It’s getting close to game time. Next week, on the 24th, I begin my IVF protocol. It starts with a baseline ultrasound to see what’s happening in my ovaries. To get a sense of the potential. I’ll also be doing a blood draw to check hormone levels, which will be closely monitored over the next two weeks. That day I will also start injecting myself with medications to stimulate my ovaries into maturing more eggs under carefully controlled conditions so that my body doesn’t go rogue and ovulate them before the doctor can surgically collect them.

The plan is to do ICSI, which is where they inject a healthy looking sperm directly into the egg to fertilize. Then biopsying for Pre-implantation Genetic Screening (PGS), cryogenically freezing the embryos (every time I say that I feel like I’m talking about a science fiction story), and waiting for PGS results. If we have at least one normal embryo we will likely be doing the ERA test (endometrial receptivity analysis) to determine the optimal time for a frozen embryo transfer. And then, finally, we will put that little baby back where he or she belongs!

I’m nervous about my potential for producing eggs – quantity and quality. A while back I got my AMH (Anti-Mullerian Hormone) results. This test tells me about my ovarian reserve. The last time I did IVF, in 2013, it was 1.3 ng/ml, which was on the low side for my age. My breath caught when my nurse told me it’s now 0.66. Lower is worse. I really wasn’t expecting that much of a drop. I did some research and found a nice chart from the Center For Human Reproduction’s website. They are a leader in infertility treatment for women of advanced maternal age, as well as managing diminished ovarian reserve in all aged women. Their article on AMH can be found here. They give age-specific AMH levels, which is more meaningful than non-age related averages. Here’s their cart, which includes FSH levels too (unfortunately I didn’t get my FSH level this time):

(Note: The US uses ng/ml as the units of measurement, other countries vary.)

At age 36, the first time I did IVF, I was about 0.4 under the AMH level for my age group. This time around, at age 39, I’m 0.44 under for my age group. Well at least I’m consistent. So this means that once again I will be on the max dose protocol for stimulation. This also means that I may get fewer eggs this time around than last time. Last time I had 8 mature eggs retrieved, 7 fertilized, 4 made it to day 5. Of those 4, one was really lagging behind so they watched it another day to see if it would catch up. It didn’t, so we lost that one. The other 3 were also a little slow but looked decent. My RE recommended transferring all 3 due to their quality, my age, and the condition of my uterus. Transferring 3 was a shock to us because I never even considered that, but we were given a very low chance of all 3 sticking. At my first ultrasound shortly thereafter we found that one of those little embryos implanted and grew into my beautiful daughter. So this basically means that from 8 eggs, 1 was healthy.

With an even lower AMH this time, I’m scared. I know AMH isn’t the end all, be all, and I could have even more eggs than last time. But I could also have less. I keep reminding myself that it only takes one healthy egg. I’ve been diligently taking my doctor-recommended supplements to support healthy egg development. But it’s easy for me to slip into fear. Fear that I won’t have many eggs. Fear that they won’t be found “normal” on PGS testing. I recently had my genetic counseling appointment, which was a requirement before PGS. The counselor told me that for my age group, about 60% of the eggs come back abnormal. I realize that statistic is an average and any one woman could have more or less. But it’s hard to not think that my chances would be better if I had more eggs retrieved. Every time I start to fall into that fearful mindset, I focus on two words: trust and faith.

You see, I have this vision. A vision of my husband and I. He’s holding our toddler and I’m holding our new baby. As crazy as it sounds, I feel like I already know this baby. I feel like it’s part of the Divine plan for us. Against all odds, I just know this is going to work. Now, like I said,  it’s really easy for me to lose touch with that sense. Especially when my logical left brain takes over. But that’s when I come back to those two words that give me solstice. Trust. Faith. I trust my intuition. I trust that my body can do this. I have faith in Goddess. Faith in the bigger picture. These words mean many things to me. So they are my mantra. And I’ll be repeating them silently to myself all morning on the 24th. Hold on. This is going to be a wild ride.

