Archive for Sanity

Surviving infertility with your marriage intact

As I mentioned in my previous post, Mr. Nishkanu and I just had our 5th wedding anniversary, which coincides with the 5th anniversary of TTC. We are going to celebrate by spending next weekend at a fancy spa hotel complete with multiple massages, using a gift certificate that our in-laws gave us for Christmas and which we have been saving up for a special occasion (and I gotta say, that was a super ultra awesome gift). After getting kneaded to bits we are going to go meet the president of the country we are living in. Yep, I’m not kidding about that one, Mr. Nishkanu won a fancy prize for his work and one of the rewards is to get to shake the president’s hand. I hope that is the reward for the spouse of the winner, too, but in any case I will get to observe Mr. Nishkanu’s shaking moment in living color. All in all, an anniversary to remember.

In reflecting on the past 5 years, it is my humble opinion that a prolonged bout with the black demon of infertility will have one of two effects on a marriage: either the marriage will crumble, or the marriage will be welded into a much stronger partnership. We have been very, very, very fortunate that the latter is what happened to us. To be honest, I think it could have gone either way. Dealing with infertility, if bio kids is what you want, is dealing with a crushing disappointment which can cause a person to massively rethink their entire life path. It can also make you kind of desperate and willing to do things a wise person would not ordinarily do, and some of those unwise things can be very bad for a marriage. I think in our case, there were a couple of things that worked in our favor.

First, I married the right guy. Like any human being, Mr. Nishkanu is not perfect, but when it comes down to it, his heart is in the right place, he wants the best for me, and he would never hurt me for the sake of hurting me, no matter how mad he is at me. My mom is always going on about what a great guy Mr. Nishkanu is, which is sometimes a little annoying (because Mr. Nishkanu’s parents also go on at length about what a great guy Mr. Nishkanu is, and at some point I’d like to be the one who is so great!), but she is right, I picked a good guy and I can pat myself on the back about it even though honestly I was a little clueless about it at the time of the picking :).

Second, we both really want to have kids. Like anyone with half a brain after a few years of fruitless TTC and losses we began to think, hmm, I wonder if child-free living might be for us, since it sure sounds a lot more straightforward than what we’re doing now. And both of us could dismiss that thought in about 3 seconds. It makes it a lot easier to pull together if you both agree that pulling is the right thing to do. It doesn’t mean we always agree about the path to kids but we’re not arguing about whether we should even be on the path. We both agree about the goal and that the goal is worth all the hell to get there.

Third, we have both male and female factor. Mr. Nishkanu’s swimmers are plentiful but swim around aimlessly in circles and often have some extra heads and/or tails. My eggs are old ‘n’ stinky. On the one hand, this combination bites because if we only had one of these factors, we would probably have been knocked up well before now – if my eggs were young ‘n’ fresh IVF + ICSI would have done the trick and if Mr. Nishkanu’s swimmers were a bit prettier and goal-oriented he probably could have got some up to where they needed to be while my eggs were still relatively young and delightful. But the advantage of the double whammy diagnosis is – it’s nobody’s fault. There is nobody who has to think “gee, if it weren’t for their decision to be with me, my wonderful darling would have copious offspring by now.” Not that having only male or female factor makes it impossible to have a good infertility relationship, I’m just saying in this respect we have it relatively easy.

Nevertheless, even with all this going for us we still could have easily messed it up. I think the big turning point was a huge fight we had relatively early on in our infertility career, after maybe a year or a year and a half of trying. It was not the only disagreement we had about infertility, not even the only heated disagreement, but it was the only real fight that we had (where by ‘fight’ I mean ‘each person insists loudly on their own point of view rather than hearing the other person’). The fight was about under what conditions we would be willing to adopt a child. Mr. Nishkanu was only willing to consider a healthy infant, I thought that we should also be willing to think about older children and/or ones with physical handicaps. I felt strongly that Mr. Nishkanu was selfishly looking only to adopt a “perfect” child that would be as easy as possible and that we had a moral obligation to offer a home to a child that might otherwise have difficulty finding a family. Mr. Nishkanu said, with a sob in his voice which did not disguise its judgmental tone, that I was always taking on hugely difficult tasks and then getting totally overwhelmed trying to accomplish them, and he was scared of getting overwhelmed with me.

OK, he did not say this latter point in the most diplomatic tone possible, and neither did I particularly appreciate this critique of my personality (I got my revenge on him a few years later when he wanted to do yet more IVF cycles and I said “who is taking on difficult tasks now?” – and he had to utter the magical marital words “You Are Right.”). Nevertheless, something in the way he said it meant I finally heard him and how scared he was about the future. What I realized after that fight – and I think he did, too – was that whatever children we might one day have would be both of our children. And that meant that both of us had to be comfortable with the path they would take to us. One of us could not decide unilaterally that they would fulfill their dream in the way that they wanted to – we each had to compromise about what we wanted and find a way to fulfill our dream together, even if the other person’s idea of what was ‘right’ seemed weird or wrong.

This insight isn’t particularly infertility-related, since being able to compromise to make a way forward is an essential skill for a healthy marriage. It wasn’t necessarily a skill we were particularly good at when we got married, I am a very stubborn and headstrong individual and Mr. Nishkanu has a tendency sometimes to dismiss my point of view as “just emotional” and therefore not important. But what infertility did do for us was make it crystal-clear that we had to pull together and compromise, and it also gave us an awful lot of practice in compromising, as we had to figure out step after step what we would try next, who would take on what burden of the labor of cycling, and what we were and weren’t willing at any phase to try. At this point I feel we could tackle anything life throws at us, because we know how to do it fighting with our backs to the wall together instead of fighting each other. So, infertility: honestly? up yours! but still – in a tiny voice – thanks.

