Tag: IVF journey

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Episode 80SN: An IVF Journey that includes repeated miscarriage…and pregnancy: Amy’s Story, Part II

This is a show that shares true experiences of pregnancy to help shift the common cultural narrative away from the glossy depictions of this enormous transition to a more realistic one.  It also celebrates the incredible resilience and strength it takes to create another person and deliver them into the world. I’m your host, Paulette Kamenecka. I’m a writer and an economist and the mother of two girls. In this episode you’ll hear more advice about things to think about on your fertility/ivf/pregnancy journey–knowledge that just might make the often challenging process of fertility a little easier to bear (and maybe also things to help you to keep hold of a bit of your sanity, as her book title suggests) from the former writer who covered the “fertility beat”, before such a thing existed, for the New York Times. What follows is the second part of our conversation.

Fertility Statistics

https://www.acog.org/clinical/clinical-guidance/committee-opinion/articles/2014/03/female-age-related-fertility-decline

https://www.acog.org/womens-health/faqs/having-a-baby-after-age-35-how-aging-affects-fertility-and-pregnancy

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8237340/

Tongue-Tie

https://www.mayoclinic.org/diseases-conditions/tongue-tie/symptoms-causes/syc-20378452

https://kidshealth.org/en/parents/tongue-tie.html

Audio Transcript:

Paulette: Hi, Welcome to war stories. This is a show that shares true experiences of pregnancy to help shift the common cultural narrative, away from the glossy depictions of this enormous transition to more realistic one. It also celebrates the incredible resilience and strength it takes to create another person and deliver them into the world. I’m your host, Paulette Kamenecka. I’m a writer and an economist and a mother of two girls. In this episode, you’ll hear more advice about things to think about on your fertility/IVF/pregnancy journey that just might make the often challenging process of fertility a little easier to bear, and might help you keep hold of your sanity in this process. This story comes to you from the former writer who covered the fertility of you before such a thing existed for The New York Times what follows is the second part of our conversation. 

Why is it so constricting of your time other than like the windows were like, Oh, we, I guess I don’t even know what the windows look like what?

 

Amy: So let’s say you have to go in on the first day and if you don’t know when you don’t know when you don’t know when you first see is you don’t know when you hit. You’re not supposed to be drinking. Usually I’m not a doctor and so I’m not giving any medical information but a lot of people don’t drink and let’s say don’t even do drive through or whatever they want to ruin their psychology. You know, marijuana can cause firm documents. So do not get in. Let’s say you go in the first day of your period and if you go the third day and the fourth day seven planets around your work, then you have to see how your body then you’re taking medicine to increase the egg while you’re doing an IUI or an IVF. Medicine so you don’t know how the medicine might keep you up at night. You might be sleeping, it might be bloated. Then you have to do a retrieval which is like a half a day off but you don’t know if you could go away you don’t know is there going to be on day 14 or 16 if I got am i doing a transfer my cancer the embryo back to me and am I gonna guess take it easy those days that I have to wait two weeks or a week and a half to find that out or not? And then I might be a little bit pregnant, and then I might be not pregnant. So I mean, I don’t even taking over your entire life.

 

P  2:32  

Yeah, yeah, that is dramatic. When I remember about my experiences that I felt judged not by my doctor, but by the process. The idea that as a woman you could or should be having babies and so it’s culturally reflected back to us in 100 different ways. And when your personal machinery to make that happen, they’d be feeling you. It’s hard to feel as though you’re doing something right. It almost felt like like a moral condemnation. Oh, you know what am I going to save my ovaries not working. You’re not fit to reproduce, or it just it felt very personal in a way that some issue with my with my appendix with them.

 

A  3:10  

I mean, I hope that the doctors are better now than they were then. You know, you’ve dealt with women at the clinic. But then you’re like on Facebook at a meeting about someone else. Oh, I only got 20 eggs and you’re like what I got three eggs. And then there’s that competition is rife with so much disappointment. Like once you’re the thing Oh, I only got 20 eggs and only kind of fertilized and only five minutes day three and the only one ready for transfer. So there’s just you know, this law of diminishing returns on your disappointment. But there is for anyone who can’t get pregnant right away. Just this notion that we all thought it would be easy, and it would be quick and it would be simple. There’s that whole disappointment of like my body’s failing me I’m not doing what I thought would be easy to do.

