Archive for the ‘Deadly Silence’ Category
April 1, 2013 | By: Liz
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.
The painful silence of recurrent pregnancy loss and stillbirth. A first hand perspective and perhaps finally, a voice.
February 15, 2013 | By: Liz
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
September 18, 2012 | By: Liz
You know it’s not that often that I see glaringly offensive comments or information from professionals in the infertility world. Most of us know to be very careful with the language we use so that we don’t inadvertently hurt someone’s feelings. Today I was surfing Facebook and someone to whom I was connected (I am no longer “friends” with her) posted a comment about egg donation, adoption, and infertility. I thought at first she was referring to a blog and was hoping she was quoting someone else. Alas, I was very wrong and the link she posted was to an egg donation agency based outside of the United States (thank goodness for that — didn’t want to be running into her at any upcoming conferences lest I let her have it to her face) and the post was pretty much designed to bring attention to her agency. I am not a big believer in the old adage that any attention is good attention or that negative publicity is still publicity. In this industry, offending people is the kiss of death and well let’s just say I’ve been kissed.
I really don’t like the word “barren”. It’s an ancient reference to women who were unable to conceive and it dates back to a time period when women had no rights and would sometimes be replaced by another woman if she was unable to conceive a child. The Sixteenth Century this is not and I would have hoped that in the Twenty-First Century we would be a little bit more aware of appropriate terminology. I guess not because this FB poster (who shall remain nameless even upon kiss of death) seemed to think that all women who are having difficulty conceiving should be considered BARREN.
I don’t think so. Having difficulty conceiving does not mean we are barren. The word barren actually has many definitions (http://www.merriam-webster.com/dictionary/barren ) including “lacking inspiration” or “lacking charm”. For the record, I don’t consider any of my infertile clients, and certainly not my own bod, to be lacking in charm. Some of my clients are downright amazingly gorgeous women with incredible resumes and great personalities. In this case they are hardly barren are they? They also usually go on to become mothers which would seem to indicate that they are in fact capable of producing offspring (please note Miriam-Webster dictionary says nothing about those offspring needing to be biological children — at least its editors “get it”). But the word was used nonetheless in this FB post. The fact that the post tried to be “neutral” and present all sides of debates as they pertain to third-party assisted reproduction was totally lost on me by virtue of the selection of this word to describe me. Because that is who she is describing, me. The last time I checked I am still considered to be infertile.
The other problem was that this poster and her choice of words — and barren was by far the least offensive of them — revealed her own underlying belief that women who have difficulty conceiving, women like me who are infertile, are somehow lacking, less than other women, and are desperate. While she notes that “an element of respect” should be offered to these women, in and of itself that remark too is offensive. I am only entitled to “an element of respect”. 7 IVF Cycles, 9+ miscarriages (I stopped counting but there were more), three adoptions, and I am only entitled to “an element of respect”. Seriously?
Additional comments were made about whether decisions to use an egg donor were interfering with the “divine plan” for that woman’s life; and that what transpired to finally bring this barren woman to the point of actually considering using another’s genetic material could only be understood by the woman herself. Here I do agree with the post. However, I would prefer that she had not characterized the decision to choose egg donation as an act of finality, desperation, or somehow jumping off of the cliff of normalcy. Families are built in countless ways and all of them are normal.
Egg donors also were attacked for their decision to share themselves with other people. Let’s be clear that egg donation does not involve any kind of “sharing”. Egg donation agreements are clear that when a woman donates her eggs she relinquishes all rights to the resulting embryos and/or children. Egg donors do not share in the day-to-day life of the intended parents’ pregnancy, or their life as they raise their child. And let’s place the emphasis where it belongs, on “their” child, not the egg donor’s child. If this woman is counseling egg donors — and I fear she may be — then she is sending the wrong message to these selfless and generous women who donate their genetic material, their ova, to an infertile couple. They ain’t sharing those eggs or themselves with anyone.
Let’s not even discuss the offensive descriptions attributed to adoption. I will have a stroke.
I understand that this woman was trying to raise a debate, trying to draw attention to her business and what she does. But the choice of words she used as a professional in this industry was astonishingly rude and clearly revealed her own underlying biases. She is entitled to those biases. But as a professional she had a responsibility to keep them private and not mislead egg donors or intended parents. I also think it was a poor decision to use such inflammatory language if she was trying to promote her business. In all likelihood she sent potential clients running in the opposite direction.
I hope that the other people who read this post are wearing running shoes; they need to run as fast as possible. Most likely the very charming, inspirational women who read this post pulled their flats or sneaks out of their gym bag and took off their Jimmy Choo’s, and headed in the direction of a more sensitive egg donation/surrogacy agency, a therapist (I may need a session), shopping (in which case maybe they should leave on the Jimmy Choo’s), or a glass of wine and some Oreos.
For all those who read that post and felt in any way diminished as a human being because of their infertility, let’s get one thing straight: anyone who can get through this stuff is one tough, rockin’ mama. Emphasis on the word “mama” because that is what you will one day be called.
Filed under: adoption, Current Affairs, Deadly Silence, Egg Donation, Faith and Infertility, I'm Just Another Angry Infertile Woman, In the News, infertility in the media, IVF, Personal Musings, The Journey to Parenthood, Thinking Out Loud, Thoughts on Choosing an Egg Donor, Thoughts on Donor Egg Recruitment