At some point, or perhaps it’s daily, in every women’s journey with infertility, a tummy turning, heart pulling beast will rear it’s ugly head. That beast is guilt.  Guilt is one of the intense, distressing emotions common to infertility. From a cognitive psychology perspective, guilt is an emotion people experience because they think they have caused harm. Maybe it’s something you think you did, should have done, or didn’t do that you should have that supposedly caused the harm. These thought’s, these “could have,” “should have,” “would have” thoughts, are rampant during infertility treatment. And they set us up for extra doses of anxiety, worry, and all the second guessing that goes along with that.

Let me explain. Just the other day I ate a cupcake. This came after I got back from a work trip where I indulged in desserts after dinner, extra cookies at lunch, more gluten than I normally have, and no exercise other than some light walking. And if I’m being honest, let me add that I haven’t really worked out in I don’t know how long. But somehow it was the cupcake that was the final straw.  The icing on the cupcake, I suppose. And the guilt flooded me. I began to freak out that I’ve seriously damaged my chance of producing any normal, healthy eggs due to my poor eating and sedentary lifestyle. I should be eating healthier. I see all these other women in infertility forums posting about their fertility smoothies and special fertility diets, and I feel like I’ve failed myself already. I know I should be eating healthier. I should be getting more exercise daily to counteract my computer-heavy job. I would be exercising more if I could just get caught up on the laundry. And there goes my mind, down the rabbit hole.

Infertility treatment is marked with so many different procedures, tests, options, decisions, medications, supplements, recommendations, advice, opinions. Over the course of infertility, a woman will be faced with so many different recommendations from doctors, nurses, friends, family, books, articles, and the internet that it is maddening. Google will give you countless ways to increase your chances of success. And the thing is, there is no one right way. No one path that will get you to the baby of your dreams. Everyone is a little bit different. But we are all bombarded with information, often partial or inaccurate information, but information none the less. So what do we do with all this information?

On the one hand, I’m incredibly thankful to live in a day and age where information is at my fingertips. I have learned more than I ever thought I would know about my reproductive system, how babies are really made (both naturally and through the help of science), what tests and procedures are available to help me conceive. I’ve also been able to find support, albeit online, from other women going through the same fight as me. If it weren’t for certain infertility forums and groups, I may never have been able to share my struggle with other women going through infertility treatments, as I don’t have any real life friends that have been there, done that. Through the internet I’m able to learn and share in ways that I never would have in a time long ago and galaxy far far away. This helps me be a better advocate for myself, make more informed medical decisions, and feel less alone.

On the other hand, sometimes information can become overwhelming. If I did all the things that I’ve come across that could supposedly help me become more fertile or improve my chance for success with IVF, it could literally become a full time job. And it can be really hard to tell the difference between what “latest thing” will actually make a difference or not. So this is where I circle back to my cupcake guilt. With so much information about what I should or shouldn’t be doing to support my fertility right at my fingertips, it’s really easy to put excessive pressure on myself. “I ate a cupcake” quickly turns into “I shouldn’t eat sugar because it’s going to damage my eggs.” But is it? Honestly, I doubt it. Yes eating healthy is good for me for so many reasons that go well beyond fertility. But the occasional cupcake, or even a longer splurge, isn’t really going to make or break my IVF.

So here’s what I learned the first time around, that I need to remind myself of during this round of IVF. This process is hard. The “kick you in the gut, stomp on your head, and rip your heart out” kinda hard. There will be good days and bad days. The first time around I had a lot of bad days. I mean a lot. And I still got pregnant. Despite all of the guilt and second guessing my every action or inaction, I still got pregnant. I was a miserable mess of anxiety, but I still got pregnant. So this time around, I’m reminding myself that I don’t have to be perfect to have success. I can give myself a break and let the guilt wash away. I can allow myself to have a better, calmer experience this time around. Or at least a little less insane. Because the truth is, it won’t really change the outcome, but it will change the process and how I emerge at the other end of it all.

This week is National Infertility Awareness Week (NIAW). But I don’t think there will be any parades. No one will be wearing a certain color to work to show their unity. There won’t be ribbons. In truth, most people have no idea what infertility is really all about. Infertility is a silent illness. But it shouldn’t be. One in eight couples suffer from infertility. Look around you. Start counting off people. 1 in 8 is a lot. Yet most people still don’t know much about infertility – what it means, how it affects people, or what treatments are available. And they really don’t know how to support people going through infertility.