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Accepting my infertility

When I was in the first few years of TTC struggle, like many infertile folk I had a difficult time dealing with things like baby showers, pregnant women, and families with small children.  It hurt to see other people have the things that I wanted so badly but seemed impossible to achieve.  For example, a dear friend of mine has her refrigerator plastered with pictures of her friends and family.  In one corner are three birth announcements from the same family, each perfectly timed two years apart, and each with a line about how a child is a blessing.  Every time I saw them lined up there it would send an arrow through my heart, as I wondered why we couldn’t be similarly blessed.

At the time I didn’t really know when or how I would be able to move past that kind of pain.  Now, I do.  Because after a few years, that kind of thing didn’t bother me any more.  While we were waiting for our last embryo transfer, Mr. Nishkanu and I went to visit a local aquarium.  It was  packed with young families holding babies and kids running around, and the sight of all these young families didn’t bother me in the least.  My goal in this post is to share what got me from feeling the constant pain of infertility to recognizing that infertility is simply a part of my life, in the hopes that this might be useful to someone else who is stuck in the horrible pain part.

To some degree what I tell you here won’t really matter, since I think the most essential fact is that what you’re doing when you feel that pain is grieving, and there are no shortcuts in grief. The thing that makes infertility grieving particularly challenging for many of us is that infertility is often not very clear cut – you start by suspecting there might be a problem, then you know that there is a problem but that there are also solutions, and eventually – if you aren’t lucky – you start to realize that maybe for your problem there is no solution, or at least none that you can afford, whether monetarily or in units of emotional pain.   The grieving over your infertility takes place in small steps, in every cycle, but you rarely know how much you need to grieve, how much pain you need to take on and work through, because you never know – the next cycle could work, hope keeps springing back up again.   In a way the grief of infertility reminds me of the grief that people feel when they have a loved one who is missing – you don’t know whether you should mourn their passing or look forward to the joy of reunion.  You are stuck in a grief limbo.  The difficulty of such a limbo is clear from a recent study which showed that women who have to wait for a cancer biopsy result have as high a stress level as women who have gotten the news that they do, indeed have cancer.  And knowing the situation means you can start coping and doing something about it.  In infertility the situation is often not so clear.

Note: I have not been in the situation of learning in one fell swoop that you are definitely, 100% infertile.  I am not trying here to say “that would hurt less”, just trying to explain the special characteristics that make grieving infertility in an incremental way difficult.

Still, there were two things that I realized along my infertility journey that helped me to move to more of a sense of peace with my infertility.

One thing that helped me a lot with the pain that I felt when other people had what I wanted was to recognize that babies are not a zero-sum game, i.e. the fact that someone else has a baby did not cause me to be infertile or take away my baby.   I began to play a game with myself, where when I would see or experience something that made me jealous, I would ask myself, “If she was not pregnant / did not have that child, would that help my situation any?”  And obviously the answer was no, even I could see that.  If that couple walking down the street happily holding hands with their laughing child were instead walking down the street alone – or even walking down the street sadly, coping with the sadness of infertility – would that make me feel better?  No, it really wouldn’t, it would just mean there were more sad people.   Playing this game helped me to not take other people’s fortune as a stab to my heart.

But this was a relatively minor shift.  There was a much bigger shift that came in my thinking which took much of the sting of infertility away.  Even in the depth of my pain I could recognize that, as bad as my situation was, there were plenty of people who were in the same situation.  And as bad as the pain of infertility is, there are other situations in life that would be even worse.  There are awful things that happen to people every day – terrible diseases, accidents, violence, hate, war, loss of loved ones – compared to which my infertility was like a little dip in the road.  I slowly began to realize that what was driving the pain I felt about the unfairness of infertility was the belief that somehow I was special in that I should be spared suffering.  I thought that I had been unfairly picked out for suffering, but I realized that actually, until then, I had been unfairly picked out not to suffer.  As trite as it may sound, suffering is a part of human life.   Nearly everyone will have some kind of cross to bear – true, some more than others, but then again, me far less than some.   Those jealous eyes, looking at someone else who has something I want, don’t see what they are struggling with and suffering through, or what trials they will have to bear in the future.  Around us, everywhere, are people who have suffered through one trial or another, and I am simply one of them.  Infertility just happens to be the trial I am bearing right now.  It is nothing special.

Note: again, I recognize that I was lucky not to have had really terrible suffering until I hit the bump in the road that is infertility.  You may have suffered more than I have before getting to infertility, which would make it seem that much more unfair.   If that’s the case, I don’t pretend to know to how helpful this would be for you.

This realization has had both positive and negative ramifications for me.  On the negative side, it really makes me feel old.  I remember when I was a young girl, and someone would ask me what I wanted to be when I grew up,  I would say something like “a princess astronaut ballerina.”  I believed  anything was possible, I could achieve greatness, my dreams could all come true, life was exciting and full of possibilities.  Now, not so much any more.  Many wonderful things happen in life, but also many bad things, and there is nothing special that will save me from the bad stuff.

On the positive side, though, the insight that suffering is a natural human state has made me much more empathetic.  I understand better what it is to be someone in pain, suffering through something that makes you feel like you live in a different world from all those around you.  I met someone a few months ago who upon being introduced immediately told me that his adult son had unexpectedly died a few years before.  The naive, the-world-is-a-beautiful-place me would not have known what to say, and would have wondered at the strange intimacy.  This me, though, just said, “That’s terrible; it must have been such a shock.”  And listened as he told me about it, asked him questions about his experiences, and enjoyed a wonderful, warm, and very human conversation.

Don’t get me wrong.  Some people talk about the gifts that infertility has brought them.  While I respect that attitude and agree with it to a certain extent, I would happily give up these insights to have had the life that I wanted to live.   You don’t have to be happy you are infertile.  But it is possible, when you are ready, to get to a place of general peace with it.

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Infertility humour

When we were cycling in NYC, Mr. Nishkanu used to drag me and my sad, stimmed rear to comedy and improv shows to keep my spirits up.  Many a time I would sit folded into those uncomfortable seats with aching ovaries, laughing my pants off while going “ow, ow, ow!”  For a while I thought about developing an infertility humour stand-up comedy routine, though I thought probably most of the audience wouldn’t have a clue what I was talking about.  I don’t know about you, but humour is a major coping mechanism for me.  It has gotten me through many dark nights of the soul during infertility treatment.

