The Sad Moms Club

32. Infertility: Endometriosis, IUI, and IVF

• Joni Lybbert • Season 2 • Episode 32

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I know this is a click-bait episode title, but there is a reason for it. My hope is that you Snoopy Sarah's and Nosy Natalie's (no judgment, I am also Ms. Snoopy) will be curious enough to give the episode a listen. And either feel validated if you're going through something similar or learn how to support a loved one. 

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Follow along on The Sad Moms Club's Instagram: @the.sad.moms.club

Follow along on The Sad Moms Club's Instagram: @the.sad.moms.club

Joni:

Hi, everyone. Welcome back to the sad moms club. After a little bit of a break the last couple of months. Thanks for coming back. So I'm going to keep this intro really short. This episode is all about why I, why my husband and I don't have children which we'll get into shortly, just two quick housekeeping items. You might notice that there's a new intro song. I asked someone on. The internet that I don't know. It's called. I'm saying it wrong. Fiver Fiverr. It looks like it rhymes with river, with an F and then there's two hours at the end. Anyways, I asked someone to create an intro specific to my podcast, and I think it's really fun and a lot more catchy. I recognize that the song is. Upbeat compared to what we talk about, but that was very much on purpose. And then also I want to start releasing these every other week. It's something that will help me make this a lot more sustainable moving forward. So I'll release this episode this week and then you'll hear back in a couple of weeks. Okay. Let's get started.

Welcome to the Sad Moms Club. Welcome to the Sad Moms Club. Welcome to the Sad Moms Club.

Samson Q2U Microphone-1:

I've been thinking about doing this episode for a long time. And. I don't really know how it's going to go, but I'm going to kind of treat this like, I guess a journal. Slash talking to a friend. Oh, I don't know why I feel so nervous. I should start by saying. If you are a current patient of mine. I'm going to be disclosing a lot of information about myself which could possibly impact what you feel comfortable sharing with me. And could impact our therapeutic relationship. So if you're a patient of mine I recommend pushing pause and listening to this when we're no longer working together. Um, Ultimately, that's your choice. But I just want to give you a heads up because in therapy, the goal is for us to talk about you and not to talk about me.

Joni:

And by knowing more about me, you might start to feel self-conscious about sharing certain experiences or, or thoughts. That's all. I'm going to say about it.

Samson Q2U Microphone-1:

Gosh, I feel so nervous. OKay. So the point of this episode is to talk about why we don't have children. It's definitely the most click baity episode title I've ever done.

Joni:

I chose it because I think it's easy to be numb to the word and fertility.

Samson Q2U Microphone-1:

Maybe that's not true for you. But. Even for me as someone who is going through it, when I see other people. Go through it.

Joni:

It's easy for me to avoid fully investing in the emotion of it. That'd be like, yeah, everyone. Not everyone, but it feels like so many people have. Infertility.

Samson Q2U Microphone-1:

I just, I wanted. To give people the opportunity who maybe would glance over this episode to I guess learn. Something from the experience I've had. It is. Certainly not unique. One in six couples struggle with infertility. So it's super common. That's according to the world health organization, and that number came out this year. They used to say one in eight couples.

Joni:

So it's really frequent, but that doesn't take away from the heartache of it. Similarly, lots of people have miscarriages. 10% of people's children end up in the NICU. everyone loses their parents one day if they live to see them pass away. But that doesn't mean it's not really, really hard. Um, and so. One of my goals is to just. Explain why it's so hard. Kind of get to the emotion of it. I want to read a quote to you guys from the retrievals. I don't know if you've heard of the retrievals, it was done by the same people who did serial, podcast that came out years ago. That was really, really good. Their travels discusses. Women who went through egg retrievals. So that's a part of the IVF process. And they were not administered fentanyl because one of the nurses was taking the fentanyl. So they talk about many things like addiction and fertility treatments and the experience of infertility. And why women would still go through with an egg retrieval when they were in a lot of pain. And I just wanted to read a part of it because. I feel like it really explained my experience. In a simple way. That I have not been able to. Put so. Concisely. What are the central tensions, a fertility treatment basically since its inception has been okay. Is this a patriarchal system or a feminist one on the one hand you have a top-down system that frankly was designed by men. There's tons of drugs and doctors telling you what to do with your body. On the other hand, being able to decide when and how to have a baby and the possibilities that fertility medicine opens up for patients in all kinds of situations. This is also reproductive freedom. If you have access to it. Being a fertility patient is both a privilege and a trial. It involves both obedience and agency, both submission and control. There are a lot of polarities here, a lot of ambivalence. And the end. This is my favorite part. The central ambivalence for some of the patients it's a simple and powerful one. Anger and gratitude. Anger and gratitude are. Two of the primary emotions I felt throughout. This experience. They're weaved throughout the last couple years of my life. Grateful that we can. Do it, and we have this technology. Grateful that we're able to afford it. Grateful that there's hope still. Anger. At the injustice and the unfairness of the situation, anger at the pain. Physical emotional. So I guess. With that. I want to say, whether you haven't fertility or not. If you know someone who struggles with infertility, I'm going to talk a little bit about my experience. buT also I want to talk a little bit about how to support people who are going through it. Because I have found some people in my life are really good at it. And I just think it's helpful to learn from people who I think are doing it well. At least for me. So first I'll talk about my experience and then I'll talk more about things I've learned that have been helpful for me. People who have been helpful to me, some things that. Weren't helpful. At all. It's a hard thing to talk about because there is just so much information and education. Around the fertility experience that it's just like, People typically, including me, don't really get it and don't invest In the time to understand it, unless they're going through it personally. I'm going to try to be more brief on that. I'm going to try not to get too in the weeds about The information. But just recognize it's hard to talk about it without using words that are very specific to the fertility world. So I'll do my best. But the real reason I wanted to share it, because I think. Our fertility experience sounds very much like other peoples is more to talk about the emotional experience. Around it. And processing out loud. What it has been like for me, because I know throughout these last couple of years, it's been so helpful to have people to talk about it who really get it, and he can understand the experience that I'm. Having, and that are kind of along the same road. Yeah. Infertility. It is definitely not something I thought. We would struggle with. Mostly because my mother was a fertile Myrtle. But. I did have this feeling.

