Archive for the ‘Recurrent Pregnancy Loss’ Category
Post Traumatic Infertility Stress Disorder and National Infertility Awareness Week
April 2, 2013 | By: Elizabeth
We are rapidly approaching National Infertility Awareness Week (April 21-27); a week that is devoted to raising awareness of infertility and its impact on our lives. This is an important week, not just because we are discussing infertility on a national level, but because many of us may are faced with thoughts and memories that have long since been buried. Or have they? Many an infertile woman will understand very clearly what I mean when I refer to that which I call Post Traumatic Infertility Stress Disorder (PTIFSD). This is the part of our lives where we are periodically haunted by our infertility (IF) treatment, sometimes years after it has ended. Regardless of the outcome of our treatment, PTIFSD is signaled by a random flashback to one of any number of emotionally devastating moments during infertility treatment, a flashback that comes out of nowhere and is so vivid and acute that it catches our breath and momentarily disables us.
The first time I encountered PTIFSD was about two years after I had stopped IF treatment. One day I was holding my baby while on line in Starbucks and a woman came in bursting with news for the friends who were waiting for her: she was finally pregnant with twins and her beta was high! Upon overhearing this news (along with everyone else in Starbucks, most of whom probably had no clue what a beta is or why it was relevant) I had an immediate flashback to a time I too had learned I was pregnant, had a high beta and was probably carrying twins. My flashback delved further, rapidly scrolling through memories of the messages on my answering machine, including those from three nurses at my clinic to congratulate me and share their excitement about my pregnancy. Two of them gave me information that initially had not been shared with me, information which confirmed that I “must be” carrying twins, although that would later be confirmed by ultrasound. My brain spun with these memories and I became disoriented. It was only when the child in my arms, my child, grabbed my hair to get my attention that I snapped out of my seemingly trance-like state. I forgot where I was in time. I forgot I had a child. All I could remember were those happy moments of learning that I finally had a healthy pregnancy under way and the devastation that followed approximately 9 weeks later when I learned that I had to undergo yet another D&C and that my dreams were once again, dead.
While some of us do emerge emotionally unscathed from infertility treatment, many of us carry battle scars that last a lifetime. There is a cruel side of infertility treatment that people don’t often talk about and it involves the emotional scars we are left with, sometimes years after our treatment has ended and we are supposed to have “made peace” with our family building. Not many people will acknowledge that they still have bad days, get jealous or angry (sometimes very angry) over something small and seemingly benign but nevertheless powerful enough to cause a shock wave of traumatic and painful memories from our days undergoing infertility treatment to overtake us and send us into a tailspin, the likes of which we haven’t felt since. . . well since our days of infertility treatment. It has been a long time since I had a PTIFSD encounter but sadly, I had one recently and it was no easier to tolerate than was the Starbucks encounter I described above. And what struck me most was that while I understood that my infertility might still be fresh in my mind less than two years after my husband and I walked away from our IVF Clinic, I didn’t expect those same memories to carry with them the same ferocity so many years later. I mean, it has been over ten (10) years since I underwent an IVF cycle. Certainly time must have tempered my feelings, yes?
Apparently the answer was a resounding “no”. I was checking my email one morning when I received a surprise baby-on-the-way announcement from one of my childhood friends. She and I not only went to kindergarten together but we went through infertility treatment together. Despite having similar diagnoses, she went on to achieving several successful pregnancies via egg donation. I was so happy for her that I knitted a little sweater for her first born. What I experienced upon opening her email a few weeks ago, however, was hideously painful and I was left depressed, lethargic, moody and frightened. My friend had gotten pregnant by accident, in other words, without medical assistance. Indeed, much to everyone’s stupefaction, despite her age and many infertility diagnoses, she is experiencing a very healthy twin pregnancy. As I sat there reading her email I was happy for her, but at the same time I was overcome by memories of us holding hands while waiting to have our blood drawn in the morning, and the time she called in tears because she finally had to face the fact that she needed to use donor egg if she wanted to achieve a pregnancy (or so everyone thought at the time). And as I relived those memories (emphasis on the word relive) and read her email again I suddenly was overcome by anger and jealousy that I was not the one sending out the email. Out of nowhere I was overcome with a jealous rage that bordered on hate. Hatred for someone I have loved since I was so small a person? Yes, if I am truly honest I have to admit that I felt inklings of hatred for her. For the next day or so I had mood swings and bit people’s heads-off for no reason. It was only when I finally told my husband what I had received in that email that the feelings became less intense. Somehow by acknowledging my feelings I was finally able to begin to move away from this non-stop video memory spinning inside my head. Somehow this email had me caught in a perpetual mental loop of painful and devastating memories from my IF. As the memories subsided, I remembered a conversation with a therapist I had seen during and after my IVF days. During one of my sessions, she commented that what I was experiencing seemed a lot like post traumatic stress disorder; and so she and I created a new diagnosis, Post Traumatic Infertility Stress Disorder or PTIFSD.