Mr. Nishkanu is very good at getting me to turn a cry into a laugh.   When after stims I was swelled up like a giant weather balloon, and I would start saying in pitying tones “look how gigantically unnaturally swollen my belly is”  he would say “I know, if I saw you lying on the beach, I would push you back into the water.”  A lot of marine mammal jokes were told by all after that, to everyone’s amusement.  Or complaining piteously about medicine side effects, “How can I be hungry, have heartburn, and be nauseous all at the same time?”  Mr. Nishkanu just responded with a giant belly laugh… and suddenly I could see the funny side of it too.  (Note: after nearly 15 years of acquaintanceship Mr. Nishkanu has a very finely honed sense of when a giant belly laugh is safe and when it is likely to lead to hormone-induced rage.)

During our most recent 2ww:

Nishkanu, reading blogs: You know, Mr. Nishkanu, there are people who do an IVF cycle and then they actually get pregnant, and not only that, they go on to have an actual baby.

Mr. Nishkanu: That’s not true. It’s all just a giant hoax.

N: You mean like a Ponzi scheme? The early people get the babies of the late people?

Mr: No, no one gets any babies. The RE’s all just pretend that it works to get the money out of suckers like us.

N: They sure went to a lot of effort. It must take a lot of work to make up all those blogs of people who are going through IVF and get pregnant.

Mr: There are a lot of unemployed English majors.

Do you have any infertility jokes to share?  I’d love to hear them.

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So, you did IVF and it worked. What now? (preg ment)

This post is an expanded version of a previous blog post on The Stirrup Queen Ballroom.

I can’t say I am really an expert on this topic, since until now I have never managed to make it past the 7th week.  But I do have a few small suggestions.

1. Some of the scarey things that could happen to you don’t actually mean a thing with regards to the health of your pregnancy.

The first and most important suggestion, which you really must follow, especially if you are spotting or your symptoms are going away and you are afraid you are miscarrying, is to race right over to  A Beautiful Day and read her classic and extremely informative post: When IVF Works: What the RE Doesn’t Tell You.  Go ahead, go do it, this post can wait.

Now wasn’t that exceptionally informative and reassuring?

2. You might not feel 100% happy, and that’s OK.

So, now that you’re back, let’s sit down and have a heart-to-heart about how you are feeling.  Giddy?  Excited?  Elated?  If so, good for you!!

But if you have a lengthy infertility battle behind you, and especially if that battle involves prior losses, here are some words that might also describe you: terrified, numb, freaked out, anxious, sad, angry… unfortunately, these emotions, too, are par for the course for the post-infertility pregnancy.

In my recent 2ww, I had accepted my infertility and was OK with whatever would happen.  As I said to my friends after the transfer, “60% chance I start building my family with DE, 40% chance I start building my family through adoption.”  When I POAS’d the day before the beta, while I was waiting for the test I sat with my eyes shut, imagining a blank result and chanting mentally “We are going to adopt!” But within 30 seconds my husband said “There’s a second line!”

My first reaction: incredulity.  My second: shock.  My third: numbness.  I sat with that numbness for a day or so, poked at it a bit to try to find out what was going on, and unearthed a deep, smoking pit of terror.

I was OK with a BFN.  I was OK with moving on to adoption.  I am not OK with losing a baby once it has shown signs of preferring to stick around.  The stakes are now much, much higher.

And so I wake up at 3 AM and stare at the ceiling and wonder whether there will be a heartbeat at the 7w ultrasound.  Whether we are enjoying the first short weeks of a very long acquaintance.  Or whether we are already getting ready to say good-bye to the little life that we created.  Dr. Google says insomnia is a common early pregnancy symptom, according to What You’re Not Expecting When You’re Trying to Expect.  Maybe Mr. Nishkanu is pregnant too because most nights when I am awake, he is lying awake right next to me.  He is normally a pretty resilient, unworrying kind of guy but now he is looking drawn and tired.

And after 2 or more years of finally being OK being around pregnant women and young families, I find myself again reverting to that earlier heated jealousy of pregnant women.  Yes, I am ashamed to admit it, but I am jealous of pregnant women who are farther along than me, who can be more sure than I am that their baby will live.  Today I saw a woman in her 4th or 5th month, wearing a tight shirt that showed off her mini-bump, looking happy and energetic, and I thought to myself, “She has probably never had a miscarriage. She probably thinks everything will be fine.  And everything probably will be fine… for her.”  Yeah, ok, I know it is time to get a grip.

But my point is,  if you are feeling negative emotions instead of the sense of elation you expected to feel, this is totally normal for post-loss (including post-infertility) pregnancy.  If there’s one thing a person learns from infertility, it is that the dice don’t always roll in your favor, and there are no guarantees now, either.   To be honest, I think to some degree the post-infertility pregnancy attitude is simply more realistic than the naive innocent person’s.  Yes, it could go wrong.  And it could break your heart.  Life is like that.

3. There are things you can do that can help to make you feel a bit less anxious, if that is a problem for you.

Nevertheless, after some initial hyperventilating panic, I started to find some things that made differences for me – small differences, but important ones.

I found this article on dealing with fear in post-loss pregnancy incredibly helpful, especially this piece:

“When a fear is a remnant of past experience, it isn’t necessarily a predictor of future events. Your worries are not foolproof evidence that something terrible is actually going to happen. How can you tell? Try to separate out which fears are arising from your imagination and memories of what happened before, and which fears are arising from cues you are actually observing or tuned into. If a fear is coming out of imagination or memory, discount it. It’s not real.”

When I read this, it really helped me to make a mental separation between the fear and trauma from past pregnancies and the current one.  This pregnancy isn’t necessarily doomed, just because the last ones were.