 

P  3:59  

As me suggests it would be super easy to get pregnant. idea that felt like a threat before I was ready to have kids and a taunt once I was ready and couldn’t get pregnant. But I don’t think that I did matches up with the numbers. So here’s some of the numbers. According to the American College of Obstetricians and Gynaecologists, also known as ACOG. You had your maximum number of oocytes or immature eggs when you were a 20 week old fetus, which was six to 7 million by your birth to down to one to 2 million. By puberty, you have 300,000 to 500,000 by age 37 with 25,000 and only 1000 By age 51. This is a sight on here but I thought this was pretty funny. I was telling my daughter about these numbers and she said that’s fine. It’s not like a little What 25,000 Is what I’m 37 So the issue with that is that not always xx will be chromosomally normal, otherwise known as euploid. Sperm mature over a period of about two months. Eggs mature over a period of decades. It sounds like there’s a lot of stops and starts they mature to a point and then they wait and then the next trigger happens and then they continue to ensure it’s not like these miniature eggs are active for the whole period. And it’s important this very long maturation process that scientists think contributes to the much higher rate of chromosomally abnormal eggs that’s firm. By the way, male fertility also declines with age but less predictably. The American Society of Reproductive Medicine reports that while women under 30 have about a 25% chance of getting pregnant naturally each cycle, that chance it drops to 20% for women over 30 Forget estimates by the American Society of Reproductive Medicine by 40 the chance of getting pregnant naturally each month. It’s just 5%

 

A  5:45  

you know, just like you need medical medical, you didn’t think you would, you know you just thought you’d get up at the doctor for when you’re pregnant. But you didn’t think like this basic bodily function is not you know, I think like a third of IVF patients are under 35. So it’s not a matter of needs a lot of young women going through this Ludhiana Linda. So it’s not like oh, I’m too old and I waited too long, but also like oh my god, I’m so young and all my friends are getting pregnant and I can’t that’s such a hard feeling.

 

P  6:16  

Yeah, that was definitely a hard feeling. It was definitely a hard feeling. But I agree with you that it this is like a cultural perception of what men expect your body to do and what it means if your body can’t do that. And it’s not necessarily accurate, right, your body can still do a million other things.

 

A  6:33  

I’m sure though people who have diseases might be mad at their body to you know, yes or no.

 

P  6:44  

So I’ve always been issues in cancer and I can, I can attest that at least in my experience, there is this sense of failure of like, how did I you know what did I do wrong to get to this spot, although that also and pregnancy are less than this. You don’t have that much control over your right. We imagine that we deal with but we don’t really

 

A  7:06  

  1. You know, right? You don’t know how your body’s going to deal with anything. In life. That’s the truth.

 

P  7:14  

So you did all that and had miscarriages and then he did, did you say nine cycles of IVF? Yeah. How many years does that take

 

A  7:29  

it was three years until I was pregnant with my daughter. So it was four years until I had my daughter because it wasn’t like once I had my daughter, I knew she was going to be my daughter for i for all intents and purposes, I was never sure she was going to be born either. You know, so that fourth year was brought during her pregnancy. Well, because pregnancy after it’s good after IVF but also after a miscarriage is very fraught like my doctor said to me, you’re not going to be happy until the baby is in your hands. Because I was like, why am I not happy? He’s like, because of what you’ve been through. Yeah, that’s,

 

P  8:07  

that’s a hard road. So did you enjoy the pregnancy at all? Were you able to?