Many people have said unhelpful things to me during my years of infertility. Often they were well meaning, but uneducated. Others said downright hurtful things. So in honor of NIAW, here are some of the things I wish my family and friends had not said to me and why. If you are a family member or friend to someone struggling with infertility, read this. And pay attention.

1. “You just need to relax and it will happen”.

So this is probably one of the worst possible things you can say to me. When you say this you are basically saying that it is my fault that I’m not getting pregnant. And let’s not forget that for many women, infertility involves getting pregnant and having repeated miscarriages, so in that situation you are basically saying that it’s my fault I’m having miscarriages. Infertility is a medical condition. Now pause, and read that last sentence again.

If I had diabetes, would “relaxing” cure that? If I had cancer would you tell me that all I needed to do to beat cancer was “relax”? No, no you wouldn’t. Because you recognize that diabetes, cancer, and [insert any medical condition here] are physical illnesses that require medical treatments. Now is meditation, yoga, or other forms of physical and mental relaxation techniques beneficial for people with diabetes and cancer? Yes, of course they are. They are great coping strategies for dealing with the stresses of health related illnesses and overall good practices for your well-being and health. But they will not cure those illnesses. And they won’t cure infertility. No amount of relaxation will open my blocked Fallopian tubes. No amount of relaxation will remove the endometriosis inflaming my ovaries and compromising the health of my developing eggs. So just stop. Don’t ever say that to me again.

When you tell me to relax, I get really pissed off. Pretty much the opposite of relaxing. And then I have this moment of panic. Because deep down I am worried that something I’m doing, or not doing, is contributing to my infertility. I know that stress isn’t good for my health. As a psychologist I can name several physical conditions that are caused or exacerbated by prolonged high stress levels. And I know that I’ve been under significant stress during infertility. The relationship between stress and fertility is complex and still needs much research to really identify. Prolonged stress does impact hormones, which play a vital role in fertility. So yes, I do think I need to utilize healthy coping strategies for managing my stress during infertility.

But you tell me – after you go through a couple surgeries, have weekly vaginal probes by a doctor holding a wand while a med student stands  by your feet, and stick four needles a day into your stomach – tell me, how relaxed do you feel? Infertility is emotionally, spiritually, physically, and financially taxing. I’m trying my best to relax, to cope. You throwing it in my face is not helping. And let’s not forget that back before I knew I had infertility – back when my husband and I had great sex, cuddled in bed afterwards with my butt propped up on a pillow imagining that we just made our baby, and were so excited to find out in two weeks – back then I was really relaxed. And I didn’t get pregnant.

2. “It will happen when it happens.”

Thank you, Yoda, for this sage advice. So obviously I’m getting a tad bit sarcastic now. But infertility can do that to a person. I suppose you are trying to be helpful when you say this to me, but really it just conveys that you don’t know anything about infertility or infertility treatment. And it also conveys that you haven’t bothered to google it. The truth is that there are a lot of treatment options for addressing infertility and I have to make a lot of BIG decisions that will impact what happens and when. I can’t just sit back, kick my feet up on the coffee table, and wait for something to magically happen to cure my medical condition and drop a baby into my womb. In fact, if I just sit around twiddling my thumbs waiting for it to happen, my window of reproductive opportunity is going to get smaller and smaller. Saying this doesn’t help me. If this is all you have to say to me, please bite your tongue. A good alternative is to say, “I’m sorry you are going through this. How can I support you?”

3. “I’ve been thinking about you but I didn’t want to bring it up and upset you.”

So you’ve been thinking about me and my struggle with infertility, but you thought that I’d become upset if you mentioned the “I-word”.  (Pssst, that’s means “infertility”) Apparently if no one says it, I won’t think about it and become upset. Okay, let’s clear this one up. My days are filled with basal body temperature measurements, egg health supplements, fertility smoothies, medications and needles, doctors appointments, blood draws, transvaginal ultrasounds, fertility acupuncture, analyzing every twinge and ping my body has, hours researching IVF protocols, looking up strategies to help improve implantation, searching support group forums, and the list goes on. Infertility is already on my mind. You bringing it up will never ever make me say, “Oh shoot I hadn’t thought about that all day! I completely forgot about it. Why did you have to  go and bring it up?”