I now have learned how to recognize and embrace the PTIFSD memories and use them to remind me of the joy that surrounds me. I hope my PTIFSD is now truly at rest in my past. But it’s okay if it is not. Because I know where these feelings come from, and that they will go away. These feelings do not control me, nor does my infertility continue to define me, instead it is the genesis of my growth as a human being, a woman, and a mother.
I recently had dinner with an infertility doctor. He asked me why I wrote The Infertility Survival Handbook and whether it had been cathartic. I told him why I wrote it – to let other women know they were not alone – but I also acknowledged that writing it wasn’t the least bit cathartic. My healing process is one that continues. Perhaps writing The Infertility Survival Handbook was my way of starting the healing process but I would be lying if I said I was finished with it.
The Infertility Survival Handbook was released during National Infertility Awareness Week (NIAW) in 2004. Today as we approach NIAW, I am thinking of all of the women (and men) who are currently struggling to have a baby. Now on its’ ninth (yes 9th!! Woot! Woot!) printing and as I contemplate writing an updated version, I think of all those women who have read my book and have emailed me, messaged me on facebook, or even called me (on a private number at home at 6am); women, who like me, struggle with the emotions that linger even after they have become mothers. PTIFSD is not yet in any diagnostic manuals, but I wish it were. I had two wonderful therapists who helped validate the emotions I was experiencing both during my treatment and well after it ended; therapists who believe in PTIFSD and its power. Not everyone has people in their lives like my therapist who invented PTIFSD, or someone that understands and “gets it”. And it is for those women I write this blog.
No you are not alone. Being unable to conceive a child when you so desperately want one, is painful. You are entitled to express that pain. You should not be shushed or told to “just relax” so you can get pregnant. And yes, that pain can stay in your heart and mind and hide there waiting to jump out and catch you off guard. That too is normal and you are entitled to express that pain as well. You should not be shushed or told “it’s over now just forget about it”.
You are not crazy. Infertility is a part of your life regardless of the ultimate outcome. It is an experience that shapes you and has the power to disfigure you – to change who you are – if you let it. If you think you might have “Post Traumatic Infertility Stress Disorder”, talk to someone. Get those feelings out. Give your feelings a name. Sometimes just by having a name, a reason, or a diagnosis gives you closure and helps you move past the feelings and you experience a sense of relief that allows you to let go. I may not be like my childhood/IF buddy who is on the verge of delivering twins. But I also am no longer be at the mercy of my memories. By being reminded that my reactions and feelings when confronted with things that trigger painful memories has a name, PTIFSD, I have been able to regain my balance. Or perhaps it is simply the understanding that, like anyone who goes through a very traumatic experience, I am bound to (at some point) relive that trauma, which has enabled me to begin to heal on a new, even deeper level.
Infertility awareness requires not only an understanding and recognition of the disease itself but of what that disease can do to us. So if all the media coverage regarding infertility in the coming days (of which I hope there is a lot), finds you feeling a little more blue (or red) than normal, a little bit more withdrawn or melancholy, remind yourself that this media coverage is triggering some old buried memories, just as that woman in Starbucks and my friend’s email caused me to become momentarily blinded by sadness, grief, and anger. It is okay that our infertility causes some of us to experience things and feel emotions long after we thought they were over. That can be a part of infertility too, PTIFSD; and it too deserves some recognition during NIAW.
The point of NIAW is to help us recognize that we should not suffer in silence, that we should band together and make people aware that infertility is a disease. What I wanted to share with you, and make people aware of is not just the medical diagnoses, but the sometimes unbearable emotional pain we feel. We also should not be forced to suffer the emotional pain in silence.
