Every week or so I get an email from someone who is experiencing the pain of infertility. These messages are heartbreaking and difficult to answer, especially because my journey has been so brief in comparison. Taking Clomid for a few months is nothing next to the rigors of IVF or waiting years for answers and treatment. All I have to offer is light and love. The heartache in waiting to be a mother is a very heavy burden to bear.
A few weeks ago, I got an email from someone named Anna who wanted to advertise her Etsy shop featuring cards for couples experiencing infertility. When I heard her story, I asked if she’d be willing to share it with you and she graciously agreed.
Ten questions for Anna (whose name has been changed) and her raw, honest answers below. As I’ve walked alongside dear friends who have experienced similar infertility journeys, I’ve noticed how hard it is for others to respond. Anna talks about that today. She also describes the terrible HSG in the way that it should be described (It is not just “minor period cramps,” it is death).
When Anna sent her responses, this is how she ended the email: Thanks again for allowing me to do this–lots of emotion here. Maybe it’s the progesterone, maybe it’s the exhaustion of it all, but I know for sure part of it is just getting this shit out.
Out of all the things I continue to learn in this life, most important is that when you’re going through the darkness, the best thing you can hear is, “Me too.”
This is for you, friends.
You are not forgotten.
1) How long have you and Ben been trying to conceive?
We have been actively trying to conceive for about 7 years and have been patients at our fertility clinic for 2.5 of those years.
2) When did you first know there was a problem?
My biggest fear growing up was that I wouldn’t be able to have kids. It was the most irrational and random fear I can remember as a child. But when Ben and I started trying (and failing) seven years ago, we just played it off as “not good timing.” When I finally mentioned some concern to my gynecologist, she just waved her hands around as if it was the silliest thing she ever heard and reminded me that I’m young and “it just takes time.”
So, for a year I tracked my cycles, took my temperature and prayed my heart out. Still nothing. A couples years later I was diagnosed with insulin resistance and found a wonderful endocrinologist who whipped my endocrine system into shape. She would often bring up our inability to conceive, but I stubbornly played it off. I didn’t want to ask for help. I can still remember walking to the car after an appointment, a yellow sticky note in my hand with the name of a leading fertility specialist, Dr. Williams. I sat in the car looking at it for a while before turning the key. It took us six more grueling months to call that number. And from there the rest is history. Here is a quick recap of our treatment from 2.5 years ago to today:
+ 6 rounds of clomid- 2 pregnancies (both early miscarriages)
+ 4 rounds of IUIs – all negative
+ IVF 1 – early miscarriage with twins
+ IVF 2 – PGDed embryos so no fresh transfer (PGD stands for pre-implantation genetic diagnosis–and lots of money)
+ FET 1 – negative (FET stands for frozen embryo transfer)
+ IVF 3 – banked our embryos (no fresh transfer)
+ IVF 4 – banked our embryos (no fresh transfer)–we did banking to that we could PGD
+ FET 2 – negative
+ IVF 5 – happening now!
Currently, we have 2 embryos still frozen and 3 more waiting to be PGDed then frozen if they are healthy.
3) What has been the hardest part of this process besides the waiting?
There are so many hard parts. I’ve watched best friends and family get pregnant and have healthy babies, host or go to baby showers, baby-sit, and listen to the woes of parenting. These are the things that get hard.
Perhaps most difficult is how we have felt so robbed of the typical reproductive process. The chance to feel the fun and excitement when trying to conceive and the joy and surprise when it actually works. These are often not joyous things for us. Instead they are riddled with fear and terror. Will our HCG number double in 48 hours? Will this be a viable pregnancy or is this another loss? Did all this money, time, energy and emotion just disappear again?
We just won’t be the couple that accidentally gets pregnant, gets to completely surprise our family, or can fully and blindly trust that our embryo/baby will live to the next day or week. What we’ve experienced has taken that naivety and innocence away. We now know how easy it is to lose, not just once but again and again. These are the things I think are hard, it feels like highway robbery.
There are so many other hard things like my faith, the big picture process of it all and the idea of what it means to be a woman through all this. But, that’s for another day.
4) Has your perspective/conversations changed since starting 7 years ago?
Yes. The most notable change has been imagining our life without children. For the first few years of trying it was all about: How many kids? How far apart? What if we had all boys or all girls? As time passed, our conversations became about what is would be like having just one child. Then, years later, we had the hard conversation about the possibility of never having children.
Surprisingly you become ready for each conversation as they emerge. There was a period of time when we agreed we are very happy with our life together and could live a fulfilling life without kids. We would be OKAY. Now that we have some embryos frozen through IVF, we are back to the idea that we will have children one day.
5) How has IVF been going?