I also remembered that one characteristic of anxiety is that it is often based on desperate attempts to run away from the frightening emotions that are driving the anxiety. Sometimes it helps to stop running, face your fears and clarify them, and find out what you’re really afraid of, rather than leaving them as a big, foreboding, unclear mass.

When I actually sat still and let myself really feel the bad feelings that were welling up instead of covering them up with numbness and racing thoughts, I realized that part of the issue was that I am still really traumatized by the awful D&C that I had after my last miscarriage. It was a collision course of incompetent and uncompassionate care – even Mr. Nishkanu is still traumatized from watching me cry while a bumbling nurse tried over and over again to place an IV in my hand, until I started passing out from the pain (at which point she started complaining about me being a bad patient). I promised myself that if I have a miscarriage this time, I will find compassionate, competent caregivers, and if any of my health care providers start causing me unnecessary pain or treating me rudely I will insist on getting treatment from someone else. Once I had done that, I felt a lot better.

As Katie suggested to me, some women find it helpful to repeat positive  affirmations to themselves, such as “No matter what happens, I am pregnant today,”  “My baby has a good chance to live,” or “My body is taking care of my baby’s needs.”  They work best if they are things that you can really believe – if you are scared of a miscarriage “I won’t have a miscarriage” probably won’t do much for you, but “I will find peace, whatever happens” might.  You should note when constructing an affirmation for yourself that your subconscious doesn’t understand “not”, so something like “I will not let fear destroy my pregnancy” might get turned subconsciously into “I will let fear destroy my pregnancy.”  It’s therefore best to formulate your affirmations as positive statements, eg. “It’s safe to enjoy my pregnancy.”

A lot of women who have worries about their pregnancy get comfort from living one day at a time, reminding themselves that no matter what happens, they are pregnant today.   It can also help to break the pregnancy up into smaller goals – make it to the second beta, make it to the 7w ultrasound, make it to the end of the first trimester… and celebrate every small victory you make it through.  From my experience with miscarriage I can say that I never regretted the time I was happy and I thought the pregnancy would work.  If anything, I wished that time had lasted longer.  So I don’t think you need to feel that if you are enjoying your pregnancy now that you will regret it later if something goes wrong.

I find The Anxiety + Phobia Workbook a good source of longer-term coping strategies. I am working on the strategies suggested there for consciously blocking obsessive worrying but I’m not particularly good at that yet…

Being kind of a research geek, I also found it comforting to read about Denise Cote-Arsenault’s research on how women who feel when they are pregnant after loss in an attempt to educate health-care providers about how they should treat these women. Her article “One Foot In, One Foot Out” explains the coping mechanisms that women use to deal with post-loss pregnancy. My favorite part of the article was this:

“Although the metaphor, One Foot In – One Foot Out [i.e., that women do not fully commit to the pregnancy], seemed ubiquitously applicable, each woman’s response and situation were quite unique. These differences were easily shared and accepted by the other participants, sending the message that getting through the pregnancy was so difficult that no one would pass judgement on how it was managed. How to ‘do’ pregnancy was certainly individual and each woman, not others, knew what was best for herself.”

And that really matters here.  In the end, each of us has to find her own way through – there is no one “right” way for anyone to approach pregnancy.

You might find some comfort out of some of the other measures I mention in my post on Anxiety and Infertility.

If anyone has additional suggestions I would love to hear them – please add in the comments (lord knows I can use some more suggestions myself).

4. You don’t have to read the dreaded pregnancy books to find out what you should be doing, just this next section.

I don’t know about you, but I can’t stand to read regular pregnancy books because they are all so dang happy and positive.  In fact, they seem to presume that you actually will have a baby at the end.  What a crock!   I therefore asked a less infertile friend of mine to report back what you are / aren’t supposed to be doing while you are pregnant.  Let this tide you over until you can stand to look in those books.

  1. Don’t eat: raw or undercooked: fish, meat, eggs (including homemade mayo or soft-boiled eggs), cold meat (including luncheon meat) unless you heat to steaming before popping it in your mouth, raw milk products, moldy cheese (e.g. brie, blue cheese), artificial sweeteners, alcohol.
  2. Take your prenatal vitamins with 800 mcg folic acid.  Also take a calcium supplement, or your teeth and bones will start to suffer while your baby is making his/her teeth and bones.  Most prenatals do not provide enough calcium by themselves.
  3. Do not get overheated (whirlpools, saunas, exercising in hot weather, etc.).
  4. Avoid all your favorite illegal drugs.  Check with your doctor before taking over-the-counter medications. If you are smoking, try to stop.
  5. It’s probably a good idea to take fish oil capsules, but check that they have been tested for mercury first.  In general, fish would be good for your baby’s developing brains if it were not full of toxins; you need to be careful what you eat and it is a bit complicated.  The guidelines for which fish are OK to eat are here.
  6. Reduce caffeine consumption to the equivalent of 1 cup of coffee per day.  And I don’t mean one of those Starbucks Grande cups either.  Be very careful with herbal teas, because many ordinary herbal teas such as chamomile or lemongrass are bad news to drink while you are pregnant.
  7. A healthy diet with lots of fruits and vegetables, low-fat protein sources, and unrefined carbs is always a good idea.
  8. If you are feeling nauseous, frequent small meals are a good idea.  If you are feeling really really nauseous then just focus on getting in enough calories and don’t worry about general nutrition.  “Enough” calories is generally about 300 more calories than you would usually eat.  But it’s not unusual, if you have severe morning sickness, not to gain weight or even to lose some in the first trimester.  Your baby won’t starve, it gets first dibs on the nutrients.  But definitely talk to your doctor if you have any concerns or if you’re having trouble keeping food down.
  9. It is generally OK to exercise when you are pregnant, in fact it is a good idea.  Check with your doctor about the limitations they would have for you.  Chicklet has a great post on what generally is/isn’t a good idea when it comes to exercising during pregnancy.