Samson Q2U Microphone-2:

As we started trying to conceive that. We could. Struggle with infertility. Let me go back. My husband and I got married in August of 2021. And I felt pretty immediately, like we should start having children, but I did not want to start having children. I was like, this would be really hard. I'm in the middle of a graduate program.

Joni:

We were both really strapped for time. My husband was in the middle of his training. So he could only be physically present so often. And it weighed on me for a few months. Just about the first six months of our marriage. And then. In January of 2022, I said,

Samson Q2U Microphone-2:

Trevor. I think. I think we should start trying to have children. Now I will say that my husband always. He loves kids. Way more than I do. I like adults. Here's a reason. I don't work with children. I like talking to adults. But he loves kids. He has a great relationship with his. Nieces and ultimately his relationship with his nieces then made. Me realize, like I did want children. If I could have children with somebody who was going to be. in it with me and it wasn't going to feel like most of my responsibility, it was going to feel like a true partnership. My husband was like, we can have kids whenever you're ready. I would like to have kids, but I recognize that this. It does not really fall on me like this, the brunt of the that's probably not the best word, but it will affect my life far more than it would affect his. And so he's like, yeah, whenever you're ready. Like we can start soon. We can start later. We obviously had discussed having children before that, so we both knew we wanted kids. We just didn't know when. So January of 2022, it started chatting with having children. I'm way to open up a book. So I think it was a few weeks later, I got together with some of my girlfriends. We could go up to a cabin in Sundance. Every winter for just a weekend. All we do is talk. We just talk in different places. So we talked in the cabin. We've started going to One of the restaurants at Sundance. What is it called? There's the F. Forest. It's not the tree room. That's going to bother me. Let me look it up. Oh, the Foundry. The Foundry girl. Okay. So yeah, so we certainly go the founder girl, we chat there. There's a hot tub at the cabin. We chat in the hot tub. Sometimes we go on a walk, we chat there. Basically the whole weekend is talking and catching up with each other. My husband and I had decided that we wanted to have children before we could start trying though. He. Has a niece with cystic fibrosis. And so we wanted to see if he was a carrier. And if I was a carrier. So we were doing some genetic testing and it was going to be awhile until we found out.

Joni:

Because if we both carry the CF gene, then we would likely do IVF and select for an embryo without two copies of the CF gene. Anyways, I bring that up because. At the time I was at the cabin. I knew we were going to start trying, but we hadn't started yet. And I remember this very specifically, there's a group of about 10 of us that go to this cabin every year. And two of them had experienced infertility. At least at this point in the story, now there's actually another person who's in the midst of an infertility journey. And so. I said. Hey guys, guess what? We're going to start trying soon. I'm really excited about it. I'm also scared. But I'm nervous. Like what if I haven't fertility?

Samson Q2U Microphone-3:

Like I even just get chills thinking about that again. It was like, I definitely felt this might be something we struggle with. And I don't know why. I Don't know. I don't know why I felt like it could happen, but. I remember the first time we tried and I didn't become pregnant. I was like pretty devastated. And I was like, oh my gosh, am I going to feel like this? For a long time. And I did. I was right. I didn't feel like it for a long time. So that's the first I remember thinking about infertility and the two friends that were there that had already. Gone through a lot of. What I was looking forward to in the future. Unknowingly.

Joni:

I feel like I remember them being very matter of fact about it. Like, yeah. That would really suck. And if you're in fertile, then these are the types of things you'll do. And you'll figure it out and I hope it doesn't happen. But if it does, we'll be here for you.

Samson Q2U Microphone-3:

And I guess that's one of the first things that I felt like it was the most helpful in that first year of trying was having these two friends who had gone through infertility. Be there for me and talk to me About the whole experience. And when I was just really. Devastated. Some months more than others. I could turn to them and just say Hey, this is like really hard. And then they would also be good about checking in on me and say like, Hey, how's it going? How are you feeling? I'll talk more about that. But yeah, having friends who've gone through, it was really helpful. So we tried for a year as the story goes, actually a few months after we started trying is when I decided I needed to move back to Utah for school. And yet we still were able to try every month for the year.

Joni:

Just as a side note, the recommendation is to, if you are in a heterosexual relationship. If you're under 35, try for a year, if you're over 35, you can try for six months and come in. And if you have irregular periods, Or something like, obviously wrong just from the get-go There's no need to try on your own. It's better to just meet with a reproductive endocrinologist from the beginning because likely there's something going on. If you're not having regular periods. Um, obviously, if you're not in heterosexual sexual relationship, you're going to need a sperm donation or egg donation, a surrogate. So you would start Going to a fertility center, as soon as you are ready to have children. So I was 30 when we started trying, so we tried for a year before meeting with Utah fertility center.

Samson Q2U Microphone-3:

and. I was more okay with it at that point. Cause I'm like if we don't get pregnant. That would be difficult to be pregnant away from each other. And also I really wanted to go to Europe the summer after I graduated. And so I was like well, it's going to be like the worst thing ever if. If nothing happened. So there was like a little bit more acceptance towards the end of that year. Cause it was looking like we're probably going to have to go see Like a reproductive endocrinologist, which is Uh, fertility physician. YEah, so we tried for a year, never one positive pregnancy test. Took a lot. I haven't taken any in a long time now. Cause they're too sad. I scheduled an appointment a couple of months in advance for February to start the workup, to see what was going on. we met with Utah fertility center, which is a place a lot of people I know, go. Dr. Conway was recommended by one of these friends that had already gone through it, actually a few different people had recommended her, although there's a lot that come very highly recommended. Actually, I think like at this point, everyone, there is a really great choice.

Joni:

We made an appointment with a nurse practitioner to go through our history, do an initial ultrasound and set up. A few different tests to see what was going on. And then a month later we met with Dr. Conway to go over the results. And we found out through this testing that I likely have endometriosis my husband has poor morphology of his sperm. I should find what it actually says on the report, because it's very funny. Says semen analysis. Two out of 200 normal. Morphologies observed most with a morphous heads and bent necks.

Samson Q2U Microphone-3:

anyWays. So we just joked that.

