What I Want You to Know About Infertility
It’s National Infertility Awareness Week. Here’s what that means to me, a person diagnosed with infertility.
Did you know that there’s an International Pooper Scooper Week? How about Coin Week? Oh, and don’t forget National Princess Week, in America, which is clearly needed to combat the horrendous issue of little girls not aspiring to princess status enough in this country.
When I found out that April, in addition to those special weeks above, also contains National Infertility Awareness Week, I was skeptical. Does a generalized sense of “awareness” in an information-oversaturated world really help anyone? Is it even possible to spread awareness to those who don’t already have it through experience?
But then I remembered all the misconceptions about infertility that I had before I became a statistic of it, and all of the well-meaning but not-always-helpful conversations I’ve had with people about infertility since then.
Infertility is so common — 1 in 8 couples will experience it. Someone you know will go through this in some form. While the stigma around it is lifting, it’s not gone. The only way to make it disappear is to talk about it.
So here’s a very subjective and incomplete list of things that I (a 36-year-old, married, white, hetero, cis woman whose experience is solely mine) want you to know about infertility.
Infertility is a blanket term that can have many different causes.
People get diagnosed with infertility if they can’t conceive after a 12 consecutive months of “trying,” or after six months if you’re older than 35. But that initial diagnosis gives no insight into the actual cause, plus it doesn’t fit for gay couples, trans people, single people — not everyone who needs to access Assisted Reproductive Technology even has the ability to “try” before they see a specialist.
I was laying on a surgical table, gripping a nurse’s hand and peering through tears at a monitor showing what my doctor called “suspicious” results of an HSG test when I finally got a diagnosis I could understand: blocked Fallopian tubes. My husband and I had been told to just keep trying, that whatever wasn’t working was likely a simple fix. But the only fix for blocked Fallopian tubes is to surgically remove them and then do IVF.
There are so many other reasons why both men and women get this diagnosis, and sometimes, it’s just “unexplained” infertility — perhaps the most maddening answer of all. Medical professionals have debated whether infertility is a disease or a symptom, and it could be both or either. Some people just need a little help, and some people, like us, need a lot.
IVF is really a two-part process. Here’s how it works.
(Obviously ask your doctor how it works. This is a vast oversimplification that leaves out a lot, including some of the meds that people take before a cycle even starts to prep your body, depending on what you need.)
Part 1 is making the embryos. You take hormones that stimulate your ovaries to prepare a BUNCH of follicles, containing eggs, rather than the one single follicle that normally grows prior to ovulation. Most of these drugs are injected with 1/2-inch long, very thin needles that honestly do not hurt that much.
Because of the drugs, you can’t have alcohol (fine) or ANY caffeine (wut?!). Because your ovaries grow from the size of almonds to the size of oranges during this 10–14 day process (again I ask, wut?!), you can’t lift anything heavier than a gallon of milk or twist your body or exercise. You go to the doctor every couple days (every day when you get closer to the end) to get a transvaginal ultrasound (fun!) and a blood draw to monitor everything. At about the mid-way point, you start taking an additional drug to suppress ovulation, so that you don’t release all those eggs before the doctor can get ’em.
By the time you are ready to rock and roll, you may feel like an overstuffed goose (just me?) waddling around full of follicles. It’s weird and cool and very tiring. Your doctor schedules your egg retrieval and tells you EXACTLY when to administer the “trigger shot,” another hormone in a high dose that will make your follicles ready to release the eggs precisely 36 hours later.
When you go in for the egg retrieval, your male partner (or whatever source of sperm you’re using) goes with you and ejaculates into a cup, sorry, there is just no nicer way to say that. (Deposits their sample? No, that’s worse.) Meanwhile, you get prepped for a minor procedure, get knocked out for about half an hour while the doctor retrieves the eggs, and wake up groggy in recovery with a magic number — the number of eggs retrieved.
This number can vary greatly. 3 is fine. 5 is fine. 10 is good. 20 is better. 30 is even better, but could also signal that a lot of them won’t be mature. The reality is that technically you may only need one.
