efforts and money at something that just wasn't working. That has been very, very hard to come to grips with. This leaves me standing in my bra and undies at the poker game, exposed and shivering, because now my choices have dwindled even further and I need to give more up. We were told that we could do PGD, Preimplantation Genetic Diagnosis (or PGS, screening, since we weren't looking to diagnose a known genetic issue), if we wanted to continue on the traditional IVF path. This would mean traveling to another clinic either in NYC or NJ that specializes in this technology where one of 8 cells in a 3-day embryo is biopsied and tested for chromosomal abnormalities, and only healthy embryos are transferred, resulting in a much higher implantation rate and a much lower miscarriage rate. This would cost tens of thousands of dollars, uproot us to another part of the state or a different state for at least two weeks, and had no guarantees of success. It was very likely that all this time our embryos weren't chromosomally normal and that was why our journey had been so long and hard and fruitless. We weighed this option carefully, because it was the last option that involved both of our genetics. It did not make sense. We could invest all of this money and time and I would have to likely take a leave of absence and we could end up with NOTHING. And then be so financially drained that we had no money left for other options. Our other option was to consider Donor Egg IVF. This has been in the back of my mind for some time, given the clues that our Great Whittling from follicles to embryos has shown and the fact that the only protocol that produced good (but not happy ending) results was an egg quality protocol. The majority of the health of the embryo comes from the egg. The egg is the cell to blame when things go awry, because eggs are old (even if you are not so much). Eggs are more likely to go bad, and everyone knows that women carry an expiration date. I have said multiple times on this blog that "I am very attached to my uterus, not so much to my eggs." I didn't really think that I would have to put my money where my mouth was on that statement.

And so the decision was made. This new option that I have hinted at and danced around, the one that gives us much better success rates and is a total game-changer, this choice that we have made is to move forward with IVF, but no longer with my eggs. Whew. I have been holding that in for a very long time. Why have I kept silent? Because, while people are increasingly open about infertility and IVF treatment, there is, relatively speaking, very little out there on donor egg. It is a big step. It is a hard step. And, maybe due to human beings' strong biological need to carry on the line, to continue bloodlines, to pass on genes, it is somehow shameful to admit that you will not be passing your exact genes along. People are open about IVF, open about adopting, and some wonderful celebrities have come out and said that they used IVF in order to conceive their children. Celebrities like Marcia Cross and Courtney Cox, to name a couple. Gestational carriers are enjoying more openness as well--it is perfectly acceptable to talk about having someone else carry your own genetic material. Look at Giuliana Rancic, Nicole Kidman, and Sarah Jessica Parker. All very open about gestational carrier as a third-party option. But no one, NO ONE talks about egg donation, even those "miracle pregnancies" at 48 and older, mysterious twins born to women who could possibly have an egg or two that is still viable but that's really suspect and incredibly unfair to perpetuate the myth that you can totally get pregnant, "naturally," as you are heading towards AARP. And when it comes to the infertility community, there are a lot of blogs out there that discuss egg donation IVF. But there are not a lot of them who are currently heading towards a cycle or struggling through the process. Maybe I have not been able to do a good enough search, but when I even go to sites that have specific "rooms" for donor gametes and all the blogs I find either are pregnant or have babies/children from DE cycles, and I go through five of them and can't find a fellow person at my place in the journey, I just can't bring myself to keep looking.