Joni:

his sperm are just swimming in circles or limping along To try to get to the egg

Samson Q2U Microphone-3:

so we knew that we knew that I probably had endometriosis, that's an actual, like a surgical diagnosis. So you have to have laparoscopic surgery for them to look and visualize and take biopsies of potential endometrial tissue, which they typically don't recommend surgery, unless the pain is that unbearable that they need to remove. Some of the endometrial tissue. also found that I had a polyp. In my uterus, which can impact implantation. Um, Polyps, just like a benign little growth. So found all that out. Dr. Conway was great. That's actually the time she was on my podcast, like about a year ago. So I guess nine months, 8, 9, 10 months ago. So if you want to listen to her you can, you had no clue that I was her patient, unless I gave something away.

Joni:

Anyways. She said that I need to get the polyp removed and then we could try IUI, which I'll explain in a second. I ended up getting the polyp removed in April, which was very stressful. I was presenting my doctor of nursing practice projects. So this podcast and the impact of it that week. Uh, and it just lined up. Poorly, you have to do it on a certain time during your cycle. And that was when they could do it. And that was when I was presenting my project.

Samson Q2U Microphone-3:

So we got the polyp removed. That was very stressful. We met with Dr. Coleman. And one more time, she's like, all right do you wanna start our UI now? And we said, no, because we don't have insurance for the next couple months. And we were going to Europe, which is actually just the best time, it was really nice to have from may to July. Just not really think about fertility at all. We probably know it's not going to happen. And I just didn't think about it for the first time in. In a while. It was really nice. the last week we were there, we were in Greece, like one of our favorite places, probably our favorite place, the whole trip. And I started seeing like a lot more kids. Someone in our family had a child and that ended up being really hard for me. Cause we were trying around the same time. And I was just really jealous. Like even though I love my life and I loved that we were in Europe and I loved that I graduated and I didn't have to worry about being sick. And like all of these things, it was really hard. And it's weird to have some things so precious and perfect and, Not this little child's fault at all. Wanting to avoid. Avoid the infant and not want to be around them because it was just so hard. So August was rough. We didn't have insurance for a month, so we still couldn't go to the fertility center. But I was just thinking about it constantly.

Joni:

Partially because I was in a lot of pain since they removed that polyp in April. Um, they do a hysteroscopy with polypectomy. Basically endometriosis for me just means a lot of pain it just gets really intense and uncomfortable and painful during my period. And my period right after Europe was pretty bad. In the beginning of August I was drying my hair and I just started getting really hot. And then I started feeling a lot of pain. It was very strange. Usually somehow he's never around, but he was there that time and I was literally writhing on the wood floor. Cause I couldn't get up. and he said, I don't really know how to help you. How can I help you? And I was like put a fan on me to help me. Cool down, go get some ibuprofen, please. And I was crying and a mess and just reminded this is so. So unfair. I hate that. Not only, I'm not able to have a child when I want to, but I also am reminded every month with pain. That I can't have a child. Oh yeah, you didn't get pregnant again. And now here's something that's going to make you throw up or put you in bed for a few hours.

Samson Q2U Microphone-3:

That was pretty terrible. So September came around, we finally had insurance. We started meeting with them. We decided we were going to do an IUI.

Joni:

Because with Trevor's poor morphology, it could potentially overcome that. Barrier.

Samson Q2U Microphone-3:

And it was like the first time I started feeling like a little bit of hope in a long time.

Joni:

Just to be clear at this point, I'm talking about this last year, 2023. So. When we decided we were going to do IUI. This is for September, just a few months ago. And something that helped a lot during that time was this Disney trip I took with some of my girlfriends. Just so nice to truly be away from all of life's problems. I'm going on these rides that just helped me like, feel really in my body. It's like this mindfulness thing for me. Which maybe that's not true for a lot of people, but I do feel very mindful at Disney and I went to Disney once when I was 18. The second time I went was Christmas. Last year. So since then, I've gone back and it is so helpful for me to just let go of things. Even if I still talk about them. I don't feel them in my body as much. I'm a lot more present there because it's just so fun. Yeah. It's hard to ignore. All of your senses being engaged, it smells amazing. And then you're eating the delicious food and you're connecting with people. It really was a very healing trip for me. So we went to Disney. I started my period and it was late. One of my friends who has infertility, she said the nicest thing your body can do for you. If it's not pregnant, it start your period on time. And of course it didn't while I was at Disney, it was like three or four days late. And I was like, oh my gosh, does that mean I'm pregnant? And then I started my period. As we were flying back home and I was depressed and tearful about it. But for those three days at Disney, it was just this beautiful, magical break. I think the other reason was I had an ultrasound in September because the pain hadn't really relieved, since my hysteroscopy in April. And so I had a trans vaginal ultrasound and they're like, yeah, there's nothing like obvious, like you have these huge endometriomas, but it does look like you're about to ovulate. You guys should try right now. This would be like the time to try it. So we did. And so then I was late during Disney. And then I came home and I think it was one of the first times too that my husband had been a little bit more hopeful. Like, Oh, maybe we've just stuck to timing this for. The last year and a half. So that was pretty hard. And then we're like, okay, but we're starting IUI. Maybe this will work. Iowa has a much lower chance of working than IVF and. I don't know how much to explain about IUI, but I'm going to try to put it simply. I've heard it explained as you're taking your best players and putting them further down the field. They still have to make the touchdown, but they're closer to the goal, the goal being the egg, the players being the sperm. So in IUI, they time my cycle, so that they're inseminating me at the exact time that I opulate. And so that the egg and the sperm have the optimal chance to meet. Additionally, They give you medication that helps you ovulate more than one egg increasing your chance of becoming pregnant because there's more than one. Egg that's being released from the ovary. So I obviated three eggs. This also increases the chance of multiples with IUI. IUI is much lower cost it's lower intervention, which also means it doesn't work as well as IVF does. It still works. Lots of people get pregnant with IUI, but it's not. Nearly as high of a chance as IVF. So the regular chance of becoming pregnant, if you didn't have infertility is 20% every month. I've heard different numbers for IUI. The highest I think I've heard is like 15 to 20% chance of getting pregnant with IUI. Each time you do it. Our physician said 12 to 15% based on what's going on with us, but then the day of the intrauterine insemination or the IUI, I was watching a video by this great reproductive endocrinologist. Who's all about research and education, and I'll definitely link her stuff because I've learned so, so, so much from her. I was listening to Dr. Natalie Crawford's episode about endometriosis, and I don't remember exactly what she said, but what I got from it was IUI. is much less likely to work if your endometriosis is severe. Now I've never had my endometriosis stage because you can't do that without surgery. But as I was looking, into what higher staging means, it fit well with what they were seeing on ultrasound. So I went to this IUI, my very first IUI, my very first real fertility treatment with. Hopelessness feeling like there's no way this is going to work. And we just spent money on this for no reason. And I felt hope up until this very moment. And then the actual IUI hurt me really bad, which of course it did because everything hurts me. The nurse practitioner who was doing the procedure, said like this shouldn't hurt and my husband was in the room. And he thought and told me later, like it will hurt her because everything hurts her and like obviously a loving and understanding way, not a complaining way. So I started crying during the procedure because it hurt. And then I continued crying after the procedure because I felt hopeless. And why did we even do this? This isn't going to work. And then two weeks later we found out it didn't work. I get these really interesting symptoms right before my period starts.