Filed under: Check This Out, Deadly Silence, Egg Donation, In the News, infertility in the media, Infertility on Television, IVF, Personal Musings, Recurrent Pregnancy Loss, The Infertility Survival Handbook, Thinking Out Loud
Tags: emotional impact, infertility, IVF, miscarriage, NIAW, Peace to Parenthood, success, The Infertility Survival Handbook
The painful silence of recurrent pregnancy loss and stillbirth. A first hand perspective and perhaps finally, a voice.
February 15, 2013 | By: Elizabeth
The shrowd of silence around stillbirth and pregnancy loss finally is being lifted. Someone is making a documentary about miscarriage, recurrent pregnancy loss, and stillbirth. This morning I watched the trailer of “Still” a documentary devoted to raising awareness of the pain of the loss of a pregnancy, a child born too soon, or a stillbirth. I think “Still” may focus more on stillbirth or pre-term delivery, but some of the articles I read as I researched its production indicated that the documentary intends to address recurrent pregnancy loss and/or miscarriage more than is touched upon in this trailer.
As I watched the trailer I was reminded of a long call I had with a new client this week. It is rare that I have a client who has a similar background to my own experience with infertility. Like me she has experienced 12 unexplained pregnancy losses (although I sort of stopped counting about a year ago when I went through it again . . . something about hitting the number 13 and I really decided it didn’t matter how many I had, I have had enough, one is enough). Only in addition to experiencing a number of first term (non-chemical) pregnancy losses, my new client also lost pregnancies in the second trimester and near the beginning of the third trimester. We had a lengthy conversation about how isolating it is, how lonely it is, how there is no person other than your partner or spouse who “gets it” (and even then sometimes perhaps they don’t totally get it because it isn’t their body), and how the silence that surrounds pregnancy loss can engulf one’s life, one’s existence. Our call also reminded me of a blog I posted about a gravestone I once saw that marked the death of fetus. As I commented in that blog, it wasn’t a pro-life stunt. It was a family who had been given permission not only to mark the death of their baby while in utero (or loss of their pregnancy) but to recognize all those other families that have suffered the same pain. In silence.
Reproductive medicine has provided so many advances to assist infertile couples in achieving their dreamed of family but recurrent pregnancy loss remains largely unexplained. While theories abound, there are far too many of us who don’t know why this happens to us, repeatedly. Reproductive medicine and reproductive law now give us the option of having our biological child carried by someone who is likely to deliver that child when we can’t. Indeed, the option to use a surrogate after experiencing pregnancy loss is perhaps the driving force behind at least half of my clients who come to me to assist them with legal agreements as they begin their journey using a surrogate. As is the case with the call and the client I just mentioned.
As many of you know, in the absence of an explanation of why my babies die, I was too frightened that a surrogate might lose my child. I couldn’t ask another woman to risk experiencing the pain I have dealt with so many times. Adoption was always something my husband and I had wanted to pursue so when we were faced with the [dreaded] conversation where our doctor told us we were out of options other than surrogacy or adoption, it was a no-brainer for us. It was going to be adoption. And as one of the women in the trailer for “Still” points out, I wouldn’t turn back the clock or make different decisions; because without those pregnancy losses I wouldn’t be parenting the two beautiful children I have now. I cannot imagine a life without these particular little souls in it. It seems like a heartbreaking price to pay but as I told my new client, one day when this is all over and you are holding your baby in your arms, it will make sense and you will know that but for all that came before (all 12 of those horrendously difficult pregnancy losses) this little baby wouldn’t be yours.
But as she journeys toward that day where she hopefully does feel that sense of peace and gratitude for the child in her arms, she is left with a huge void. She has no one to talk to. I had no one to talk to. Even my best IVF friends didn’t understand how I felt. Excuse me: how I FEEL. I still feel pain on a day that one of my longtime friend’s celebrates, the day she heard the heartbeat of each of the babies she was carrying. I don’t begrudge her that joy. I celebrate with her. But for me, inside, it always is a reminder of the miscarriage that I experienced just a few days earlier. My client and I share a special bond, one of knowing what each carries inside her and the thoughts that creep into our mind throughout the day. Thoughts that largely go un-shared with anyone.