It is encouraging, don't get me wrong, that the majority of these blogs are happy endings. That is thrilling and so hopeful. But it is also incredibly lonely not to be able to find anyone on the journey. It is incredibly lonely to be in support groups and have very few people who are where you are because while egg donation is a wonderful option you usually don't just jump right into it. It takes time to get to this stage in medical treatment. I have written about how the longer you are at this, the harder it is to go to support groups and feel as supported as you are a support and source of knowledge to others, and so there aren't a whole lot of people left in support groups who are at this point in the journey. I felt that there was a hole in the voice for donor egg cycles. What it feels like to make this decision. What it feels like to struggle with nature vs nurture. What it feels like to come to terms with the sacrifice you must make to have a better chance at the glorious gain. What the REALITY of the process is versus the rare and not always accurate portrayal of this infertility treatment in the media. (For one, a recent article in Glamour magazine about a sister who gave donor eggs to her sister listed the average costs for egg donation near $40,000 or so, when my donor cycle will cost us less than a NYC fresh "regular" IVF cycle. Plus the article addressed known donor eggs, but not anonymous donor eggs through a clinic program, so it was like a gentle foray into the world of egg donor where it is still keeping the family bloodlines going, not the majority of egg donor experiences which are done with anonymous donors.) There are many ways to go through this process, but I have found that there aren't as many resources out there as I would like. I have felt horribly alone. I have felt like if I shared this I would be judged unmercifully (although that hasn't been the case with the people I have shared this with in person). I have felt my own feelings of being less-than because I cannot be the one to provide my half of the genetic variables, but then joy in knowing that I provide the solution. E + S + U = P, and I am the Uterus, I am the Pregnancy. I am the carrier. I am the one whose blood courses through the embryo, nourishing it and growing it and providing all of the environmental pieces that can give it the best chance to succeed and thrive and become our take-home baby. There is actually evidence that the biological mother's genetics influence the genetics of the embryo, no matter whose material created it in the first place. It's called epigenetics, and it is exciting. There is a limit of course--if my donor had dark skin and brown eyes my momma-blood-transfer is not going to turn that baby into a pasty-skinned blue-eyed person like me. But there is signficant data on the genetic contributions from the carrier, the biological mother. From me.

I will be writing more about the donor egg IVF experience in detail in posts to come. I can only explain this feeling as having been horribly emotionally constipated, unable to process all of the complex decisions and emotions and acceptance that comes with going down this fork in the path. But now (not to be gross) I am unblocked, I am regular, I am able to let these thoughts flow and finally write the posts that haunt me in my sleep. I can be honest again.

I'm not going to lie, this disclosure is scary on many levels. Once you share you can't unshare, and that has been my mantra since the decision was tossed about in August and then committed to in September (notice how much time this process takes--we took a break and didn't start pieces of the process until November, with the first medical pieces of the process occuring in January-February--this cycle is not going to take place until sometime this summer, so it has been a LONG HAUL). Once I put this out there, I can't take it back. But I trust you. I trust that the people who will disapprove have always disapproved of my choices to continue with IVF when I could have "just adopted." Instead of going on a rant about that, I direct you to a fabulous blogger's post on that subject, here. She hit the nail on the head in my opinion. (I respect and admire people who choose an adoption journey, but this is just not my choice at this moment in time. And that's more than ok.) I trust that you will not hold this against my beautiful future child, who I am so hopeful is even closer to his/her arrival into our lives. This is a sticky wicket, because while this is our story as parents fighting to have a child in our lives, the way that we would like to fight this fight, it is also our child's story. I can't help but feel that I am robbing my future child of privacy by sharing this part of our story to have a child. We will be open with our child about the amazing medical possibility that made him/her possible and the incredible love that we had for years before he/she was born that gave us the strength to keep fighting for the chance to have that moment in the hospital where he/she is placed in our arms. And the sharing of this journey will be worth any risks involved because maybe, just maybe, there are other people who are heading down the Donor Egg IVF path and are looking for a voice that mirrors their own, a voice that helps them feel less alone and less strange for having the complex feelings that go along with making this decision and the emotional issues that arise. A voice that says it's OK to feel this way. A voice that says that egg donation is not shocking, or shameful, or secretive. I am proud that we continue to fight the good fight, just with different weapons this time. I am proud of our choice. I am proud of the strength that we have. I am proud already of the FutureBaby who we will raise to be strong and independent and well-educated on the miracle of his/her conception. And I am proud of you, non-anonymous readers, who will take this as an opportunity to be educated on a not-often-publicized facet of infertility treatment and learn about the possibilities that I am so grateful exist.

This has been a difficult journey. It has been hard on me, and hard on my husband, but we are thriving and surviving. Bryce had a request--that I end with a message to our FutureBaby. He or she (or they) need a voice, too. So, FutureBaby, I hope that you will understand why I felt such a strong desire to make public your conception story. I hope that you will understand how much love we feel for you already, and how hard we have fought to make your existence possible. I hope that you will forgive me for sharing what is really your story as well before you had a say in the privacy of your beginnings. I did it for you, so that you can grow up in a world where all manners of family building are accepted and openly discussed and no one, NO ONE has to feel ashamed about where they came from or how they came into this world (or how they brought someone into their family). Donor Egg IVF needs more voices, and I needed to be one of those voices. I needed to fully and completely Join the Movement.