5. It is OK to complain.

If you have been infertile for any period of time you have probably gone through a period of severe annoyance at women who complain about their pregnancies, and thought to yourself “I would gladly trade my infertile state for your nausea, lady” or even “God, if you let me get pregnant, I will not complain about anything.”  Now a miracle has happened, you have your nausea, and you know what?  It kind of s*cks.   Granted, it doesn’t s*ck anywhere near as much as not getting pregnant does, but that doesn’ t make it a walk in the park either.  It is extremely common for infertile women to feel that they should not complain about their pregnancy, that they have to be happy about all the weird things that happen to their bodies and all the discomforts and anxieties that come with it.  This is not my attitude.  Yes, you should probably not expect much sympathy from people who are suffering from infertility, and it would probably be kind to take your complaints elsewhere.  But I don’t see any reason why, just because you got the short stick and had to walk a trail through hell to get to pregnancy, you now also have to draw the short stick and don’t even get to complain.  Complain away, just be sensitive about who you complain to.

p.s. If you don’t believe me, then please ask A Beautiful Day.

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Anxiety and Infertility

It is extremely common for people struggling with infertility to be dealing with high levels of anxiety.   In this post, I look at the relationship between anxiety and infertility from my own personal experience and suggest some coping strategies that I found helpful.  Some of this is about clinical levels of anxiety, but the suggestions included below are intended to be helpful for anyone dealing with anxiety arising from infertility.  You can skip the background and leap straight to the strategies for coping if you want. Please note I am not a doctor, I am just relating my own experiences.

1. What is anxiety?

We all know that women have the tendency to go a bit crazy during IVF cycles.  No surprise – you’ve got insane doses of hormones racing through your system, and you’re generally stressed and worried about whether the cycle will work.   Usually for me, the cycle would be a rollercoaster of hope and fear and terror and hormonal craziness, to be replaced by crushing depression afterwards.  But on my 5th cycle – the last with my own eggs – the overwhelming feelings of fear and terror and craziness never left, even after the drugs were all out of my system.  Uh-oh.

It wasn’t because I was sad it was my last cycle (with my own eggs) – I never wanted to do stims again, I think if my RE had said to me “Great news!  We have a new treatment for you that will have a 100% success rate!” I would still have turned it down, I was that worn out from the whole process.   I had accepted that things were the way they were, and was ready to move on to something new, but I was so continually agitated I wasn’t in any state to move on to anything or even to go to work (fortunately this happened conveniently close to the Christmas holidays).   I started to develop all kinds of nervous tics, which freaked me out even more.  I went to see the doctor, who told me that I was suffering from anxiety and sent me on to a therapist.

Of course, before my appointment with the therapist  I went to Dr. Google to find out what this anxiety business was all about.   Anxiety is often defined as “excessive worry.”  That didn’t sound right to me at all.  I wasn’t “worried” that I was infertile, that my IVF wouldn’t work, or that I would not be able to bear a biological child: these things were simply facts (and anyway, being ‘worried’ about not being able to achieve one of my life’s major goals didn’t seem ‘excessive’).   In any case, I didn’t feel like I was sitting around worrying about anything, I just felt agitated, keyed up, scattered, restless, jumpy, and completely unable to deal with everyday life.  But I didn’t feel anxious about anything.

Nevertheless, the therapist confirmed that, indeed, these things I were feeling were anxiety.   I think a better way to understand anxiety, at least in my case, is as an extreme version of the fight-or-flight response.  If you are continually in situations that frighten you, with no possibility for escape, then eventually you are going to get into adrenalin overload, and that is what anxiety is – worry is more of a symptom than a cause.   The cause is adrenaline overload and a nervous system that has become a hairtrigger for stress, which in turn causes agitation, racing thoughts, and worrying.

2. What is the relationship between anxiety and infertility?

My extensive, yet totally undocumented internet research has revealed a strong link between anxiety and infertility.  Here I’m not talking about the “just relax, you’ll get pregnant” crowd but rather about the fact that after seeking infertility treatment, and especially after a length of time of unsuccessful trying, there is a high rate of clinical anxiety among infertile couples.   If you think about what causes anxiety – being caught in situations that frighten you, with no escape – the reasons are pretty straightforward.  For people who want to conceive, infertility is a huge life crisis, a stressor that can easily trigger anxiety in those disposed to it.   And when you have been cycling for a while, the prospect of life without children becomes a huge, looming danger, and each failed cycle is a desperate, but eventually unfruitful, attempt to avoid that danger.  I began to feel after a while like Sisyphus, pushing a giant rock up a hill with each cycle, then watch it tumble back down again and my task start over.  I told my friends I was on the “Hamster Wheel of Doom”, running, running, running, but never getting anywhere.  It’s easy to see how your system can get overloaded and oversensitive when facing such a seemingly never-ending life crisis.

I suspect, though, that there is another link between anxiety and infertility.  People who are prone to anxiety tend to have certain personality traits in common.  On the negative side, people prone to anxiety tend to be more perfectionist; we tend to seek approval, need to be in control, and drive ourselves regardless of personal cost, ignoring signs of stress.  On the positive side, we tend also to be more creative, intuitive, sensitive, and empathic.  These personality attributes may contribute to more suffering with infertility.  Please note I’m not saying that somehow a predisposition to anxiety causes you to become infertile.  Rather, these personality traits may lead people to (a) feel the losses involved in infertility more acutely (b) to feel a strong compulsion to have children in the way we wanted and imagined or think “ought to be”, rather than in whatever way is possible (c) have difficulty handling the reality that something so important to us is not in our control, despite a strong need to be in control and a long track record of doing so and (d) continue with cycle after cycle despite it causing way too much wear and tear on our psyches and bodies (yes, I know, I am the poster child for this one).  I have friends who TTC’d for 2 months and then said “screw this, we’re adopting,” and others who adopted without any interest in trying on their own.   Although they may be infertile (quite likely, because of their age), these two couples never suffered from infertility.  And you can believe I was jealous of them; although on the surface it looked like joining them would be easy, what I was really jealous of was that they never had to grieve (at least, not about that).