Here’s the truth: you didn’t want to bring it up because it makes you uncomfortable. My distress makes you squirm a little. Or a lot. Maybe you don’t know what to say. Maybe you aren’t sure if I want to talk about it. Maybe you don’t know how to sit with my sadness, fear, and anger. And that all makes you uncomfortable. Don’t put that on me.

In truth, some people going through infertility probably don’t want to talk about it with you. It can be hard to talk about it with someone who really doesn’t understand and may not say the most supportive thing. On the other hand, some people want to talk about it with you – to share, feel supported, and get out into the open all the heavy thoughts and emotions they are struggling under daily. Truth be told, some days I will want to talk to you and some days I won’t. But I get to decide that. Please don’t pretend you are looking out for me by avoiding me.

If you’ve really been thinking about me and want to lend me some support but aren’t sure if I want you to ask me, please just say that! Ask me if I want you to ask me about what is going on, how my appointment went, how I’m feeling. Ask me how you can support me. Trust me, I will tell you. And that will make both of us much more comfortable.

4. “You could always adopt.”

When you say this you are really telling me that you have no idea what adoption entails. And you are minimizing my desire to have a child with my partner. Do you know how much adoption costs or how long it takes? Do you know about all of the uncertainties, losses,  and ups and downs that happen in the adoption process? No, you don’t. Do you know what it would feel like for someone struggling with infertility to have a social worker invade their house and interview them, asking very intimate questions, to determine if they are “good enough” to adopt? No you don’t. I don’t either, but just imagining it while I was struggling to conceive my child was kind of a slap in the face. I also knew that we had a pretty good chance of infertility treatment working for us eventually. But if it didn’t end up working, well we probably wouldn’t have an extra $30,000 or more laying around to pay for adoption.

Adoption can be a beautiful gift. But it is not a decision made lightly by anyone. And there is a difference between wanting to adopt because of your moral values, beliefs, and preferences versus adopting because you are infertile. Certainly you can both have infertility and desire to adopt anyway due to your values. For some, adoption isn’t a viable option for a variety of reasons. And for some couples dealing with infertility, adoption isn’t the way they envisioned creating a family. And that doesn’t make them bad people.

5. “You should just go on vacation, then you’ll get pregnant.”

This one circles back to #1 above. This idea here is that we must just be “trying too hard” and if we could only relax, have fun, and don’t think about it (like when you’re having a great time on some tropical island), then we would get pregnant. So in addition to everything I said in #1, and probably #2 also, the only thing I want to add here is: do you have any idea of how much infertility treatments cost? Especially when insurance doesn’t cover it? I would love to go on vacation.  Will you pay for it?

6. “At least you get to have a lot fun trying to get pregnant. Hee Hee Hee”

If I’ve said it once, I’ve said it a million times…Anyone who says this has NEVER actually tied to get pregnant.

Fertile couples have sex to get pregnant. Or they make love. Or they share a bottle of wine, a great dinner, and get naked. Infertile couples have a completely different experience when trying to get pregnant. They use ovulation predictor kits, basal body temperatures, and cycle charting to time sex in the fertile window. They know how long sperm and eggs live for. They know that most women don’t ovulate on cycle day 14. For infertile couples, making a baby may involve a woman, a reproductive endocrinologist (RE), and syringe full of sperm.

This is what was in the big box of medications that went into making my daughter. I had to inject all of this stuff into my body. With big needles.

When my baby was made, my husband and I weren’t even there. An embryologist combined my egg with my husband’s sperm in a petri dish and the miracle of life happened. Then 5 days later, in a dimly lit room, err doctors office, my husband held my hand as the RE gently placed my little embryo into my womb. My husband got to see the image of this on a screen because I had an ultrasound wand up my vagina at the time. It was February and Christmas music was playing in the background. As bizarre as it sounds, it was pretty amazing. To see my tiny embryo-baby placed into my womb where she would implant and grow. Although at the time I didn’t know if it would work, so I was a bit apprehensive too. The whole thing was surreal. It wasn’t how I was taught about where babies come from.  I was instructed to lay there for a half hour and my husband sat by my side the whole time.  My acupuncturist entered the room as my RE left and stuck a bunch of tiny needles in me, which has been shown to improve IVF success rates. This is how I got pregnant.

