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Post Traumatic Infertility Stress Disorder and National Infertility Awareness Week

April 2, 2013 | By:

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.

 

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The Burning Pain of Infertility

April 1, 2013 | By:

Infertility brings with it many kinds of pain.  The pain of an empty uterus could be used as the catch-all category for the pain we infertile folk feel, but really it can and should be broken down into more palatable and discussable categories. I don’t know about you, but I find that whole empty uterus thing to be a bit patronizing (although true).  So let’s explore the burning pains of infertility, those that are momentary and those that haunt us sometimes years after we ended treatment, those that come and go along with our menstrual cycle, and those that blindside us when we have failed to read The Infertility Survival Handbook and obtain a first hand account of whatever procedure you are undergoing.  I mean let’s face, I have been THERE, and I have done THAT.  All of THAT.  And I get the pain.  Even now.

There is the pain of daily injections (momentary) and from transvaginal ultrasound wands (slightly longer than momentary but nonetheless uncomfortable when one’s ovaries are the size of large oranges and someone is poking at them). There is the unbearable pain of a hysterosalpinogram when you have blocked fallopian tubes (or a sadistic doctor who tries to open your fallopian tubes without advance warning — and for what it’s worth the advance warning just would have made it worse).  And the devastating pain which follows a miscarriage.

There is pain, before, during and after fertility treatment and there is no getting around it.  There is no getting around the pain of a miscarriage, but the lessons we learn from it can make the pain more bearable.  (And for what its worth I think “the lessons we learn from it” also is a bit patronizing.  My apologies but I couldn’t find another way of describing what I want to talk about).

Even in the early days of trying to conceive — the pre-IVF days — there is pain.  The pain in the arse of taking your temperature every dang morning (thankfully the pain isn’t actually in your arse now that they have these wonderful digital thermometers which can help chart your basal body temperature).  And of course there is the pain of toilet paper.

What say you?  The pain of toilet paper?  Indeed my friend.  The pain from toilet paper burn, or TPB for short.  TPB is brought on by the obsessive compulsive mentality that we sometimes wander into when our period is due and we are trying to make a baby.  Any color on that toilet paper might be a telltale sign of our impending motherhood so you don’t want to miss it.  There might even be diagnostic value to the color which would help your doctor determine if there is something going on, or going wrong with your menstrual cycle.  So, for those of us who tend to wander into OCD territory (who me??), TPB can become a real hazard.  And as I recently discovered, it can become a hazard even when you aren’t trying to make a baby.

Now, the average woman going to the bathroom does not wipe obsessively, nor does she pay much attention to the process, technique or results involved in use of TP.  Such is not the case for a woman going through infertility treatment.  There is a significant amount of attention paid to the process, there are several different techniques for wiping (all of which are designed to reassure the crazed woman in the loo that she is not getting her period), and the results are quite obviously, critical.  Many a woman has called a friend or perhaps even a nurse to discuss the details of a particular swipe of TP and the medical analysis or conclusion that should be drawn therefrom.  Stop laughing or rolling your eyes.  This is serious.  When you have lost all control over your reproductive capabilities and you are going through emotionally and physically challenging medical procedures, the littlest sign that something has gone wrong (or perhaps gone right if it’s implantation spotting) has tremendous potential impact on your life.  In the absence of HPT’s, TP becomes a valid and useful substitute for self-monitoring during the post ovulatory or post embryo transfer phase of a cycle.

Why are we discussing TPB as one of the many representations of the pain of infertility? Well recently I had the displeasure of being reminded about it, but not under the circumstances you might think.  Rather, I experienced TPB out of fear that I was going into menopause.  Now let’s be clear.  I am not in menopause, nor am I perimenopausal (well I suppose Dr. C might argue otherwise simply by virtue of my advanced maternal age).  But as the window begins to close on my access to fertility treatments, and as I continue to wrestle with thoughts of going back for one last try, the thought of menopause is, well, frightening.  It’s one thing to have lost the ability to independently reproduce and/or carry to term due to infertility (i.e. without Dr. C).  It’s another thing to have my entire reproductive system close up shop and move to Miami.