3. What can help with dealing with anxiety during or after infertility?

Here’s some things I found helpful.

Something that really helped me a lot  was The Anxiety and Phobia Workbook, by Edmund Bourne.  This is a giant bible of techniques and ideas which help to mitigate anxiety.  It is really practically oriented, it’s full of concrete activities to try that help both moment-by-moment and in the long run.  I can’t recommend this enough.

One of the most helpful techniques for dealing with anxiety is cognitive-behavioral therapy – i.e. where you identify what you are telling yourself when you are upset, and practice telling yourself things that make you feel better.  You can work on this with a counselor, using the Anxiety and Phobia Workbook mentioned previously, or using the book Feeling Good: The New Mood Therapy.   The basic idea is that when you are feeling bad, stop and write down immediately the thoughts that are coming to mind (e.g. “I will never have kids” – “God must think I would not be a good mother” – “Everyone else can conceive easily.”)  Trust me, if you do this religiously for a few days you will be astonished to see the volume of negativity you are spewing at yourself.   When you have calmed down, write down more supportive and helpful statements that counter what you were saying to yourself previously (e.g. “I will have kids someday, somehow, someway” or “I will make myself a good life, no matter what happens” – “God will help me through this trial” – “Plenty of people have trouble conceiving, and they find a way to survive it”).  Note: the positive things have to be things you can really believe, “I will magically 100% for sure get pregnant on my next cycle” would be nice but you’ll probably find it hard to really believe it.   Practice saying those positive things instead when you notice yourself getting upset and notice how much better you feel.  Pretty soon the more supportive thoughts will become second nature, a way that you can take care of yourself.

It is really important when dealing with a serious emotional crisis not to feel bad about feeling bad.   Many of us carry along a lot of baggage about how we “ought” to be feeling – I “should” be able to handle this, I “should not” be so upset, I “should” behave rationally, etc.  All these shoulds just make us feel worse.  Dealing with infertility is a genuine crisis.  You don’t have to feel bad about not being able to handle it without any emotional upset.  At one point when I was dealing with infertility anxiety, I told my mom about how bad I felt, I was getting hardly any work done, etc., and my mom started saying “that is so terrible, you have to be working now, it is really important for you to be productive,” etc.  I gritted my teeth and said “Mom, that doesn’t help.”  And yet how many times have I said the same kinds of things to myself?  Recognize that you are in a major life crisis and your body is telling you that you need to take the time to deal with it.  And don’t apologize about having that need.

Since anxiety is based on a fight-or-flight reaction, what’s really going on is often that your racing thoughts, behaviors, and actions are attempts to run away from something which is too frightening to confront directly.  Sometimes it helps to sit down and take some time to consciously face the thing you fear.   Be brave and spend some time really experiencing the feelings of sadness, anger, or grief that are welling up in you.  It won’t be fun but… if you give yourself a chance to really feel them it will make it a lot easier for you to move on.   When I’ve done this successfully, I felt an intense sense of catharsis and an immediate improvement in my anxiety symptoms.

Something my counselor always emphasized – and he was right – is the importance of regular exercise.  If you’re feeling anxious you’re running around with a lot of extra adrenalin in your system, and exercise helps to burn some of that off.  If the exercise requires a lot of concentration (e.g. following an instructor in an exercise class, paying attention in sports, or intense exercise like weight training that you can’t do unless you are fully concentrated), it really helps you to get your mind off the stuff you are anxious about for a while.   And, let’s face it, infertility treatments are not kind to your body nor to your waistline, and it can feel really empowering to work on getting fit again – just ask Chicklet.  Note: if you would like to exercise and are near, in, or just after an IVF cycle please read my post on the safety of exercise during IVF first.

In any case, a lot of anxiety is “being in your head” – being preoccupied with the bad stuff that is happening to you, racing thoughts, an inability to mentally slow down.   It can really help to engage in activities that get you out of your head and back into your body again.  That includes exercise, but it can also include other kinds of physical activities, from going to the sauna to dancing to some music you love.  This might sound kind of weird, but during one of my anxiety episodes I got a lot of comfort out of going down to the local stable and scooping poop after the horses.  Whenever I got in a bad way, Mr. Nishkanu would say, “Why don’t you go down to the stable again?”  I’d always come back feeling a lot better.

When you are anxious you are carrying around a lot of muscle tension in your body, and that tension can keep you feeling anxious.  You can short-circuit some of that using progressive muscle relaxation (PMR), a technique whereby you alternately tense and relax different body parts.  There are lots of free mp3’s on line that guide you through PMR (see for example Dr. Todd Finnerty’s site), you can download some and see what works best for you.  PMR works best to lesten your overall anxiety if you do it regularly, 1 or 2 times a day.

If you are having trouble calming down because of racing thoughts, this site has an excellent description of the “Stop Sign” method of consciously blocking your racing thoughts.    Another excellent practice to get into which will help with racing thoughts is meditation.  I am terrible at this but that is why I need it so badly.  In principle meditation is pretty simple, you can just close your eyes and notice your breath going in and out.  And when I do that?  In 10 seconds I am off on the monkey-mind thought train, wallowing in my worries again.  15 minutes later I remember “oh wait, I wanted to meditate.”  What I found really helpful was the guided meditation recordings available (free) on The Meditation Podcast. Just plop one into your mp3 player, plug in your headphones, and off you go.  The ‘guided’ aspect helped to keep my mind from wandering.  The podcasts are part of a whole series that teach you to meditate.

If you are in or just coming off of treatment and/or a miscarriage, remember that your body is grappling not only with a lot of stress but also with a very strong flood of hormones. These hormones amplify any emotional reactions that you are already having to your bad situation.  It helped me when grieving a miscarriage, for example, to remember that once the HCG washed out of my system and the progesterone wore off, I would automatically start feeling a bit better.