This is most likely our last attempt using my uterus. Our embryos should be implanting since they are genetically normal, but after two rounds of those embryos not working, the doctors are concerned it may have something to do with my uterus. Even though it’s in beautiful shape and show no signs of sickness, there can still be trouble that is unseen. Basically I may not be able to medically carry a child. It is heartbreaking.
The next step is surrogacy.
6) What does that look like?
Again the conversation and perspective of things continues to change. What would it be like to not carry my own children? To not be pregnant? To not know what it’s like to feel a baby kick and grow inside of me? These are the very real questions I’m flooded with every single day–and so far I don’t have the answers. I do know that we’ll be ready if the time comes to face those questions and navigate our way through them just like all the other layers of the process so far.
7) If you feel comfortable sharing, can you describe some of the physical toll you’ve had to endure over the past 7 years?
From the beginning, I’ve been in awe of my body. It is so strong and resilient even though the end result hasn’t been what we’ve been hoping for. When we first started on Clomid, I was so nervous to take that first pill. I’d heard so many things about what Clomid can do to your body, mind and soul. But now that I’m deep in the throes of IVF, taking one little pill for four days out of cycle feels like a vitamin. I had my bad days on Clomid, but they were only in four day intervals so I could managed the other 24 days of my cycle pretty well. When we moved to IUIs, it was a similar experience. Even though it was my first introduction to injections, it was at max two injections during a cycle, followed by the actual IUI itself.
I was managing all of this pretty well with a high pain tolerance, but I should mention that I also had surgery to check for endometriosis and the recovering excruciating! I also had an hysterosalpingogram (HSG) before we started any treatment at all, and still to this day that is the worst pain I’ve ever experienced in my life. The lady before me was screaming, crying and throwing up. Literally someone’s husband passed out from just watching. By the time they called my name, I was shaking in my hospital gown, ready to ditch the whole thing. But I did it–and my tubes were open (a good thing).
Then came IVF!
IVF is not for the weak and weary, nor is it for the control freaks and anxious (me). There are many different protocols for IVF, but most are similar in their pattern of events. My protocols were about six weeks long from the first day of treatment to the day of transfer. So, for me it started with two weeks of birth control (yes, it was so strange to take this, but it resets your system and allows the doctors to better manipulate your cycle), then requires an ultrasound to confirm everything is clear to go. Next up is daily injections. I had to be on a pretty high dose every single round, so I would take up to three injections a day for about two weeks. During those two weeks it requires daily ultrasounds (always internal, always) and blood work. My clinic is over an hour away, so it would require driving two hours a day, usually very early in the morning, only to go back to work all day and then home for injections (then do it all over again).
As my follicles would grow, I would get very bloated, irritable, and tired since my body was working so hard. Eventually my follicles (which hold an egg) would become big enough to retrieve, which means it’s time for a process called egg retrieval. That’s where I’m put under anesthesia and they go in and take out all of my precious eggs from my ovaries to fertilize with Ben’s “sample.” I had anywhere from 21-34 eggs retrieved per cycle, so my ovaries were so swollen and sore. After retrieval I would wait five days for a fresh transfer (where they transfer back 1-2 embryos in a very specific part of my uterus) or let my body heal and four weeks later start a whole bunch of other medications for a frozen embryo transfer.
After a transfer I sit around for a couple of weeks trying not to pull my hair out and do all the things I’m supposed to like stay calm, positive, and believe. Easier said than done. Honestly the biggest toll on my body was waiting to find out if it worked. It can be such a mind game, and stress, fear, and sadness can really take hold in your body. There were so many rounds I thought it worked only to get a call saying my blood work results were negative.
8) How have you and Ben been able to sustain a healthy relationship while struggling through testing, procedures, and disappointments?
I’ll be honest, there have been some really difficult moments. We’ve been through a lot together; both getting our graduate degrees, him finishing his Ph.D., and opening a business together. Some of our most epic and memorable arguments have originated from this infertility process. We have to make decisions every month that fertile couples do not. Decisions that are not easy and will impact us for the rest of our life. Decisions like, what does the hospital do with our frozen embryos if one of us dies? Both of us die? Who do they go to? How many do we transfer? Do we want twins? Do we want to know the genders and select which ones to transfer? Do we transfer the lower graded ones or higher? Should we keep the better ones for later? Will we ever use all these embryos? If not, what should the hospital do with them? What should the hospital do with our embryos that die?
It’s easy to get tripped up not just over the answers, but over the fact that we have to deal with this in the first place. Every day we are faced with embryo updates, cell levels, follicle numbers, injection reminders, cycle day updates, and blood work results. This process consumes every part of our life. We learned very early on that we needed to protect our relationship as much as possible through this. It was very difficult at first, all of it seemed so unnatural, manual and contrived.