Will “Still” do justice to this topic, to this diagnosis, to the countless women and men who have endured the loss of a life growing inside them or one that came into the world far too early to survive? I think so. I hope so. Because I would like nothing more than for women like me who are going through what I went through, women like my new client, to have a voice in the reproductive community. To have doctors pay attention to our kind of infertility. To have better resources and support groups. To just plain have a voice to express their pain. Amazing options for family building notwithstanding, the pain associated with recurrent pregnancy loss, miscarriage, and stillbirth shouldn’t continue to be shrouded in silence.
And so today I thank the people behind this documentary entitled “Still”. THANK YOU for initiating a dialogue that is long overdue.
And one final note, to all those physicians who have dedicated their careers to exploring the mystery of recurrent pregnancy loss . . . THANK YOU.
If you would like to watch the trailer click here
Filed under: Current Affairs, Deadly Silence, Faith and Infertility, infertility in the media, Infertility In The Movies etc., Infertility on Television, IVF, Miscarriage, Peace to Parenthood, Personal Musings, Recurrent Pregnancy Loss, Stillbirth, The Journey to Parenthood, Thinking Out Loud, Third-Party Assisted Reproduction
Tags: adoption, gestational carrier, hope, infertility, miscarriage, movies, Peace to Parenthood, premature birth, recurrent pregnancy loss, stillbirth, The Infertility Survival Handbook, youtube
Fear, failure and fertility: should we really continue to stay silent about these emotions?
March 28, 2011 | By: Elizabeth
I am getting over a pretty nasty bought of pneumonia. And as a result, I have had a lot of time to think.
To think about everything that I should be doing in the office but can’t. To think about everything that I need to be writing: my e-book on egg donation is pretty much finished but I haven’t had time to input the final edits or to speak with my design and production team about getting it ready for the marketplace; I have an article on egg donation and surrogacy contracts that is due to the American Bar Association in a matter of days; I have to talk to my publisher about revising The Infertility Survival Handbook; I want to write a blog about a RESOLVE event I co-hosted on March 24th at Bis.Co.Latte Cafe in NYC regarding the legal issues egg and embryo donation; and oh yeah I am supposed to be teaching a class on third-party assisted reproduction at a law school and I have to prepare the syllabus (that one may not happen).
To think about all the contracts that I need to draft and edit for clients.
To think about the new series of blogs I am working on (perhaps it too will become an e-book?) on the mind-body connection in dealing with and resolving infertility. Thanks to a Facebook friend, I discovered a wealth of information on something called “Conscious Conception.” I have a ton of research to do on Conscious Conception, it is a seed germinating in my mind and something I very much want to talk about. Just this morning I was staffing out work in the office and we got into a long conversation about how much I believe faith plays in people’s ability to deal with and overcome fertility.
And yet, all I am capable of on this gorgeous sunny day is to THINK about the overwhelming amount of things that are filling my proverbial plate. I am utterly and completely without the ability to deal with any of it today. For today my goal is to be able to breathe. One of the fundamental things in life which I must attend to if I am going to get back to these things, yes? Yet, instead of recognizing the very important need to take care of my own health, I have been beating myself up for my inability to do my work. I feel like I am drowning, literally and figuratively.
It was only upon stumbling across an issue of the Wellesley Alumnae Magazine and its cover article about “When Life Doesn’t Measure Up” and reading about how, when and why so many of my fellow Wellesley sisters feel like failures, that I realized that I feel like a failure for having pneumonia and not being able to do my work. And with that thought, I was off and running on a journey of self-analysis that of course brought me right back to the world of fertility and the feelings of failure that come with it.
Apparently, my college magazine conducted some kind of a poll asking graduates to discuss their feelings about their satisfaction with their life and feelings of inadequacy, failure, or success in a variety of different contexts. I don’t recall receiving a questionnaire in the mail or an email like this — must have missed out on contributing my own thoughts to this very profound poll. The reasons women gave for feeling like a failure were incredibly diverse. And yet, despite the very diverse reasons or situations my Wellesley sisters gave when describing their own issues with failure, including dealing with chronic illness, the article did not mention infertility or an inability to have children (or the choice not to have children) as raising issues of failure. Certainly, someone among the thousands of Wellesley graduates has experienced difficulties conceiving and must have felt like a failure. I did. I do. Why didn’t someone else talk about it? The Dixie Chicks talk about it in their song “So Hard” . . . a ballad that haunts me every time I hear it. It’s all about the feelings of failure and loss we have when we can’t conceive. One out of every 8 Americans is dealing with infertility. Why didn’t the Wellesley College Alumnae Magazine talk about it? Especially at an all women’s college, you would think that a topic like infertility and failure related to something so integral to being a woman would be recognized and not continue to be shrouded in secrecy. The article talked about the shame my sisters felt about their various failures, the secrecy that surrounded them but infertility was not among them. What gives?