Now the rational part of my brain understands that the last several months of my personal life have been subject to profound and extreme stress.  I have always prided myself on the fact that my menstrual cycle is regular to a fault.  The only time I have ever been late, I was pregnant.   But there is always a first time for everything, and so a couple of months ago I missed a month.  Then another month.  I didn’t need to take an HPT because I knew I hadn’t ovulated (let’s just say that after TTC for 7 years some habits die hard, especially if you are a fan of Toni Weschler).  My sane brain was telling me that the reason I hadn’t ovulated was from stress.  My OCD, however, kicked-in into high gear and I was rapidly becoming obsessed by the fear that my days being of “reproductive age” were dwindling. And the longer I went without a visit from Aunt Flow, the more the OCD took over.  How ironic. TPB brought on not by the fear that I wasn’t pregnant (and the hope that I was) but rather that I was in menopause.  Despite repeated attempts at convincing myself I was overreacting, I kept making trips to the loo and quite quickly (haven forgotten good TP technique) I had a significant case of TPB.

I finally decided I needed to decompress and meditate.  So I did. I meditated, I did yoga, I slept, and I paid more attention to eating things other than Snicker’s bars.  And I ovulated.  Or so I thought.  Going by the fertility bible written by Toni Weschler the signs were clear.  But I wasn’t 100% sure.  And so, 11 days after my suspected ovulation I was back rolling through TP, making extra trips to CVS to buy an emergency six pack of TP, and this time relearning my TP technique.  And yet I still felt the burn.  And finally, when I could stand the TPB no more, she arrived.  Precisely 14 days after the day that I thought I had ovulated (and let me extend my never ending thanks to Toni Weschler for teaching me so much about my ovulatory cycle).

I write this neither because this experience with TPB has led me to once again revisit the status of my own family building and a continued longing for another child, nor because I am working through my fears of the inevitability of menopause and that one day my reproductive years will come to a close (although technically the fact that the NOvary has put a “closed-gone fishin’ sign” on the front door does not mean I wouldn’t be able to get pregnant with some medical assistance), but because I was so struck by the way infertility and the quirky little habits and tricks we use to cope with it — TPB — endure.  TPB also is symbolic of the loss of control and fear that we live with when we are infertile.

In the end, I am grateful for that recent opportunity to experience TPB.  It is helping me work through those last remaining “what-if” thoughts which linger after you move on, after you stop treatment without a baby in your belly.  But it also reminded me of how many women are out there running the race to the loo and counting the days until they can take an HPT or get their blood drawn for their beta.  I am glad I had my little TPB encounter because it has once again helped me connect with my clients and understand what they are going through.

For everything unwanted (a negative pregnancy test), there is something wanted (a positive pregnancy test).  For every swipe of TP that remains spotless we need to remember to focus on the spotlessness in front of us and even glory in it, be excited by it, by the expectation of it; and not give in to the fear of the appearance of a spot on another swipe of TP and/or the end of a dream whether for that month or longer.  In the face of a spotted or soaked piece of TP we need to try and remind ourselves to stay focused on the day when we find out we will go months without worrying about TPB or better yet, no longer care.  My somewhat random fear of menopause has served to remind me that all of this, including menopause, is meaningless. Instead of looking at the burning pains of infertility as a negative, at TPB as a negative, I am instead looking for all the positives they reveal.  Without all those trips to the loo, I wouldn’t be here today, with the career I have, the family I have, and without the intense sense of inner peace that my recent bought of TPB has brought to my my life.  Yes the pain of infertility burns.  But through the ashes left behind after the burning subsides, there is birth, or in my case, a rebirth.

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The painful silence of recurrent pregnancy loss and stillbirth. A first hand perspective and perhaps finally, a voice.

February 15, 2013 | By:

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 

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