 

A  8:12  

I think I had a moment in my second trimester. You know, there was a moment in my second trimester where I was like, we went on a baby man and everything but I think that I was very, a little bit dissociated from it. In the whole time like my heart we had a rule because we have a whole heartbeat monitor because like I would go to the doctor I would get everything would be great. And then by the next day, I was like, I don’t know if I you know, cancel a baby. So my husband we put a cap on it that I was allowed to check the heartbeat once a day on the home heartbeat monitor, and even that and my husband used to do the state, like you need cream to put it on the ultrasound jelly. And he was let me try it without jelly. And like I would still you know, I would still lose my mind in that moment before I felt the heartbeat. So when I was like nine months pregnant, and I was dealing with you know, at the end of June and July and everything I felt pregnant, but I never like allowed myself to leave in full for like I talked about this in the last chapter in my book about you know, pregnancy after miscarriage pregnancy together. IVF and there’s a school and this is you know, for everything. Electrification like Oh, I’m happy, you should be happy. And like, I hate the word. Like you shouldn’t be happy, okay, you know, my body. Don’t tell me how to be like, I’m nervous and I’m understandably nervous and I can’t be happy. You know? I’m sad that IVF and more repeat miscarriage do not ruins but robbed me of that experience of being you know, the happy go lucky. But that’s just what a lot of people have to go through.

 

P  10:05  

Yes, yeah. Amy talks about the complicated feelings that accompany pregnancy after repeated miscarriage. She writes that if you’re like me, and so many other women who grow to motherhood was as wealthy as a bouncy castle, you might not exactly have the pre pregnancy always dreamed up. You may no longer have the desire to post Tietze but in the oven gift on social media, have a gender reveal party with a pink or blue cake or endlessly debate baby needs. First of all, you might not want to do all of that sensitivity to all your friends who are still adding second, you might be too nervous. I myself have been pregnant so many times that at first I couldn’t believe this fifth pregnancy was the one that was going to stick. And then she writes with a heartbeat came relief but only momentarily. A few days later, I’m back to worrying again. After all I’ve heard a heartbeat once before and after this he ended it because I hadn’t been paying enough attention now I was paying attention to every swallow twinge flutter. always nervous while I wasn’t feeling anything in particular pregnancy was so so tense. Even when I pass the in utero blood test for major diseases and move into my second trimester. I still couldn’t relax. I couldn’t be happy not for longer than two minutes. I was having what I later realized was infertility PTSD. I can’t imagine you’d be any other way after your experience. Right? I mean, then

 

A  11:26  

people you never know. You know? Some people on IVF people are not. Well, some people like a pregnancy anyway. They hate every minute of it. They also have to deal with oh, why are you healthier? You should be happier. You don’t have happy hormones. It’s gonna ruin the baby. You know, almost expectation. It goes I mean for fertility people it goes farther back with like, oh, you should be happy for her. Why can’t you be happy for her? You know, your best friend’s pregnant your sister’s pregnant? Your brother in law’s pregnant and you should be happy for them. You know, it’s funny like in the last 10 years, so much has changed, like fertility has got better and more people have done it but sitting on all these Facebook groups, which didn’t exist when I was going through it, but like, it’s still the same emotional journey. You know, like people just complaining that their mother is yelling at them. They’re not acting happy for their sister. Or you know, things like that. It’s just an expectation about how we should feel is ridiculous. And I don’t know if you can explain it. You know, I always tell I always say that. I went through so much with infertility and still when I was pregnant and I had some that I kind of understood finally why other people want you like to share that joy. So I do it from both sides of the aisle. But we can’t expect anyone to like have feelings for us. They have their journey and we have Arthur.

 

P  12:50  

It is it is hugely complicated. And I remember going to the gynecology office when I wasn’t yet pregnant, surrounded by pregnant women, you know, waiting my turn to do the IUI or whatever, you know, just overwhelmed by the sense of like they’re making it look easy. A lot of pregnant people out there is this is true. You seems hard to me somehow.

 

A  13:11  

I mean, the nicest thing I always say this, my oldest friend was growing up. The nicest thing she said to me was she had four kids and her oldest was eight. So I had assumed she was like totally done. And I was trying to hear about something. And she said, Amy, I have to tell you something. I’m like I don’t know. And she said to me, I just need to tell you that I’m pregnant. And but you don’t have to be happy for me. I just want you to know that. This still makes me cry because I’m always like, that is the nicest thing anyone ever said. Like just letting you know, you don’t have to monitor your reactions for me like you could just be who you are.