If things are getting out of hand…

I found counseling incredibly helpful.  In my early days of counseling I went a couple of times to a counselor who specialized in infertility.  She was not very helpful, I got a lot of stories about other people who had trouble conceiving but got knocked up quickly and the classic  “you have to relax or you won’t get pregnant”.  Later I found a counselor who knew little about infertility or infertility treatments but was smart, sensitive, and experienced in dealing with anxiety.  He was happy to be educated about the treatments and their implications and ‘got’ the emotional issues instantly (unlike the fertility-experienced counselor, who seemed to get the lingo but not the emotions) and gave really practical, useful suggestions for how to feel better.

In my worst days I was very happy that my doctor had given me some medication for anxiety.   The stuff pretty much knocked me out and it was not the kind of stuff you want to be on all the time but when it got out of control and I couldn’t take it any more it was nice that I could get a brief break from it for a while.  Just knowing I had it and if I got into an emergency I could use it was already a huge comfort.

I am very sad to say this, but if you are hoping to adopt from China in the near future, before you seek a doctor or therapist you should be aware that under the current rules, you will be ineligible for adoption with a ” Current diagnosis of depression or anxiety or currently on medication for depression or anxiety. If you were previously diagnosed with depression or anxiety, you must be off medication and recovered for at least 2 years.”   In my humble opinion, you should not allow this to hold you back from treatment though if you need it.

Did I get something wrong?  Do you find other coping strategies useful?  Please add in the comments below.

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What to think about when you’re thinking about peeing on a stick

So, you had your IVF cycle, and now you’re in the hell that is the 2ww.  And (a) you are sure you are pregnant and/or (b) you can’t stand the not knowing, so you’re thinking about doing a home pregnancy test.

I have for you a cautionary tale.

Now don’t get me wrong, I am not philosophically opposed to POAS (peeing on a stick).  My personal belief is that one should always POAS before the beta, because do you really want to have a heart attack every time the phone rings on beta day, bust out into tears while talking to the nurse, and then have a hysterical crying jag right before some important meeting because the nurse chose that time to call?  I don’t think so.  No, you want to have privacy and plenty of time after finding out the result to either celebrate with your sweetie or to lean on each other’s shoulders as you plumb the depths of some serious depression.  But in my opinion the POAS should happen as close to the beta as is possible while still leaving the necessary private dealing-with-the-news time.

Let me tell you how I came to this conclusion.

On my very first IVF cycle, I had realized the necessity of the therapeutic pre-beta POAS, and the time I selected for it was the Sunday before my Tuesday beta.  That was late enough that I could be confident of the FRED results, but left plenty of time, if necessary, to mourn with the sweetie before the workday began on Monday.  I POAS’d, and it was negative.  And mourn we did.  For several hours.  Then we somehow scraped ourselves together and made it through the rest of the day.

Tuesday morning for some reason I decided to POAS again – I guess under the theory of you never know.  And for sure you never know, because this time – this time it was positive.  And I had never, ever in my life seen those two pink lines.  Time for a celebration!  Woo-hoo!  All the crying and moping around had been for nothing – what a waste of time and emotional energy!

Then on Tuesday afternoon I got the call from my clinic.  My beta was 48; the clinic’s cut-off for a viable pregnancy was 50.  It was the start of low beta/low doubling hell, which dragged on for weeks – long enough that an RE at the clinic suggested that he give me a shot of methotrexate to “help the process along”.  Fortunately, I had recently discovered A Little Pregnant, so I knew what “help the process along” was a circumlocution for, and how completely not safe it would be to have a methotrexate-induced abortion while my husband was out of town and there was no one to take me to the ER if necessary.  I miscarried naturally the next week.

If there is something I learned from this series of events, it is that peeing early doesn’t give you any certainty. You can have a negative even though you are pregnant.  Worse, you can get a positive and actually be pregnant but it is irrelevant if the pregnancy does not stick around until beta day, or only shortly thereafter.  And at this point in my reproductive history crap pregnancies that yield positive sticks are a dime a dozen.

Note: after this experience Mr. Nishkanu also begs me in heart-rending terms not to POAS early, when I am tempted in a moment of weakness.

Sadly, I have actually come to the point now where, as awful as it is, the 2ww beats what inevitably seems to come after it – the horrible pain of mourning and the slow hormone-addled depression and anxiety which comes after almost every IVF cycle.  At least in the 2ww you have some hope, even if it has been horrifically beaten down by fear.  I have come to the point where I don’t want to POAS, and I don’t want my beta either – I’d rather just wait and see if my belly ever gets bigger and put off the seemingly inevitable pain.  That’s not practical, so I stick with the POAS at the last possible minute.

Now my story doesn’t have to be your story.  Obviously there are a lot of people who have better outcomes.  But also there are a lot of people who use POASing in different ways to manage the stress of cycles, and who find that peeing early is better for them to deal with the anxiety of the 2ww.  So figure out if this assvice fits you before trying it on.

p.s. Just after I finished drafting this, Mr. Nishkanu said to me, “I think we have been using the wrong strategy with the pee tests.  I think we should have started with the pregnancy tests really early and done one each day.  That way it wouldn’t be such a big shock when you actually do it.”  So much for the consistency of our household philosophy.

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Exercise, Weight, and IVF

After a couple of cycles of IVF, I started to notice that that post-retrieval bloated look wasn’t really going away between cycles.   Yep, it was that dreaded cycle weight gain, 5 pounds or so per cycle.  After every cycle, I would start exercising again, get in some minimal amount of shape, lose a bit of the weight, start to feel better in my skin, and then it was time to cycle again.  Cr*p.

After my last cycle with my own eggs, I decided to take advantage of the situation to get really serious about getting fit again.  And can I tell you about the subsequent love affair with lifting really heavy stuff, and the total getting-in-fab-shape-itude that resulted, brought about by this fantastic book?  No?  Dang.