I don’t think I’d use the word “fun” to describe this baby making. But given how many hormones I’m on, if you say this to me again I’m going to punch you in the face. Okay, maybe I won’t really do that. But you can be sure that I’m definitely thinking about it.

7. “You have an emotional block. Something is preventing you from getting pregnant.”

This is another one of those dangerous, blaming statements. You are saying that this disease of infertility is my fault – that I’m causing it. Do I have some emotional baggage? Sure. Everyone does. Trust me, as a psychologist I know we all do. But I’m actually pretty proud of myself for facing my emotional traumas head on, getting help when I needed it, working through it, using some healthy coping skills, and growing into the strong, healthy woman that I am. Saying that I must have some deep-seeded emotional block interfering with conception is hurtful and medically inaccurate. Learn more about the causes of infertility before you venture down a psychological rabbit hole.

8. “Have you tried xyz?”

Yes, I have. I’ve also tried “abc”, “def”, and “ghi”. In fact, I’ve tried everything from “A” all the way to “Z”. I get it; you’re trying to be helpful. You heard that a friend of a friend got pregnant after doing fertility yoga and another friend got pregnant after taking clomid for two months. But I’ve been doing yoga for a couple years now and I’ve done more clomid cycles than I probably should have. Trust me,  anything you can come up with – I’ve heard about it and I’ve probably tried it. Please don’t try to fix me. Just listen to me. Offer your support by just listening.

9. “All I had to do was look at my husband and I got pregnant. Want one of my kids?”

Stop for a minute. You are talking to someone who has been struggling with infertility for years. Why on earth would you say this to me? If I made a list of the top 3 empathetic failures for relating to couples with infertility, this would be on it. Think before you speak. And yes, I’ll take that cute little one since you are so willing to give him away.

***

So, dear friend or family member, I know that you really do love me and want to support me. But here’s the best way to do that. Ask me what I need. Respect and accept whatever I say I need.  Tell me that you are here for me and that you’re sorry I’m going through this. And then just listen. Even if I say the same things over and over again. Just listen.

Artwork by Lori A Andrus

Here I go…writing my first post. I guess I should start with some background. First, a little about me. I’m a psychologist. A wife. An earth child. A moon lover. I’m independent, smart, opinionated. A feminist. I’m a pagan and I lean toward a goddess path. I am a goddess. I have endometriosis and scarred Fallopian tubes that apparently don’t work well. I’m infertile, but then I became fertile. Well at least I did after countless infertility treatments, 2 surgeries, and a successful IVF. Does that count? I guess I’m somewhere in between. So now I’m a mother, something I pretty much never though I’d be. Oh and I’m turning 40 any minute now.

My little love is a rambunctious toddler, and I’m starting down that infertility road again. I want my daughter to have a sibling. My husband and I want another child. Don’t get me wrong, I feel really blessed to have a child after the dreaded infertility diagnosis. I know IVF doesn’t work for so many couples. I don’t want to be stingy. But I can’t shake it – that desire to grow my family. That’s normal, right?

I really, really thought I would be one of those lucky people who conceive naturally after IVF. You know, one of those magical unicorns we all hear about. Well, that didn’t work out and so here we go again…

That brings me to this blog. The first time around was rough. I was lonely, scared, angry, overwhelmed, sad, hopeful, hopeless. If you’ve struggled with infertility then you know just how many more adjectives I could add on there. I felt disconnected from myself, my family and friends (except for a few that held on through the discomfort), my body, and my spirituality. To say that it was hard emotionally, physically, mentally, spiritually, and financially is really an understatement. I never thought I’d do IVF again because I didn’t want to go through that again.

But time does heal. It doesn’t make us forget. So as I ready myself to embark on this journey again, I want to do some things differently. Mainly I don’t want to lose myself again. I want to put what I learned the first time around to good use. No amount of worrying, sleepless nights, anticipating the worst, and panic will change the outcome. I got lucky. IVF worked for me the first time. I know what the statistics say about that. I know I may not be so lucky this time around. But freaking out won’t change the outcome, it will only impact the process. The journey. So I’m hoping that writing this blog will help me keep my sanity, keep me firmly grounded on the earth and connected to Goddess,  and maybe it will resonate with someone else too. Wish me luck…