 

P  13:48  

Yeah, I agree. I agree that I would imagine you feel seen when someone says yeah, because it is like a recognition of all the things that you’ve been hurt. Yeah, for sure. Amy has a chapter in her book about managing your feelings about other people’s pregnancy in the face of your infertility. I’m going to share another excerpt here. She writes, how culture can often perpetuate the myth that female friendships are Ride or Die through thick and thin Sex and the City girls etc. Reality lose friendships are rough, especially during life changes and extra especially when one of us is pregnant and one of us is not but desperately wants to give it to someone else to make room for their infertility feelings, or your pain or your fears for the future. And that’s a relationship where it’s safe. Because through the delivery of your daughter, I don’t know though. were you imagining you know, a water birth or you know, home birth or something like that,

 

A  14:44  

or what did that look like? You know, just it’s funny so I had all dated during my journey I went and all these alternative journeys as well. Like I went to baby healer who told me I had locked maternal energy. I went to the

 

P  14:59  

stop right there. So I’ve been to a Reiki healer as well. What do you think? Were in the moment where you’re like, Oh, this feels better?

 

A  15:07  

What was your reaction? I think I went twice so it must. I can’t What did I think I thought okay, I’ll try it like to think that I have very bad association with motherhood given my own family history, and I don’t have a good energy for motherhood and I have to connect to like the positive energy for motherhood.

 

P  15:33  

super interesting.

 

A  15:35  

Probably not really relevant to my journey. You know what I mean? Like it’s it didn’t solve any of my issue.

 

P  15:43  

Okay, totally interesting. So let’s go through that. I’m totally interested in the that once the conventional things don’t work, all you have left is to try all the alternative.

 

A  15:51  

Exactly. So I went to I went to the Jewish ritual bath, which many religious women go to every month after their

 

P  15:58  

bed. And what’s the what’s the theory behind that?

 

A  16:01  

Why is that supposed to help? Well, religious women go through actually something that’s very good for fertility basically, I don’t know if people know this. But they are not allowed to have the week of their paid and a few days after. So they’re basically abstaining from sex for the first 12 They’re basically having sex in the most fertile window. Their cycle if their cycle is normal and not normal, then they have a lot of trouble. So they could have the ritual bout themselves. There wasn’t something I was ever planning on doing. So some people go there and they say, they blessings and everything like that. And I just, you know, it’s one of the things I was doing making that kind of thing I was there. But one of the things I did after the Reiki healer, which was you know, not only it was also try to picture the picture, you know, lying on the table Q hospital scene of the woman screaming in pain, I mean, I always knew I was gonna have drive like after my journey, I’m like I but I always try to picture labor and kind of picture picture picture. I was like my, you know, law of attraction moment like picture giving birth. And it didn’t happen that way. Because the closer we got to Brenda, I was 40 What I really wanted and I was trying to avoid a C section at 40 weeks. My repeat miscarriage specialist by Amy I really liked you to know you’ve been through. I’d really like you to give birth. I was like just getting you to 41 He wasn’t even my, my maternal fetal medicine doctor. He’s like, he’s like, you can’t have 41 Like you work too hard to get here. So I just was like, No, my dad is going to come out. She’s going to come out now that I know her. And I know that she’d leave like her father all the time. And I think I sat in there for 14 So 14 and a half years. And at that point, I realized that you know, despite all my imagery of radicals, neighbors, friends, I was kind of like on the fence. I was like, I just like I don’t care their way of doing. I know what happened. When we started. We did the epidural, and they said that the baby was not taller. It wasn’t like an emergency C section. They just said she wasn’t tolerating it very well. So we’re gonna move into a C section. And I crazy. In the last month of my pregnancy, I had this crazy itchiness and it wasn’t due to any. Sometimes it has to do with like a liver problem, but I was just like praying for the baby. That’s when they gave me an epidural. I was like dying from fussiness and they gave me this massive dose of Benadryl. That’s kind of out of it. For the C section. There’s a little bit out of it, and I haven’t C section and my plan was not followed at all. I was still mad and my husband didn’t. I want I didn’t want her to be. I wanted her to have her right away. I’m still kind of upset about that. But I was on the fence at that point. I wasn’t going to ask for like a scheduled C section but I was like to do it.