The secrecy and shame surrounding infertility is pervasive. Just as for my sisters who are wrestling with their own failures of a different nature, the article pointed out that all of them felt better by talking openly in the article about failure and its impact on their self-perception.
Indeed, the magazine itself was often a cause for Wellesley alumnae to feel failure. By hearing about the success stories profiled in the magazine many women admitted that they felt that they had let down the school or that they failed to measure up to the “Wellesley standard” of being or becoming another Hillary Clinton. The article concluded with the following statement:
“But maybe what we don’t know is what failures happened to those women before they became household names that eventually brought them to the point of celebration. And until we hear those stories, too, we can’t begin to make new templates for success that acknowledge the inclusion of failure as part of a life well-lived.”
And this leads me to the following conclusions:
Until we hear stories about our feelings of failure and inadequacy arising from our infertility, and our subsequent success at overcoming them, we cannot begin to make those new templates for success that acknowledge how much stronger or sensitive we have become as a result of our infertility.
Until we hear stories about our feelings of failure and inadequacy arising from our infertility, we cannot begin to find faith that our own journey will end in success. We need to be inspired by the success of our sisters (and brothers) who have gone before us and achieved that which we long for — a baby — even if that success means embracing an alternate route to parenthood such as surrogacy, egg or embryo donation, or adoption.
It is, as my Wellesley sisters say, in embracing the loss in which we gain the faith to succeed. I wish there was no stigma to being infertile but I must confess that the lack of mention of infertility in this article really drove home for me the sense of the overwhelming stigma with which we live. I have a serious issue with the Wellesley Alumnae Magazine for not bringing to light a discussion of how failing at something as intrinsic as becoming a mother can be so devastating to our sense of self-esteem, to our marriages, and to our sense of failure as a woman. (I cannot fathom that not one woman responded to that poll and didn’t mention infertility and if that was the case, I am even more troubled by the statement that makes regarding how much we hide about our infertility).
Learning from others who share their own shame or other sense of failure about something with which we are all supposed to be able to do — conceive, carry and give birth to our children — is what will carry us through. For others it is not necessarily biological or medical failure but a sense of frustration at being unable to conceive because we lack the essential components — we are socially infertile. And learning from others who find ways beyond our social infertility will give us ideas and strength for achieving that which our sexual orientation precludes us from obtaining.
And as the wheels started turning and hit overdrive as I considered the article and my own sense of failure because I have pneumonia and am unable to work (and am thus letting down my clients to whom I truly want nothing more than to help have a child), and considered once again the stigma with which we live, I couldn’t stay silent. I pulled out my laptop and curled up in bed to “think through” this article and my situation and put together the pieces of this puzzle. My blog will now not only be devoted to discussing the concepts behind Conscious Conception, but it will be devoted to de-stigmatizing this disease. I know there is a Wellesley sister out there somewhere who is struggling to defeat the NOvary™ or endometriosis, to locate a birth mother, to navigate the increasingly complicated red tape of Ethiopian adoption, or to find a way to establish the fact that she and her partner are both the legal mothers of the child one of them delivered and which they intend to parent together.
So in my failure of having pneumonia, new ideas and inspiration have been born for my blog and thus my day has turned into one of celebration. And I ask you to please not be silent. I took the pledge with RESOLVE not to remain silent and today my failure in being human and having pneumonia has given me an idea of how I can fulfill my pledge to RESOLVE. My blog is a safe place where I hope to support people walking with me on this path, and to provide the occasional nugget of legal or medical information to move us another step forward on the path to parenthood. And thus I ask you to talk about your shame. Talk about your sense of failure. Talk about your frustration, your anger or confusion. (And if you are a Wellesley alumnae, help me convince them to let me write an article about infertility). Share your story here wherever you may be in your journey. And I will try and find people to share with you how they conquered the NOvary, endometriosis, found birth mothers, survived the red tape of Ethiopian adoptions, or proven their joint parentage.