But in any case, what you need to understand is I love to exercise.  It not only makes short shrift of the IVF pudge, it makes me feel great.  As in sane.  As in something that is sadly missing in my IVF cycles, and I would like to have more of.

So that is why I got curious about whether it is OK to exercise during IVF cycles.  There’s surprisingly little information about this out there, so this is my small contribution.

Usual disclaimer: I am not a doctor, just a curious person.  This is what I found out but I may have missed something big.

1. Why do we gain weight when we are doing an IVF cycle?

I used to think that the weight gain was because I was doing comfort eating – lying on the sofa chowing frozen pizza instead of my usual veggie-intensive home-cooked dinners.  But for my most recent cycle, I was tracking my weight daily.  I was slowly (very slowly) losing weight before the cycle, thanks to my awesome weight-lifting routine.  On the day I started on the pill, my weight loss slowed even more.  One might even say I started gaining.  But that was nothing compared to the day I started Decapeptyl (this is basically the same thing as Lupron).   The day after I started taking it my weight started shooting up.  And it continued to skyrocket until I flew to my clinic just before retrieval… at which point I didn’t have my scale any more, so we don’t know what happened.  You should note that my exercise and diet did not change at all during all of this.

So where is this weight coming from?  Obviously, when you do a retrieval you get mighty bloated afterwards, and a lot of that weight is water weight which goes away again after things clear up.  But as far as I can tell the Lupron is playing a different role.   Unfortunately, I don’t remember where I read about this and so there is the chance that I am actually making this up (have I mentioned that I am not a doctor?), but my understanding is that Lupron alters your metabolism so that you are more likely to store carbohydrates as fat.  Once you go off the Lupron, you have high estrogen levels – from your leaky punctured follicles if you had a retrieval, from the estrogen patches or pills if you are on a DE or frozen cycle – and estrogen has the same effect.   Presto, weight gain.

Note: there may be other sources of weight gain that I know nothing about, this is what I did find out about.

2. So if I go on a low-carb diet during my cycle, will I avoid gaining weight?

Maybe.  But in my totally unprofessional opinion, it is probably not a good idea to be on a diet during your cycle.  You want your body to believe that it is not facing a famine – supplies are lush and there is plenty of food around to support little ones, so go ahead, baby, get pregnant!

3. I heard that it’s not good to exercise during your cycle.  Why is that? Because, frankly, I will go insane if I don’t exercise.

I hear ya, sister.  And it is for this reason that I searched in the bowels of Fertility and Sterility to find out more about the relationship between exercise and IVF.   There wasn’t much there. Here is what I did find out.

First, exercising during or after stims is a really bad idea because it can lead to ovarian torsion. “Ovarian torsion” is when your giant, swollen ovaries decide in their sympathy with your movement to do a cartwheel in your belly, thereby twisting off their blood supply.  As you might imagine, if this happens you will be in pain like you would not believe.  And unless you get to a hospital pronto and they untwist your ovary, you will lose it.  And that is something no infertile gal needs in her life.

What’s worse, even exercise the month after your cycle can lead to ovarian torsion, as this case study attests (warning: this is a pretty horrific story).   This is pretty rare, though.  One of my non-RE doctor friends told me that that didn’t need to stop me from exercising, I should just make sure that if I get terrible belly pain the month after stims I should rush to the hospital and make sure they check me for torsion.

Second, there might be a correlation between long-term exercise and problems in IVF cycles.  I only found one very short article about this so you might want to take this with a grain of salt.  And the gist of the article is not really actionable – what they showed was that it didn’t matter if you were exercising regularly now or not, but if you had been exercising regularly for at least 5 years, then you were at a higher risk for bad cycle outcomes (cancelled cycles, BFNs, chemicals).  It’s not clear why, it’s also not clear whether this holds true even if you account for low BMI (which is associated with worse cycle outcomes).

Now there are always a lot of studies that show correlations between various things and better cycle results (whole milk ice cream, anyone?).  Personally, I don’t think you need to live your life around this kind of thing.  But you might want to ask your RE what s/he thinks.

4. I’m not stimming – I’m doing a DE cycle / a frozen cycle.  So can I exercise?  Huh, huh, huh?

I guess you should probably ask your RE.  But if you want some free assvice which is worth what you pay for it, I say sure, go ahead – I did.  And let me tell you what was so great about it.

Like many people, Decapeptyl (i.e., essentially, Lupron) made me feel terrible.   Normally, I am a chipper morning person, but on Decapeptyl I have massive trouble dragging my poor sad body out of bed.  I also get a headache, am exhausted, can’t concentrate, etc.  But by exercising during my cycle I discovered that intense exercise made me feel 100% better, really quickly, and the effect lasted for quite some time after the exercise.  It was hard to believe when I woke up in the morning feeling like I got hit by a truck, but once I had dragged myself to the gym and started working out, I felt better right away.  Intense exercise that required concentration (have I mentioned how much I like lifting heavy weights?) totally dispelled the Decapeptyl fog.  It was like a f*cking miracle.

And this, my dear reader, is also how I found out the following amazing fertile fun fact, which to my knowledge is completely undocumented in the world of infertility blogs – I told my clinic about it and they did not know it either, so chalk one up for me, your amateur infertility sleuth.  I was amazed that even though the Decapeptyl made me feel like a hungover sloth, it did not seem to affect my athletic performance at all.  In fact, if anything, I was performing substantially better than usual… e.g. I improved one of my lifts from 7 kg to 9 kg in 2 weeks – an improvement of 30%, highly unusual).  That was when I remembered something I had read about a while ago… that Lupron is on the International Olympic Committee’s list of doping drugs.  That’s right, gals, for all the horrible side effects that Lupron and Decapeptyl hand us, they hand us one positive side effect as well – they make it really easy to build muscle.  As far as I can tell in my totally unscientific opinion, they do this because they block your estrogen production.  So take advantage of it while you can, until your estrogen patches/pills kick in.

Did I get something wrong?  Do you know something else about exercise and IVF?  Please add in the comments – I’d love to know!

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