I’ll use my own numbers from my second retrieval as an example for what happens next. I had 24 eggs retrieved, a fantastic number for me. 14 of those were mature enough for fertilization (which they can’t tell until they get them under a microscope), and 10 of those actually fertilized. Five days later, we got a call that 3 of the embryos made it to blastocyst stage, at which point they can be frozen for a future transfer (what we did) or one can be implanted in a “fresh” cycle about 2 weeks after your retrieval. On day six, we learned that one more embryo made it, so we were able to freeze 4 embryos in that cycle, and that’s really a good outcome.
Part 2 is the embryo transfer. (Sometimes, in between, you get the embryos biopsied and tested to determine if they have the right number of chromosomes to survive.)
To prepare for an embryo transfer, you have to inject progesterone into your body to trick it into getting ready to be pregnant. This is the part with the scary needles, the one-and-a-half inch long, thicker ones needed to inject progesterone in oil into your muscle layer. It hurts, and it’s best to have a partner do it for you, and nothing will bring you closer quite like one of you injecting the other in the butt every day.
You do this for about a month, and then you go in for the embryo transfer with an “uncomfortably full bladder” (this is literally the instruction) and watch on a monitor while a doctor inserts your microscopic embryo into your uterine lining. It’s absolutely wild.
And then, you wait, about two weeks. This is an excruciating time in which you continue the progesterone shots and have to act as if you might be pregnant, but you can’t know until at minimum 10 days later. You get a phone call after your blood test and you can tell by the tone of the nurse’s voice whether you’re pregnant or not.
The worst part is the waiting.
I wrote a whole essay about this! So you can read that if you want, but it’s worth briefly repeating here: infertility treatment is all about waiting. For your next cycle to start, for results to come back, for your life to move in the direction you so desperately hope it will, for your children to come into existence.
Adoption is not a consolation prize.
Adoption is a wonderful way to build a family, and for many people, it’s their first choice. It also comes with its own complications and barriers. You don’t have to have infertility to consider adoption, and you don’t have to consider adoption if you have infertility.
Please don’t tell people struggling with infertility “you can always adopt.” They know that adoption exists. Also avoid the cringe-worthy “why don’t you just adopt?” as if you’re talking about going to Home Depot to pick up a snake plant.
When I was in my early twenties, I distinctly remember telling my now-husband that if we couldn’t get pregnant naturally, I wouldn’t bother going through “all that painful, difficult stuff” to get pregnant. We could “just adopt,” I said.
Now we’re in the middle of our third IVF cycle. Hopefully, this will lead to a successful embryo transfer and a pregnancy. I would do it all again, and I will, until we have a kid or the doctor tells us there’s nothing left to do. Or until we change our minds, again, which is allowed.
I don’t know if we’ll adopt. What I do know is that adoptees and their families of origin deserve adoptive parents who have entered into that process thoughtfully, deliberately and happily.
Despite what Paris Hilton says, IVF does not guarantee a baby.
It’s not Paris Hilton’s fault for thinking that IVF is an easy breezy procedure available to rich white women so that they can have a baby at any time, with the sex and characteristics of their choosing. That’s pretty much how it’s been portrayed — and marketed by some unethical clinics over the years — and what a lot of people have absorbed.
The truth is that you can be 23 or 43, in perfect health or with many complications, and it doesn’t change the fact that IVF might work for you — and it might not.
Of all the crushing blows we’ve received on this epic journey, the worst may have been when our first round of IVF yielded only a single viable embryo. I had convinced myself that the hard part — the surgery — was over, and that IVF would be a pain but that it would work, easily.
And the thing is that it did work, in that we got some eggs and we got some embryos and one survived. We also got information for our doctor, who adjusted my medication accordingly for the next time around, which got us four more embryos. So far the embryo transfers haven’t worked, but we’re doing more tests to increase our chances for the next time.
IVF success rates are about 50%; with more information and testing, you can boost those chances, to about 70%. Nothing is guaranteed.