Because I know that if we continue to be silent and give in to this crazy stigma, we will never know what failures happened to those women (and men) among us before they became mothers (and fathers), and that eventually brought them to the point of celebration. And until we hear those stories we can’t begin to make new templates for success that acknowledge the inclusion of infertility as part of a life with children.
And now for some random FAQ’s and reminders:
Yes, you can establish your parentage if you are a same-sex couple and one of you has a baby. Depending on where you live the mechanisms for doing this will vary. In some states you can file a legal action to have your parental rights established, in other states you may need or want to adopt (even if you are not married). In some States and in some circumstances you may need or want to do both.
If you have a functioning uterus, egg donation is perhaps the most successful route to pregnancy for women who have issues with the NOvary™. At many clinics, with a properly screened egg donor, live birth rates per egg donation are in the 60% range. Yes, you read that correctly, you could have a 60% chance of conceiving a baby using an egg donor. And among those that conceive using an egg donor, the rate of twin conceptions is in the 40% range (making a strong case for single embryo transfer).
If you are considering adoption but have financial concerns or are worried about wait times, relinquishment risks, or red tape, embryo donation is a rapidly growing path to parenthood. Using embryos donated from another family who has cryopreserved embryos which they no longer wish to use to build their own family, you may have a 40% chance of conceiving a child. In addition to the affordability of embryo donation and the high success rates, you have the opportunity to carry the child, control the uterine environment, and may have the ability to conceive more than one child (this will depend on the type of embryo donation you enter into, as well as the number and quality of the embryos donated to you).
If you don’t have a functioning uterus, gestational surrogacy is another option for becoming a parent. Using either your own gametes (genetic material), or an embryo created from egg or sperm donation (or sometimes both), another woman can carry a child for you and you will have all legal and parental rights upon that child’s birth. Surrogacy laws vary by State, and it’s far from inexpensive, but when done correctly, surrogacy is a wonderful means of building a family.
And let’s not forget what is now almost considered boring: IVF. If you have a viable uterus, eggs and/or sperm but for other reasons have difficulty conceiving on your own, with the assistance of In Vitro Fertilization, your chances of conceiving get better every day. With the improvement of the culture medium used to nourish embryos, together with advances in reproductive medicine, some families will have as high as a 70% chance of conceiving. Although the vast majority of families using IVF will need more than one attempt before conceiving, this is a technology that should not be ignored.
Other things to consider are:
PGD, (Preimplantation Genetic Diagnosis). This enables you to select only those embryos that appear chromosomally normal for embryo transfer in an IVF cycle. For older infertility patients, those with a family history of hereditary illness, or those with recurrent pregnancy loss, PGD can increase your chances of conceiving a healthy baby.
ICSI, (Intracytoplasmic sperm injection). This is where doctors inject the sperm into the egg to help facilitate fertilization. For families with male factor infertility this can help side-step problems with sperm that might prevent it from fertilizing an egg.
DNA Fragmentation Assay. This is a test performed on sperm to determine whether the sperm are chromosomally normal. Although there is a large range of “grey area” where it is unclear whether the sperm are going to cause problems with conception or pregnancy loss, this is proving to be a very important aspect in solving cases of recurrent pregnancy loss, IVF failure, or otherwise diagnosing “hidden” infertility issues.
Blood Clotting Disorders and other immune issues. Do you have unexplained pregnancy loss or IVF failure (with an egg donor)? Go get a work-up from a hematologist or other doctor specializing in diagnosing harder to find infertility issues. Sadly many physicians routinely overlook or discredit the influence or impact of blood clotting and/or immune issues on the ability of an embryo to implant in the uterus, or to the ongoing development of a baby.
Are you going to stay silent, or are you going to talk with me here about what you are feeling, what you are trying to do to overcome your infertility, or what you did that helped you overcome it? Speak. If not here, then find somewhere. Please.
Filed under: adoption, Age and Infertility, Deadly Silence, Egg Donation, Faith and Infertility, IVF, Peace to Parenthood, Personal Musings, Recurrent Pregnancy Loss, Sam Sex Parenting and Reproductive Law, The Journey to Parenthood, Thinking Out Loud, Third-Party Assisted Reproduction, Treatment, Uncategorized