By the time we reached IVF, Ben made the comment that he is just the “stud horse.” It was funny, but I also realized that’s very much what it feels like to him. So we’ve worked hard to make sure he’s included in the process. He comes to appointments, checks in for updates, is involved in the decision making, is at all of the procedures, and takes care of me after every retrieval and transfer. Most recently he’s also been giving me all my progesterone shots (which are intramuscular and straight in the butt cheek–he enjoys this very much). He has had to work through his own feelings as a man going through the process of infertility. It’s so different for both us. We grieve different things, experience things differently, and if we aren’t careful–can feel unsupported or unheard by the other. As the time went on, we both had to learn a lot about each other and how to comfort and soothe the hurt places that we didn’t know existed. He knows to hold me through bad news, an offensive comment thrown our way, or when I’m doubting myself as a woman who may not give birth. I know to reassure him he is enough for me, he is valued through this process, and that he matters in all decisions and procedures. These are the things that truly matter to us.
Probably the most important element for us has been humor. We’ve learned to laugh through some of the most uncomfortable moments of this. We have many jokes surrounding our doctors and others we’ve encountered at the clinic. The ridiculousness of it all has helped us get through some really hard times. I’ve always appreciated I could laugh with Ben and I’ve never felt more grateful for that than in the last 2.5 years. It’s a daily thing, but I do feel as though we’ve learned to appreciate each other more through this on our good days and our bad.
9) I know that sometimes people trying to help often end up doing more harm than good. What advice can you give to those who know someone struggling with infertility?
Having sensitivity and really listening. So often I might share something that feels scary to me and someone will say, “Well when I was pregnant…” or “Oh, I remember when we were trying….” None of that is not considered listening, it’s considered talking about yourself. I understand a lot of times it comes from a place of not being able to relate and a real desire to comfort, but it comes off as just another person who doesn’t get it and doesn’t want to try to get it.
Recently I was talking with someone who is well aware of what we are going through, and the conversation turned to having children later in life. Comments were made such as, “I’m so glad we didn’t have kids in our 30s and 40s…” or “I can’t imagine having kids that old…” Um, well I can. That’s my reality. I don’t have a choice like most others.
Of course I don’t want people to say pad things or say, “I don’t want this to offend you.” How mortifying. I just need sensitivity. A realization that everyone has a different journey and enough self awareness to step outside of your experience and really hear someone else. I had another person close to me complain about her kids only to turn to me and say, “Are you sure you want to have kids?” It was one of the most hurtful things anyone has ever said to me because of course I’m sure! I have to choose wanting children every single day. Every day when I inject myself, suffer from hot flashes, and deal with mood swings. Every month when I pay the clinic and go through the heartache of loss and grief. Believe me, I’m not just doing this for fun or to see what happens. I have to choose it every day in order to make sense of what I’m doing.
We’ve also had people who find out we are struggling with infertility and quickly say, “Well, you can always adopt.” This is something we have had to deal with a lot. Adoption is certainly not off of the table for us, but we don’t want to approach adoption as a last option. Instead we want to fully choose it because that’s what we want to do, not because of any other impatience in our heart. Ben was adopted and I thank Jesus for that because I never would have met him otherwise. We have definitely considered it, but at this point we are focused on our 5 embryos that have an 80% chance of life. Until we are sure about their fate, we cannot ethically and mentally consider anything else. Right now we are choosing to give our embryos a fair shot.
Hugs and care packages also go a long way. We’ve had so many friends drop off baskets of goodies on our porch when we’ve got bad news. There’s also been an outpouring of visitors, meals, and lunch dates just to talk about how I’m doing on my medication. It’s been really amazing to see friends and family who knew nothing of infertility now asking me about my estrogen levels and fertilization reports. I’m so impressed by these people. They started from scratch just like us and chose to learn. It goes a long way.
10) What has been the most helpful piece of advice or wisdom you’ve used to stay strong through this process?
Two things. One, I am not in control. Sitting at home pacing, picking my face, or stuffing my mouth with chips won’t change what’s on the end of the lab work, embryo report, or ultrasound.
I also have to constantly tell myself, “You, Anna, are not forgotten.” I spend my life and career helping people work through the hardest moments of their life, and I now know what it’s like to ride that wave with no land in sight, only to trust and lean on the others around you. There have been mountains and valleys of emotion–oceans and desert of tears–but we are remaining hopeful that we are not forgotten through all of this and someday, we will look beyond the suffering to something more beautiful than ever expected.
Anna lives in Virginia with her husband and two cats. She is a lover of people who use their blinker, flash mobs, and real mayo. She is currently working on a book about the woes and challenges of infertility which will hopefully be out next year. She has also just started a new line of greeting cards for couples trying to conceive hoping to provide inspiration and support through the mailbox. A link to her shop here.