If you know someone going through IVF, instead of saying, “Of course it will work,” which is a lovely and encouraging but potentially devastating thing to say, try “I’m hopeful for you!” or “Best of luck!” or simply give them a (vaccinated!) hug. And know that IVF is no one’s first choice.
It doesn’t matter what worked for your cousin’s neighbor.
Recently I found someone on Instagram, posting about her infertility experience, who could be me. She’s the same age, lives in Chicago, had blocked Fallopian tubes that were removed, and also has undergone two rounds of IVF and two unsuccessful transfers.
I almost messaged her to share our freaky similarities, but I realized that it might be best to simply “like” from afar. Because while we could certainly bond over our experiences, we could also cause each other inadvertent anguish. One of us could get pregnant, and then *poof* we’re in different lanes, and the one still on the fertility treatment track is left in the dust.
Comparing yourself to strangers online is always a bad idea, of course. And so is comparing your medical treatment plan to anyone else’s. And so is telling your friend with infertility about what worked for your coworker’s sister-in-law.
I’ve heard so many secondhand stories about people who allegedly tried IVF, it didn’t work, then they “weren’t even trying” and bam! Knocked up! I guess these stories are meant to be inspiring. Maybe they would be for someone else, but for me, they’re twisting the knife of my diagnosis. There is no possibility that I will get pregnant without IVF — ever. No matter how much I do the thing that worked for your cousin or try acupuncture or eat salmon or do Pilates or pray or take magic supplements or — worst of all — relax.
Shockingly, TV gets it wrong (most of the time).
In the episode of Friends in which Phoebe gets pregnant with her brother’s babies, she gives the embryos a pep talk in their Petri dish and then later that day sees a positive pregnancy test. Surrogacy! It’s easy!
I can’t fault that episode because it also brought us the classic composition “Are You In There, Little Fetus?” Nor do I expect the 90s sitcom to have shown Phoebe undergoing multiple tests and taking daily progesterone shots and estrogen suppositories.
Now, some shows at least try to portray what infertility treatments are really like, but often they just show a woman whipping a syringe out of her purse and injecting herself with it and then later she’s pregnant. What actually happens is left up to the viewer to figure out.
The one exception I’ve seen is from the Netflix series Friends From College. When the characters played by Cobie Smulders and Keegan-Michael Key are undergoing IVF, we see their doctor accurately describe the process; we see Smulder’s character with bruises all over her abdomen from shots; and we watch the horrifyingly funny series of events surrounding their trigger shot, which gets dropped on the bathroom floor, causing the couple to nearly rob a pharmacy and then beg their doctor to change their egg retrieval appointment so that it lines up exactly 36 hours from the trigger shot that they have to administer late. It’s all painfully realistic (and great TV) because the creators, a married couple, went through it themselves.
I get that the mundane and unsexy parts of infertility treatment aren’t the stuff of Emmy-award winning television. Still, I wish that more shows could portray a sliver of the reality.
Doctors can get it wrong, too. Advocate for yourself. Get the tests.
My infertility was caused by a medical mistake, made by an oblivious doctor who misdiagnosed my appendicitis as basically bad menstrual cramps when I was 16, leading to a ruptured appendix that caused internal scarring I wouldn’t discover for another 17 years.
I don’t blame my current ob/gyn for not figuring this out sooner; she instructed us to try for a year and then referred us to a reproductive endocrinologist (AKA fertility doc) when nothing happened, and we found out the problem pretty quickly from there.
But I think all the time about what would be different now if I had this diagnosis sooner, if any doctor had ever thought to dig a little deeper into my medical history and question if my ruptured appendix, which made me sick for weeks after my emergency surgery to remove it and nearly killed me with sepsis, had caused any lasting damage in my body.
My husband and I have been together since we were 19, and married when we were 27. We weren’t ready for kids sooner than when we started trying to have kids, but we could have done the first part of IVF — getting the eggs out and making the embryos — years earlier, kept them on ice until we were ready.
Maybe that wouldn’t have worked out; we didn’t have the same income and insurance when we were younger, not to mention the emotional fortitude that comes with age. I would have liked the option, though.
If you think something is wrong, get it checked out. Having the information doesn’t necessarily mean you have to do anything you’re not ready for; it just means that you know what you’re up against.
It’s possible to be happy for others and sad for yourself all at the same time.
This is a VERY touchy topic, for good reason, in the infertility community, and my perspective is just that — mine alone. But for what it’s worth, I love seeing the babies and pregnancy announcements of friends and family. (I do not love seeing the babies of strangers or celebrities or distant acquaintances. Good for you, but I don’t need to know about it.) Still, it also sometimes make me sad.
After our second embryo transfer failed, my cousin, who I’m very close to, called me practically in tears. She was pregnant, with her third child, and she had been waiting to tell me in hopes that she could share the news after I had good news of my own. (We had joked about having simultaneous pregnancies back when she was trying for her second kid and we were just starting to try for our first.)
I was so happy to hear that I would be getting another amazing kid in my family, a nephew for me and brother for my two perfect nieces. And I burst into tears nonetheless — because I felt terrible that my cousin was upset about telling me; because I was so touched that she knew this would be hard for me; because I didn’t want her to worry about such joyful news being hard for me; because I felt guilty; because she felt guilty; because I was envious; because I was happy.
I know that this essay itself could cause someone else pain by comparison — someone who doesn’t have the financial resources to pursue IVF, or who has done it and gotten fewer embryos, or who doesn’t have a supportive partner. We are always ahead of some people and behind others.
Access to fertility treatment is not equitable, and we should all care about that.
If you’re facing infertility, your options vary widely depending on where you live, your economic status, access to community resources, inherent bias in the medical industry, and so much more. Right now, fertility treatment is often a privilege; it should be a right.
Black and Latinx women are more likely to experience infertility than white women and less likely to get the treatment they need. And when they do get treatment, their outcomes are less favorable.
Here are just a few ways we can push for change collectively on this front:
- Ask your employer if your health insurance policy covers fertility treatment, even if you don’t think you’ll need it personally. If that coverage is absent or limited, tell HR it’s something you’d like to see in the future. It’s a recruiting issue — a robust benefits package will entice more and better candidates. Most companies reevaluate their insurance policies every year and have the option to change or add coverage.
- If you live in one of the 31 states that do not mandate fertility treatment coverage, lobby your state representatives to push legislation to change that. Research local and state candidates on their positions on this issue before you vote. Here’s a great guide to see what’s covered in your state.
- Donate to and advocate for organizations and people working to increase equitable access to fertility treatment. Here’s a great article with four organizations to check out, including the Black Mamas Matter Alliance, which we support monthly.
- Fight the stigma. For some people, that means sharing their personal experience, but no one is obligated to do that. We can all fight the stigma of infertility simply by not assuming that it’s easy for everyone to have children (or, ahem, that everyone wants children) and acting accordingly. No more “jokes” to childless couples about how they better get started on grandchildren. No more concerned looks paired with analogies about clocks. No more “when will you have another?”
Infertility is something you have, not something you are.
I’d love it if we could stop referring to people as “infertile.” We don’t call people with cancer “cellularly incompetent.” More importantly, I want you to know that I’m more than this diagnosis. Infertility treatment can be grueling and all-consuming, but it’s not the defining part of my life or my personality.
After I recovered from the surgery to take my tubes out, my husband and I decided to delay the start of IVF so that we could take a trip to Italy with my family. That slight delay became much longer than we anticipated thanks to the COVID-19 pandemic, but even knowing that, I wouldn’t have changed our decision. We badly needed to escape our everyday life, to get away from the tests and the pain and the doctors and remind ourselves that there’s an incredible world to explore and a lot of pasta to eat.
Trevi Fountain in Rome, where we threw in a coin and wished for a successful round of IVF when we got back home; me and my husband on a bridge over the Tiber River; pasta so good you could cry.