Read here for more information regarding RESOLVE and the disease that is infertility:

Basic Information on Infertility
Information on National Infertility Awareness Week, NIAW


 

12 comments:

  1. I will be sending you lots of thoughts as you take your new direction. I think it is very inspiring how open you are willing to be about your new path. I love the message to your FutureBaby! Many hugs!!

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    1. Thank you so much! I cried my eyes out while writing that message. I so appreciate your support and hope all is well with you!

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  2. Jess, we don't know one another, but I strongly identified with your post! We are in the midst of our first IVF cycle using an anonymous egg donor and I just recently outed myself to our friends, family, Facebook and now via NIAW Bloggers Unite that we are using donor eggs. Whew! I will be following your blog and your journey in earnest!

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    1. Man, I love NIAW for bringing people together! I will be following your journey as well. Putting this piece out there really results in more support! Thanks for more proof that total honesty was absolutely the right decision. :)

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  3. Your letter to your FutureBaby is so very perfect. I can't wait to follow your journey through the land of donor egg IVF.

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    1. Thanks, Aimee! I so appreciate the support and hope to be a support, as well. Good luck to you!

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  4. WOW...everyone's infertility story is so different and yet so real. Decision making is one of the biggest challenges because "what if" comes up too much. For us, we longed for a baby, after 19 years we finally decided to travel the IVF road. Complications happened that caused them to be frozen and within days after, our niece decided to pour gasoline on herself and light a match, leaving behind her teenaged daughter.
    We didn't get a baby, we got an Angel instead. (that's her name) My heart still longs for the experience of going through the birthing and raising process and yet celebrates that I'll never know the grief of losing a child to suicide, hard enough when it's a beloved niece. I'll never know the heartache of watching my child suffer from a birth defect and slowly, painfully die as a teenager. In my desire of being a mommy, I'm discovering there is much more to motherhood than just giving birth, it's in the raising the child that makes the biggest impact and there's so many, many children that are crying for someone to call mom or dad, that I discovered in our own journey, life doesn't always deal us a fair hand, but it's always a great adventure. Along the way it'll be joyful, it'll be painful, but it will always be worth every moment of every day!

    Thank you for being transparent! We need it more out here in the world.

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    1. Thank you for sharing your thoughts, Deb--I'm so sorry for the horrible circumstances that brought you your Angel. There are so many different ways to become a parent, sometimes unexpected. I wish you the best!

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  5. Hi Jess, I'm here from Bloggers Unite. Thank you so much for sharing your story in such detail and for being so real about all of the emotions attached to it. It sounds like you have been through the ringer to say the least. It sounds like you have suffered more heartbreak than a person should have to experience. I am so sorry that this has been your path. I hope and pray that donor eggs are your answer. You know, I'd never really considered the fact that donor eggs aren't talked about...ever. That makes me so sad. I am sorry that you are so lonely in this. I hope and pray that somebody somewhere comes out of the woodwork and offers the support you need at this leg in your journey.

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    1. Hi Em, Thanks for visiting! I wanted to put a disclaimer in... I meant never in the context of the big conversation that is growing in the media, where if you are struggling to have a baby it's ok to talk about your options. There have been some WONDERFUL blogs out there on egg donor that I have found through NIAW's blogger challenge, but until then I wasn't able to find anything through my searches that had a person still going through it. I know people personally who have chosen this path but they do not talk about it openly outside the fertility community (which is totally their right), but it made me feel like there was this extra level of shame for choosing this option at this point in a long journey. THank you for your thoughts, and your condolences--they mean a lot! I am hopeful that this summer holds the key to the end of this journey (the physical part at least!!!) :) I hope your journey ends happily soon, too.

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  6. Hi there- I found your blog after looking around for other donor egg recipients-to-be. I am also just starting the donor egg process, after 3 failed IVFs, and so I thought I'd say hello. There aren't very many blogs from those of us going through the process. Sometimes I feel very alone, doing donor egg, and additionally not being 40+ years old (so much of the advertising/info about it seems geared towards a much older demographic- which is understandable, but doubles my feelings of isolation and being an anomaly). Anyway, I wish you much success and I hope this is the summer for both of us :)

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    1. Hello there and welcome! I agree...it is isolating AND I see the same thing with targeting women in their forties. I did find one really good article that I will repost that had several types of situations within it, including a 34 year old. I hope that my story helps you feel less alone--just by sharing it I felt much less alone and have met other DE IVFers out there. I wish you success too and hope this is the answer for both of us! Thanks for visiting.

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