 

P  19:17  

And so they did the C section and then they you get the time with the baby on your chest and how did you feel when you actually had her in your arms?

 

A  19:27  

I was super out of it because it was Benadryl. I was happy. It was beautiful. It was like it at NYU downtown overlooking the water. Like we had that picture. It wasn’t like oh my god, I finally have the baby. My whole infertility journey was over. I can just relax now it took a while. You know, and I don’t know I don’t know how like a woman who wants to be home. I feel like I don’t know. I don’t have anything to compare to but there’s definitely like, I was definitely more nervous and I think if I would have just had a baby, like just straight. You know, I was like, nervous. I was always checking if she was awake. I was checking her heartbeat monitor and I know that a lot of newcomers. But I was that’s not my personality. It definitely is fertility made me a lot more overbearing and nervous than I would have been. And I think that there was like, you know, and then, of course you know, it’s so funny like when you’re not fighting but like when you ran a marathon. Then after the race you like, you want to have your medal, you know, and then you can relax. But after we have the baby, you’re like your baby breastfeeding and everything else that comes with it. So it wasn’t like you have time to go and do things like the first six months. I think it wasn’t like I didn’t have trouble bonding with her. But I don’t think I felt like I can release that breath. It took me a while to be separate even while figuring out breastfeeding, which is like the second part of the world after infertility.

 

P  20:57  

Well, you took four years to wind you up. So I can’t imagine you round down you know, immediately so that totally makes sense to me. And the extra attentiveness once the baby’s born also makes sense given that IVF kind of opens this, like pull the curtain back to show you what it looks like when things don’t go well. Medically. Right. Which is

 

A  21:20  

right, correct for a lot

 

P  21:21  

of us because we’re relatively young and we have kids. You haven’t seen that before. And it is a little bit shocking, right?

 

A  21:28  

I mean, I think I read a statistic that many women never send in the hospitals giving birth. Yeah. And I think I was also one of those people who just believe everything’s going to work out. I mean, I moved to New York City at 39. I moved to the Upper West Side and I met my husband. So that’s takes a kind of optimism that make the fire.

 

P  21:50  

That’s awesome. And so it sounds like the fourth trimester for you was challenging like it is for a lot of people. Yes. Did you get the hang of breastfeeding or how did all that

 

A  22:00  

go? No, I had to have my daughter’s tongue tied. Because she was I was pumping. I was explicitly pumping and she was not getting anything out. And then finally lactation consultants told me to, you know, get her time steps.

 

P  22:20  

According to the Mayo Clinic, tongue tie is a condition in which an unusually short thick or tight band of tissue connects the bottom of the tip of the tongue to the floor of the mouth, which restricts the 10s range of motion. Although doctors don’t know why it happens, they know what happens during fetal development. If a newborn has tongue tie, it can make it difficult to stick out their tongue and it may or if you’re breastfeeding, sometimes tongue tie might not be a problem. And sometimes it requires a simple surgical procedure, like the one we described, where the doctor clips the tissue to free the top. That tissue doesn’t have many nerve endings or blood vessels. So often this procedure is carried out in the doctor’s office without anesthesia and babies younger than three months old. And so and you said now she’s seven and a half. Oh, wow. What she is who? She does her singing

 

A  23:11  

damn fan talking and arthropathy Yeah, so she’s nonstop talker.

 

P  23:19  

That’s cute. Is that is that a run in your family? I guess. Like sometimes

 

A  23:27  

I was on. I don’t I don’t know if I mentioned this, but on my have the BBI with integrating High Courts of immune suppressive drugs. I don’t know if you are. But I can move on. