Tag Archives: support

What to do with a blog

18 Monday Jun 2018

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I’ve been reading a few blog posts lately about what to do with an infertility blog after one becomes pregnant. People feel different ways about this, and I’ve given it my though too. And, for me, what it comes down to is this: infertility will always be a part of me. I’m one of the lucky ones who has become pregnant after IVF. My IVF baby is a big girl now at 3.5 years old. If I’m lucky, my current IVF pregnancy will also end up with a baby in my arms. But that is still in the works, and I haven’t even begun to feel secure with the idea yet.

Infertility is something near and dear to my heart. Gaining medical coverage for those who need infertility treatment is something I want to dedicate my time to. Advocating for reproductive rights and normalizing infertility by raising awareness is something I’m passionate about. I want to give back by supporting those struggling with infertility, just as I have received support from so many other infertility warriors. As  psychologist who devours research and has years of personal experience with infertility treatments, I think I still have much to contribute.

So I plan on continuing this blog. Some posts will be about pregnancy after infertility. As I began explaining in my last post, I believe that infertility has a significant impact on a woman’s experience of pregnancy that is distinctly different than what fertile women go through. This was something that I struggled with during my first IVF pregnancy, and from what I’ve seen in IVF support groups, it’s a pretty common experience. I want to give that experience a voice. In order to be mindful of those that might not be in a place where they want to read about pregnancy-related topics, I’m going to title each of those posts with, “Pregnant After Infertility…” for easy identification.

Otherwise, I’m going to continue blogging about infertility awareness, emotional coping, all the ups and downs, and the choices that we face while trying to conceive. I hope that some of my experiences and perspectives will continue to be informative and useful for those in the trenches. Oh, and I hope to throw in a dash of sarcasm and laughs, because we all need that.

The Liminal Space After A BFP

11 Monday Jun 2018

Posted by in Pregnancy After Infertility

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It’s only been 3 weeks since finding out that my FET actually worked, but it feels like a lot longer. Since my initial HCG beta, I’ve had 2 more betas and each had doubled appropriately. Each beta brought temporary relief and renewed confidence. All in all, I’ve been maintaining a decent level of calm, right up until about 3 days ago. Since then I’ve been beating back that feeling that, I think, goes had in hand with pregnancy after infertility. It’s the feeling you get when you know just how fragile something is. When you know how easily it can be lost. And how frequently “bad things” happen. How I wish I could be blissfully naive.

When I see women posting pictures of positive pregnancy tests, as they announce to the world that they are having a baby, I cringe in silence and hope that they really do end up with that baby. Or I roll my eyes and spat out, “idiot!” You know, it depends on how my hormone cocktail is affecting my mood that day. The reality is that those of us who struggle with infertility have a deeper level of understanding about what all can go wrong. And that makes the early weeks, even months, of pregnancy after infertility a peculiar time.

I feel like I have to pause to state specifically how grateful I am to be pregnant at all after my FET. So let me be clear – I am grateful. I would rather be riding in this anxiety boat than preparing the ships for another turbulent round of IVF, no contest. We all work so hard to hopefully get here. But I do want to acknowledge the strange liminal space that comes after a big fat positive (BFP).

The psychological impact of infertility does not go away with a positive pregnancy test. Sometimes, it doesn’t even go away when you get the baby in your arms. Trauma, depression, sadness, anxiety, fear, anger, guilt – these emotions can be carried forward. Sometimes their faces changes, but in some ways they may go with you. At least for a while. This concept caught me completely off guard when I became pregnant after IVF 4 years ago. In fact, it wasn’t even until the second trimester that I even realized how numb and detached I felt. That’s never how I imagined I’d feel after trying so hard for so long to get pregnant. And I was too ashamed about that to tell anyone.

The problem was that no one talked about it. So that’s why I’m bringing it up, because I know my experience isn’t unique. The infertility community is a wonderful support resource. But it can be hard to share anxieties and fears with those who are still struggling to get their BFP. And rightly so – I get that. Assumptions of happiness also come from family and friends, sometimes from our partners too. But I think it’s important for women to know that it is normal to not feel ecstatic after a positive beta. You don’t have to feel guilty for that – we’ve felt guilty about enough crap, haven’t we?

So what can we do when we are standing at the threshold of pregnancy land but we still feel like an infertile imposter?

First and foremost, I think just knowing that these feeling can happen and are normal is a huge step. I was literally blindsided, and when I realized what was going on I wondered why no one talked about this. As a psychologist I’ve worked a lot with trauma survivors, and I realized that there’s an analogy there. When you take a person out of a traumatic situation, we all know that there is going to be carryover effects. For example, when a soldier comes home from war, we know that simply being home and no longer being shot at doesn’t make all of the symptoms of post-traumatic stress disorder (PTSD) go away. Not by a long shot. I’m not saying that all women who go through infertility have PTSD, although some may. But, we can’t simply remove a woman from infertility and expect that she is going to be all smiles and have no remnants of the pain that she went through. Yet, a lot of people kind of expect her to.

When women talk about the unique experience of pregnancy after infertility – and not just the side with rainbows and kittens – we create awareness, normalize the whole continuum of the experience of infertility, and foster honest support. I’ve found some Facebook groups specifically geared toward pregnancy after IVF, but honestly they were harder to find than the infertility groups. I think these groups can be valuable since it provides a space for opening up about these feelings to women who can likely relate, without being insensitive to those who are still in the IVF trenches.

Lastly, I just want to say that we need to be kind to ourselves. That is true no matter where we are in this process, and it doesn’t end with a BFP. And this is particularly relevant to me today as I sit here anxiously awaiting my first ultrasound tomorrow. I’ve reluctantly analyzed every symptom in a futile effort to determine whether this pregnancy is still progressing – whether we’ll find a baby with a heart beat in there tomorrow. It doesn’t feel real. I don’t feel connected to this baby. I’m scared to, because what if… But I know that right now this is out of my hands. My body will do what it intuitively knows to do, and if this embryo is healthy then it will still be growing. If not, I will find a way to cope. I hope I don’t have to, but I will. If infertility has taught me anything, it’s how strong I am.

Do you trust your RE?

15 Tuesday May 2018

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When you become involved in the online infertility community, you learn a lot about what happens with other women during treatment cycles. You quickly find that different doctors subscribe to different beliefs, strategies, and practices. Not all doctors or clinics are created equally. And sometimes the differences seem to teeter on negligence.

Just recently, in fact, I heard from one woman that her RE is recommending that she cancel or convert her IVF cycle to an IUI because her lead follicle grew too much and is “overripe”. She has several other eggs that are prime size for retrieval, but her RE subscribes to the idea that the healthiest eggs (that is, the ones most likely to become a baby) are the ones that respond first to stimulation meds, so if you miss your lead follicle(s) you may blow your whole cycle. Compare this to RE’s who purposely “sacrifice” lead follicles to allow smaller ones to catch up in hope of gaining a bigger harvest. Their belief is that with more eggs retrieved, you have a better chance of getting the baby. Two very different approaches, with potentially very different outcomes. This woman is stressed and torn about whether to forfeit this cycle or proceed.

Another women is fuming because for the second cycle in a row, her RE wasn’t able to retrieve all of her eggs due to issues with the dose and timing of the trigger. So her mature eggs are stuck in her ovaries. The RE should have known better and made adjustments after the first cycle.

Then there are the tests that should have been done, but never were. Protocols that weren’t individualized for women, who were treated like numbers instead. The examples can go on and on.

Some of this discrepancy is no doubt due to limitations in the research. Some things just aren’t fully known yet when it comes to assisted reproduction (or reproduction in general for that matter – the birds and the bees was clearly too simplistic). But a big part of that discrepancy also falls on the shoulders of the RE. They simply are not all built the same. And the most disturbing part for me, as someone in the health profession, is that not all RE’s stay up on the current research or are even qualified to understand the research (it takes training in research methodology and statistics to really understand the studies that are published. Just because it’s published doesn’t mean that the research design and/or statistical analyses fully support the conclusions drawn in the study). So some RE’s unfortunately aren’t up on the current findings, and some really don’t understand the findings that they read. I don’t mean to pick on RE’s – it’s like this in any discipline that attempts to bridge the gap between research and practice.  And then there’s the RE’s personal experiences, which can influence how they practice.

I often joke that I should be awarded an honorary degree in reproductive medicine after everything I’ve been through and all the studying I’ve done. Seriously, I know more about reproduction than my OBGYN. But all joking aside, I’m not an RE. I rely on my RE to advise me, make the best decisions for my individual case, be knowledgeable about current research, and care about making this work for me. And I do. I trust and respect my RE. I actually think he’s awesome for so many reasons.

And that gives me a sense of peace. I know that if this doesn’t end in a baby, it’s not because my RE wasn’t skilled enough or should have done something differently. That isn’t to say that I wish we wouldn’t have done some things differently, but I do believe that we did the best we could at each step with the information we had. And when we got new information, we changed things up accordingly.

Going through IVF is easier when you trust and believe in your RE.

It really is. In life we often have to advocate for ourselves, and I want to encourage women to speak up during infertility treatment. Ask questions – as many as you need to until you feel satisfied with the answers. Don’t be shy. And if you don’t feel comfortable with your RE – if you don’t believe in their skill and trust them – consider finding a new one. I know that’s not always an option. You may be restricted by insurance, geography, or other factors. But if you have the option, exercise it. If you don’t have the option,  it makes this difficult process that much harder.

Beta Day

22 Thursday Mar 2018

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

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There’s never an easy way to do this. Yesterday was beta day. Simply the thought of waiting all day for the nurse to call with the results made my stomach turn. In the past, I’ve done it different ways – testing early at home, waiting for the call. But this time I decided to try a new method. I waited until after my beta – because I wouldn’t want to go get the blood draw if I already knew it was negative – and then used a home pregnancy test (hpt) after the beta rather than waiting for the call. Of course, I saved first morning urine for this to be sure I did it “right”. But the key to this method was having my friend come over to take the test with me. My husband was already at work, and although he is wonderfully supportive, I really wanted my girlfriend there. My poor husband is understandably emotional about this and I needed someone who could just be there for me.

So that’s how I did it. When the 3 minutes were up, I sat on my bed and my friend hurried into the bathroom to look at my test. I could see her from where I was sitting. I pictured this a million times – she was supposed to start screaming and jumping up and down. Instead she bent over to look closer. And I knew – it was negative. She turned with concern in her eyes and said, “I’m sorry”.

Afterwards, we hugged, cried, vented, got angry, and even laughed. As much as it hurt, it was the gentlest experience of bad news I’ve ever had. After hours of talking, we went out to lunch where we enjoyed strawberry martinis and cheesecake. Oh and there was actual food in there somewhere too, but who really cares about that when you have strawberry martinis and cheesecake?

At 3 o’clock in the afternoon, the nurse finally called to deliver my beta results. The first thing she said, in a nervous tone, was “are you sitting down?” And I rolled my eyes with irritation. I don’t know why – she is a nice nurse – but I can’t tell you how glad I am that I got the news on my own terms and didn’t wait for this call.

I’ve been instructed to start birth control pills again on the second day of my cycle, which will be tomorrow. I will meet with my RE on April 9th to discuss options. The nurse said, “we have many options – even a good donor embryo program.” I informed her that we are only interested in using my eggs, so when that option is exhausted we will be done. It’s such a personal decision – when to stop, whether to use donor eggs or embryos, etc. Somehow, having our daughter already has made us not interested in donors. Although I completely understand why others would take that option for their first and/or additional babies. It’s just not the right fit for us.

The wait to the 9th is going to be long, as all the waits are. I want to find out if my RE thinks it is worth it to try another IVF with a 3-day transfer – if there is still hope. But I do want to be realistic. I’m also concerned about the potential long term affects doing 7 rounds of IVF could have on my health. Is there an increased risk of cancer? I don’t know. The few studies I’ve come across have found either no increased risk or a teeny tiny increased risk. But I don’t know if the results would be different for multiple rounds of IVF. So I need to find out more about this. If the risks are low and there is still a reasonable chance for  success then I will do one more round. If not, then we will pull out our last ditch effort – transferring our pgs “abnormal” embryo that only has one partial deletion on one chromosome. The lab that did our PGS didn’t use next generation sequencing, so we have no way of knowing if this “abnormal” is really a mosaic – or the degree of mosaicism. Since many mosaic embryos do self-correct, that is an important distinction. And we just don’t know with this one. My RE said that based on the results for this embryo, it would either fail to implant, be an early miscarriage, or correct and be a healthy baby. He said it would not result in a child with a health problem or disability. So that will be our very last option. I won’t leave that embryo behind – wouldn’t it be crazy if, after all of this, that “abnormal” embryo was the one that made a baby! I do realize that is a very long shot though.

So that’s my plan for now, and we’ll make the final decision after my consultation. It’s hard to think about having no baby after all of this. I am ever grateful that my first IVF brought us a healthy daughter. I hold onto that. It will still be hard to let go of the dream of expanding our family.

I’m dreading starting birth control pills tomorrow. They make me irritable and negatively impact how I see my life. All these hormones lead to nasty mood swings. I discussed this fear with my friend yesterday and it was good to get it off my chest. It really impacts my ability to enjoy my time with my husband and daughter – and that scares me. I don’t want to waste any of the treasured time I have with my little miracle, and sometimes when these hormones rage, I feel like I’m not fully present or happy. That’s a major reason why I don’t want to keep doing cycles for too much longer. But my friend and I made a pact. I’m going to text or call her and say all the dark, angry things I might be feeling – and she is going to remind me that it’s just the hormones. It’s not how I really feel when I’m my real self. And I need to hear that to help me push past it – because it can feel so dark and real at times. Having a good friend to help you through this roller coaster is so precious.

To women going through infertility…

22 Thursday Feb 2018

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

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

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

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

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

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

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

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