Samson Q2U Microphone-3:

One of them being a nosebleed and I started having a nosebleed like the day before I started my period. So I told my husband I don't think it worked like I had a nosebleed today. And then do a blood pregnancy test to see.

Joni:

Because you give yourself an HCG shot to cause you to ovulate at a very specific time. So they can time the intrauterine insemination. Exactly. When the egg is available to be inseminated. So, if you take a pregnancy test too early, you might get a false positive, because the HCG is still in your system. From that shot 36 hours prior.

Samson Q2U Microphone-3:

So you don't take pregnancy tests, you just do a blood pregnancy test. I know people do it. I've had enough. Negatives I've had enough heartbreak that I'm not interested in. And looking at this. One more time and being disappointed, like it was better to be called and have some stranger telling me I'm not pregnant. So at that point, when I found out more information about endometriosis and IUI. I was like, I don't think I want to keep doing this. I want to just skip to IVF. So we skipped to IVF. So this was like, I think it was mid October when, when DIU I didn't work. We luckily had a meeting with our reproductive endocrinologist on November 2nd and said, Hey, we just want to move on.

Joni:

Typically they recommend doing three cycles of IUI before moving on to IVF because it is a much cheaper option. But she was like, sounds good. Let's move on. She explained the IVF process. The actual definition of IVF is. That the egg is fertilized by the sperm outside of the body. Like an, a Petri dish or. Test tube is traditionally what people say, like a test tube, baby. But I see IVF as more of an umbrella term for two processes that you have to go through the first process. Is the egg retrieval and the second process is the frozen embryo transfer. And in between those two is when the in vitro fertilization or the actual fertilization egg meets sperm they grow into embryos, they get frozen. happens between egg retrieval and frozen embryo transfer, or it could be a fresh embryo transfer that is not important. For simplicity sake, there are two. Parts of IVF. There's the egg retrieval. And then there's the embryo transfer. I'll try to briefly explain both. Parts of it. So the first. Cycle you're doing an egg retrieval. I'm going to use Natalie Crawford's analogy to explain it because I found it very helpful. Imagine that there's a vault inside of your ovary and every month a group or cohort of eggs come out of the vault. This happens, whether you're doing IVF or not. If you're a female under 35 who doesn't have DCOS, blah, blah, blah. You have 15 to 20 eggs. Or you'll also hear the word follicles come out of the vault. So the exits inside of a fluid filled structure called a follicle. The point of IVF is to get multiple eggs, multiple follicles to grow, so instead of only having one egg retrieved, they're able to retrieve multiple mature eggs. You're doing shots to get them to grow. You do shots to prevent them from ovulating too early. Because then that's a waste of time and money. And then after all of those shots and a lot of appointments and monitoring and blood draws, they do the egg retrieval where they put you under moderate sedation, and they do like a trans vaginal ultrasound. That's kind of what it looks like, but they have a needle on the end of it and the needle goes. Through the vaginal wall where the ovary sets and then they poke the follicle, which is that fluid filled structure, the exits inside. And then they withdraw all the fluid from those follicles. That's the first part. That's just the egg retrieval. Once they've retrieved those eggs and they'll take sperm and they have them meet inside of a Petri dish. You can have them just fertilize the way they normally would do in the natural environment. Or you can do something called ICSI. Intracytoplasmic sperm. Injection where they take a sperm in the needle, a really like a good looking one and they insert it in the ag, they inject it.

Samson Q2U Microphone-3:

So we opted for ICSI because of Trevor's poorer sperm morphology.

Joni:

And then the next day they look at the Petri dish and see how many of those. Eggs became fertilized. At that point, they let them sit in the incubator for five days. And they can go up to like six days. They watch them to see if they become blastocyst, which is a group of around a hundred cells. Of an embryo that then can go on to become a baby. We. Opted to genetically test our embryos so that we're not transferring an embryo that would never be compatible with life anyways,

Samson Q2U Microphone-3:

Because I honestly, I'm trying to avoid as much heartbreak as possible.

Joni:

So you can do genetic testing. Of course, that costs more money. Just like ECC cost more money, any choice you have along the way it's like, do you have the funds to pay for it? Is this important to you? Is this important to what's going on with your own personal infertility? So we chose to do the genetic testing and in the meantime, all of your embryos are frozen while you wait for that genetic information to come back. The second half of IVF is the. Embryo transfer typically frozen embryo transfer. And that's where they're prepping the uterus for for the embryo to implant. That's also involves medication shots, timing, it's not as intense as the egg retrieval. When they actually transfer the embryo. It's something I can be awake for. It's exactly like an intrauterine insemination where they take the embryo into a catheter and then they just place it inside the uterus. Okay. So that's the two halves, egg retrieval. Embryo transfer. We started the egg retrieval process the day after Thanksgiving. And that was a little bit after I decided to pause the podcast. I was just trying to decrease my stress in any way possible, because. The egg retrieval took up so much of my. Brain. Power and brain capacity. I was forgetting things. I usually don't forget appointments. I have a pretty good memory for things, but I was forgetting things left and right. And I was like, okay, I need to stop the podcast. I cut down on the patients I was taking. I didn't start seeing patients until later on in the day. Luckily I have a really great, awesome boss and flexible job where I can create my own schedule. So we're currently in between these two halves of the IVF process. We've completed the Agra. Retrieval. And we're going to do the embryo transfer soon.

Samson Q2U Microphone-3:

We found out recently that we have some embryos we're really pleased and happy that we have them that I don't have to do another egg retrieval anytime soon, because the recovery was rough for me. When they called me and told me that we had six embryos, that they were going to genetically test, we ended up getting four, which is wonderful that was like the first time I cried of Hope. And relief. And oh my gosh, I think this is really going to happen for us. I think we're actually going to get to have a child. Um, Oh, so happy. And then knowing that we got four. That are genetically normal was also just such a huge relief for me. It was definitely like once the eggs were like out of me, I started feeling a lot more peace. Yeah, that's where we're at right now. We're gonna do an embryo transfer soon where they take the embryo and they put it in my uterus and hopefully it implants and becomes a little human and I become pregnant. And we'll find out Two years. To the month. Whether, the first embryo transfer worked. And if it doesn't, then we'll do it again. And again. And again, I still feel like that nervousness and that tenseness, I just don't know if anyone's still here listening. Kudos because it is so much stuff to learn.

Joni:

I guess some things I wanted to talk about more than what we experienced, because like I said earlier, it's probably very similar to what a lot of other people experienced. And honestly, ours is, and even as. As hard as. many other people's infertility journey. There's things I've learned about myself and infertility and how to support someone through it that I wanted to share.

Samson Q2U Microphone-3:

I think one reason why I really wanted to do this is because I have insecurity around not having children and choosing to work with moms. I wish I had kids. And I get asked a lot. Do you have children? Not really for my patients as much, but more from colleagues, people that are within the field, they assume I have kids because I work in maternal mental health. And so then I have to say no, like we can't have children or I just say, no, I don't have any kids. And they're always like, oh, I'm so surprised. Like, why are you even here? That's not what they say in that way, but that is how I feel like, why are you here? If you don't. Have children. And. The answer is that I'm here for the moms. I want to support women in finding. Themselves and. Things that they love. It feels the most feminist thing. I've ever done supporting women. HElping them find out. Who they want to be. Outside of motherhood, because a lot of times that is why they come is because they're like, I thought I was going to love this and I don't, or I do love this child so much, but I don't feel fulfilled or I don't feel good. And this is really hard. So I think that's one reason why I've thought about doing this for so long. But also, I get the question a lot. Is it hard for you to work with patients who have children and I'm like, it really is not. It is not hard. Because context helps me so much. What's hard for me is seeing pregnancy announcements on social media. Because I don't know what's going on with them. I don't know if they had in fertility. I don't know how long they were trying. I don't know. Anything. What's hard for me is when I see people say we were really struggling to get pregnant. And then they got pregnant in six months and I'm like, that is so hard. It is so hard. But I can say six months compared to two years and thousands of dollars and a lot of pain in many procedures. It just feels like a little like, well, you don't really know. And that is That is very hard for me to say. It feels very heartless because of course I recognize I don't need to compare suffering. Like people have it so much worse than me. Like I have a friend who's doing egg retrievals right now and they're$75,000 in and they only have two embryos after two Agra tribals. And I'm like, that is worse. If I just look at it objectively, they have it worse than I do.

Joni:

It's also weird because. For some people having a baby, an unplanned pregnancy. Is their challenge. I guess I'm just saying life is very strange and something that would be the most exciting thing for me being able to get pregnant. Is disastrous for someone else. And. Can fundamentally change their life in a way that they were not hoping for. So I, I just, I guess I just recognized that. I know, I don't know the whole story. I know, I don't know it. And yet these are my thoughts and I'm just trying to be really honest with. What I think. And it's weird because the very thing I want is what they have. And by them not having a baby, doesn't. Give me the ability to become pregnant. It's not zero sum, but I just, I'm just jealous. I'm just jealous of. That situation, even though I don't know the situation.

Samson Q2U Microphone-3:

So I know it's not fair, but one of my friends who's also had, infertility's like, yeah, you think really horrible things. Sometimes when you're going through this. And I do. Whether they struggled for six months or eight months Whether they're saying they're struggling online or they're like, oh yeah. Like I get what you're going through. Like I don't, but I do because we struggle to get pregnant. I'm like, I get it that you do, but you also don't because you don't have to do. All of this other stuff, all this emotional. Painful physical work. That truly is just the woman and not the other partner. Oh, So that's really hard for me, but what is not hard for me are patients. When they come to me saying they're struggling with their kid or they're trying to get pregnant. I know the context of their life and it is not hard for me. I guess if I do have patients that decided to keep listening. I promise you, it never bothered me one time. And I love seeing your little kiddos and I just don't struggle and I don't know why I'm able to separate it. The only explanation I can think of is context is so helpful for me. One thing that's really hard with infertility. Is that. If you are in a heterosexual relationship. You. As the woman. Essentially feel like you're doing it by yourself. And it's So hard to navigate. Because. Part of me was angry. At my husband a lot. Because he. Didn't have to do anything. He didn't even have to be there. Oh, it's just so deeply unfair. And of course that's even just to become pregnant, then you're pregnant and then you potentially, if you choose to or breastfeeding, And just feels like it doesn't end. And then I know people will say but you get the benefits of carrying the pregnancy as well. And like the connection with baby I'm like, of course, but right now I have nothing like that. It's just pain and heartache. And I've rollercoaster of emotions and stress about Is this my fault. Am I putting things in my body that. Is ruining the chance of having a child like. It is so hard. Me being so angry. That I was having to do this and he wasn't. There was one time I went to a PSI support group for fertility challenges. That's what it's called. Fertility challenges. If you're unaware of PSI, I've talked about it a lot. But if you're new here, welcome. Hi. My name is Johnny. But PSI stands for postpartum support international and they have tons of free support groups for truly anybody that is on any

Joni:

part of tHis parenthood spectrum. They had the support group that I chose to go to. I think it was in September. I didn't even talk, which is kind of rare for me. I think it was cause I was driving. I was just listening. And one of the girls said like, it is so hard. For me to not feel resentment towards my partner.

Samson Q2U Microphone-3:

A lot of the other women agreed.

Joni:

Which was incredibly validating for me. I just wanted to hear other women say like this sucks. This system is so unfair. This biological system that we're born into. This is dumb. I heard the comparison on Instagram, imagine. You are doing your group project and your partner brings the markers and then you create the project. And you present the project all by yourself, but you both get the good grade. were describing like pregnancy and birth, but definitely applies to in fertility as well. Back to the support group, then people. Well said.

Samson Q2U Microphone-3:

I've been trying for three years, I've been trying for five years, I've had eight failed embryo transfers. And I was just like, oh my gosh. I hope and pray. This does not get worse. I hope I'm not in their shoes.

Joni:

One of the members of the support group. He said that in their partnership. She has the partner do all the finances because that's something that they can do. So I took that home with me and brought it up with my husband. And, and since then he's taken on paying off the bills for all of our fertility treatment. Something else I want to say about the support group is. Like I said, in the beginning, the most helpful thing for me has been talking to people who've truly been through it. Whether that's in a support group. For me, it's really nice to have a real friend, like a real human being that I can text and be like, Hey. I got this result. And they actually understand the. Weight of that result and what that really means.

Samson Q2U Microphone-3:

At one point they said, they're going to have to cancel my egg retrieval, not the actual retrieval, but canceled the cycle. I was going to have to call back next month. And I told my friends that I had just found out um, hour before I went to dinner with them. And the outrage.

Joni:

Was so validating. For them to understand. what another month means. Was just what I needed. And I know if you zoom out a month is not that long, but when you're waiting every month and it feels like you're constantly waiting for something you're waiting for your period to start, you're waiting for your next ultrasound, your next blood draw. For a call from the fertility center. Another month feels like. Much much longer. And so someone being able to fully understand the entirety of the experience and know the vocab, it is truly an entire education and your reproductive system and someone who doesn't know it cannot commiserate with you.

Samson Q2U Microphone-3:

And I have educated so many people, I feel like I've taught a lot about how this all works to people and then my good friends are able to support me because they've learned enough to be able to ask me like, oh, did you find out about the genetic testing? How many embryos did you have? How did the egg retrieval go? They can use a vocabulary to be able to check in on me, but it's not that you have to have gone through it to do that, but it takes some dedication to learning the lingo, to be able to support someone through it.

Joni:

I'm really grateful to have some friends and family members who have put in the time and effort to learn so they can talk to me about it. My dad asked me when I first told him that we were struggling to become pregnant. He's like, how can I best support you in this? And I said, you can learn. To know what I'm talking about. And him and his wife have really taken that to heart. Which has been. Quite meaningful for me. And then I am especially grateful for my friends who have gone through it personally, because they get it. I'll say if you're a loved one. Of someone who has infertility. One of the most supportive things you can do is actually try to learn about the process. Because having to explain it every time. Is fine. And I'm like happy to do it, but it is exhausting. If they're not even really trying, you can tell when people like, oh, I, I watched the video, you sent me. So I do understand it. Or I'm remembering what you taught me last time. But when people are just kind of asking the same questions, You realize like, oh, you, you care, but you don't care enough to invest the time into it. And not every person is that kind of friend. So it's not like you have to do that for every infertile person, you know, but if you're really close to someone. It is so helpful to learn about the whole process so that you can really be there with them. Every step of the way, if they want you there. I wanted to bring up a resource: the Utah and fertility resource center, or U I R C, that was created by Camille Hawkins. URC offers free support groups, which could be a really great option if you're here in Utah. And if you're someone who doesn't feel like they know anybody who's going through it, or you don't want to talk about it with your friends. Maybe you're more of a private person,

Samson Q2U Microphone-3:

but could share it in a more anonymous support group setting. The PSI support group was great for that because I didn't know anybody in there as people from like California, from New Jersey, like all over the country. sO I felt comfortable going there and. Being anonymous and just listening to other women with the same experiences as me.

Joni:

Another thing I've learned. Is the importance of advocating for yourself. Advocate advocate advocate. It's so essential and I've had to do it so many times just in my healthcare experience in general, but specifically throughout infertility. I think everybody who works within the infertility field wants to give you the very best care. Um, but they are helping so many people. Go through the IUI process, the IVF process. They may not know your case specifically. So, for example, like I mentioned a few minutes ago when they wanted to cancel my. Cycle for my egg retrieval. They always do a baseline ultrasound at the beginning where they look at your lining. And it looks at your ovaries to see if there's follicles there. And just as a reminder, within the follicles are the eggs. And so they're seeing how many follicles are available to grow throughout your. Egg retrieval cycle. And that was scheduled for Friday after Thanksgiving. On Saturday, they called and said, Hey, unfortunately, we're going to have to cancel your cycle and you have to call back next month. and I was like, whoa, wait, what? Why. And she said, oh, your endometrial lining is too thick. And I said, oh, okay. Like what was it supposed to be? And she said below seven millimeters. And I'm like, well, that's probably where it is now because when we did the baseline, I hadn't started my period yet. that's why I think it was so thick. I started my period, the night of that baseline and she was like, oh, So, I guess typically they don't do a baseline ultrasound until you've called in with your day, one of your period, but mine was a little bit different. And so they wanted me to just come in on a specific day anyway. So they didn't know my specific protocol. That wasn't charted that I hadn't started my period yet, even though I did let them know. So I had to go back the next morning on Sunday morning to do another repeat baseline ultrasound.

Samson Q2U Microphone-3:

And then from there we were able to move forward, but had I not pushed back? Had I not said, oh, like I have started my period. If I hadn't asked questions, they would have just canceled the cycle. Which would have been. Like I said it would be fine, but it would have sucked. Because another month of waiting sucks and I had figured out my whole work schedule around it. And my partner was going to be out of town the next month. So it wasn't really gonna work for me in that way, like he couldn't be there to support me. And I obviously wanted him there for that. If you feel like there's something wrong, just ask more questions and advocate.

Joni:

And I guess in combination with advocating for yourself, you also have to educate yourself because in order to ask informed questions, You have to know what they're talking about and they do use that unique lingo. And so if you don't know what they're talking about, ask questions or do research outside of these appointments To better. I understand the whole process. Natalie Crawford. the reproductive endocrinologist has both YouTube videos and podcasts that I've learned. So, so much from and have been helpful multiple times throughout this process. So can't overstate, how important it is to educate in order to advocate for yourself appropriately, because. You might be advocating for yourself poorly because you aren't educated.

Samson Q2U Microphone-3:

Be the difficult patient, be the squeaky wheel. Cause it does get the grease. I've had to advocate for myself a lot and like I said, I don't think that person was trying to do a bad job. I was trying to be mean was anything. They were just functioning off of bad information. And once I corrected it, we got the right baseline. After I had started my cycle, then I was able to move forward with it. Asking a lot of questions has been like a big. Thing I've learned. And I feel like I was always pretty good at it when I was a nurse, because I would see so many patients be confused about their treatment plan because they didn't ask questions or they just went along with it and not in a long. And then I would see afterwards, like how much of the information they missed, which is totally fine. They have no. Context for the information they were just given. But I I definitely had to utilize that skill more than ever through infertility because I get so many calls. You get calls. It feels like every day, especially during the whole IVF part of it. Something else that people mentioned to me before, and I actually found it very helpful, was Taking breaks from infertility, if you need it.

Joni:

A friend had mentioned that to me. And it can be hard to take a break because you already feel like you're falling behind your friends are already having children or they're pregnant. And you're like, I don't want to wait a few more months, but taking a break can. Relieve your mind and give you some peace. gOing to Europe in the summer was huge for me. I feel like the summer went by so fast because I wasn't paying attention to my body every single day and how it felt. And then going to Disney was also, an important break that I took. Something else that they talk about through infertility is disenfranchised grief. And I wanted to chat about this a little bit. For some definitions of disenfranchised grief. It refers to any grief that goes on acknowledged or unvalidated by social norms. This kind of grief is often minimized or not understood by others, which makes it particularly hard to process and work through. Uh, different websites said disenfranchise grief is generally grief. That is not openly acknowledged, socially accepted or publicly mourned. It's can be applied to other situations, but infertility is definitely one of them because you have so many losses. And they're not necessarily recognized by others because they don't know that it's going on. there's not really a common way to share about it and, and people don't really understand it. And so, when you have a failed IUI or a failed egg retrieval or failed frozen embryo transfer. If you don't have genetically normal embryos, these losses often go unacknowledged and unvalidated. And so you are grieving. This loss of this idea of this. Almost person that you thought was going to be in your life. yOu're grieving the loss of maybe your financial freedom. your time. Your plans. The family you thought you were going to have, cause it's taking longer than you thought. So there's just so much grief that goes into it. I guess I say it because. When you hear that someone's going through infertility. Or if you're going through it, recognizing like this is some, some real grief, even though there's no burial plot. People don't really know how to rally around you. And there's no obvious way to, receive that acknowledgement and validation. Unless you put it on a podcast. Like I'm doing. I want to talk about a few things that people have said to me that have not been helpful. One of the most common ones you will hear about is people saying maybe you're distressed when you can't become pregnant. I don't know, maybe that's true, but it is not helpful Because at least at the time, I can only change my stress level so much. I was in school full time. My husband and I didn't live in the same state. So we're driving back and forth. I was finishing up my project. That was very time-consuming. I was writing my big paper. So. Lowering my stress. Wasn't really something I could do. Very well, and it made me feel like it was my fault. And by that logic, we should have become pregnant when we were in Europe, because I wasn't stressed during that time. So just like, wouldn't say that even if anecdotally, that is true for you. It's not helpful. I just would stay away from maybe you're stressed and that's why you can't get pregnant. Something else. That I hear people say is like, well, everything happens for a reason. And The other day, Trevor and I were walking and he said, I'm so grateful that we were born in a time when IVF is an option, because we would be those couples that try and try and try for years and maybe we'd adopt, which is obviously another wonderful way to build a family, but it's nice that IVF is an option right now, but let's say we lived a hundred years ago when IVF wasn't an option and someone's like, everything happens for a reason. I would think the reason is that I'm not supposed to have children. I think it's better to just. Ask questions and be curious about their experience instead of trying to ty a pretty bow on their experience like, oh, well everything happens for a reason. So it'll happen one day when the time is right. Which might be true. But it's not helpful. One thing I found that was hard for me. Is. the egg retrieval was pretty rough for me. More of the recovery. I was in pain for a long time. I was nauseous. And then I got sick on top of it, which was like not fun. I was in pretty bad shape. And I was complaining to someone about one of the many. Symptoms and. They said. Oh, just wait until you're pregnant. They meant nothing mean by it, but I was just like, yeah, I'd love to be pregnant. Thanks for reminding me once again that I can. I get pregnant. Like just let me have this. Let me just complain about this part of it. I guess it felt very like dismissive so comparing someone's symptoms to pregnancy. Wouldn't recommend. Something, I heard someone say at their fertility center was like, yeah, like the support groups can be helpful, but I guess I don't know exactly what they said, but kind of what I heard was. Don't get too far into it. Like. I don't. Let that become your whole personality. And. I think that was just hurtful, because again, it felt like dismissive of how hard this is about dismissive of. The grief that you go through. For some people, maybe for Toby's part of their life, and this is really standard. And they're like, oh yeah, like this isn't a big deal, but I'm like, you're right. It is not a big deal to you, but it is still a big deal to me. And so by saying that, it just made me feel dumb when I went to a support group, because I'm like, is this just me not being able to handle myself, is it that. You know, I'm making a bigger deal out of this than it should be, but being in a room full of people who are struggling was validating and didn't make me think about it. A lot more. I already think about it all the time. So those are a few things I would. Avoid. Saying.

Samson Q2U Microphone-3:

I guess I'm feeling like I've said a lot of what I wanted to say. So in wrapping up. I hope that if you are going through it You have someone to talk to, and if you don't, you go to one of those groups or you can always reach out to me. I can't be there for everybody, but I'm happy to talk about it because it is truly on my mind so much. I've talked about this before with people in my life. But if you were to ask me how many times I've thought about infertility in one day, Especially the last few months. It's probably like 25 to 50 times a day because I'm reminded of it so often I feel. A new tenderness in my pelvic area. I'm like, oh, what does that mean?

Joni:

Whenever I get a nosebleed, I'm thinking, oh, is this a nosebleed? Because my period's about to start.

Samson Q2U Microphone-3:

My body reminds me and then I see children in that reminds me of it. And then people ask me if I have children and that reminds me of it. And then I see people who are having kids who I thought I was going to have a kid around the same time and that reminds me of it.

Joni:

Being on Instagram is really hard for me. So I got off of my own personal social media for awhile because seeing pregnancy announcements was really challenging.

Samson Q2U Microphone-3:

So it's just like endless. anD then it's if you're actually doing fertility treatments oh, you have to make sure you do your shots at the right time. So that makes you think of that.

Joni:

It really, is this ever present? Topic oN your mind. And I've asked my husband before, like how many times have you thought about infertility today? He's like, not until you just brought it up. So the woman typically feels the. Brunt of it. And then that can be very isolating because it's like we're going through this together, but I'm the only one that's thinking about all the time.

Samson Q2U Microphone-3:

If you're going through, please find someone to talk to about it. And maybe I hope that listening to this, maybe as a little bit helpful. And if you aren't going through it and you know, someone who is. I think you should ask about it. If they don't want to talk about it, obviously that's fully up to them. But I think about it all of the time. And so I love when people ask about it, because then I get to talk about it freely. That. Very well, may not be true for your friends. But just, knowing like, Hey, do you like talking about this? Is this something that is helpful for you? Yes. Okay. I'll always check in when I see you or I can check in once a week and just text you and say, Hey, I'm thinking about you how's fertility stuff going this week. And also depends on like different stages of fertility is like more intense than others. Like during an egg retrieval. It's two weeks of very intense. Monitoring and shots. And yeah, that was really helpful when people are checking in.

Joni:

One unique way. I had a friend support me, was sending me these

Samson Q2U Microphone-3:

socks that say stick, baby stick. And something else, but it's when you do an embryo transfer. You have to wear socks. And so I guess there's this thing about Yeah, people just were they're lucky socks. It's superstitious a little bit. So my friend who's never been through in fertility. Asked her cousin who has and said what's something I can do to support my friend. And she said, oh, why don't you get something like this? That was so thoughtful. I felt like she actually did the work to be there for me. And that meant a lot. The biggest thing for me though, has been people taking the time to learn about it. tRying to understand the process so that they can like, respect how much I have to go through to bring this person into existence. I went to a therapy session a couple months ago. Talking about how I'm like, I just want to be appreciated for how much I'm doing for this, because it feels so unfair. And it was particularly about my partner and she's like, what do you feel like you can ask him for that? And I'm like, yes, I can. So as soon as I asked for that, Then I felt like I was getting more, like I just wanted acknowledgement and maybe again, that's not what everybody needs, but I want it to be acknowledged for what I was going through, what my body was going through. For this little human that we're trying to bring into the world. ANother thing I've thought is just recognizing the financial burden. It can be for people we're really lucky that we can afford this. Our insurance does cover portions of it, which was so helpful, but that's not the case for everybody. And so recognizing that, like this. Sucks. It doesn't mean you have to give people money, but. Many people can get pregnant without any intervention, without any fertility treatment. And they don't have to spend thousands and thousands and thousands of dollars to get their son or daughter. And just recognizing and acknowledging I'm so sorry that you have to pay for this, that you have to physically pay for this. You have to emotionally pay for this, I'm so sorry. And that That can be very helpful. During Thanksgiving, my dad and my step-mom were visiting. Us here in Utah and. She happened to just be home. Just she and I at one point. It was one. I had come home from that baseline ultrasound and there weren't a lot of follicles and I was really disappointed. A true rollercoaster. And she just hugged me and cry. It was me. And it was the sweetest. Moment. And then so much that she was like, feeling this with me. And. I know that not everybody is that person, but she is. And it was like a minute long, a hug. And I really just wanted someone to be sad with me. And it was so helpful.

Joni:

Big breath. I want it to end with another quote from the retrievals podcast that. Really hit me. And. That rang true for me. Throughout this experience. She says the patient puts up with a pain because she longs to have a child. The doctor knows the depth of that longing getting the eggs causes a one kind of pain by relieves another. The literature on pain and fertility procedures is for the most part, very concrete. What should we use for the pain rather than how should we think about it? But I did come across one study with a more holistic approach, a paper on trust, pain, and exit points. This paper explored why patients chose to endure the pain of fertility treatment and what experiences of pain made them quit. It was an idiosyncratic paper, kind of a mix of the sociological and the personal and the research had been done 20 years ago in Israel, in a setting where egret. Evil's were done via an incision through the abdomen. But what still felt applicable? Actually what felt timeless was the author's conclusion. That you endure the pain of fertility treatment because you, in a way are already a mother. You are in the future in which you're already a mother and you are suffering on behalf of your children. Put aside, the notion that suffering on behalf of your children is intrinsic to motherhood or that all fertility patients want to be mothers. Of course there are patients who would not use this word or find that identity relevant what's meaningful here is that you put up with a pain in the present because of how badly you want, what you want in the future.

Samson Q2U Microphone-3:

Yeah, that just really resonated with me because. It's this Longing for something so good that you see other people get. Or sometimes not even one. And and it feels so far away. So I think that's all I have to share today. I'm going to link a few resources. I talked about, particularly Natalie Crawford. I'm going to link the IVF video I've sent to my friends that I said like, it'd mean a lot to me. If you listened to this.

Joni:

I'll link the Utah infertility resource center website. If you want to go to their support groups, as well as the support groups that are offered by postpartum support international or PSI. Also I'll link the cute socks that my friend got me. There are only like, I think$10 from Amazon right now.

Samson Q2U Microphone-3:

If you stuck with all this, thank you. This is a longer episode of just me talking, but. I just really felt like I needed to share this. We're hopeful that the embryo transferable will stick in the next couple of months and that we'll be able to move forward with building our family. But. In the meantime. Thanks for listening. Thanks for being here.

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Joni Lybbert

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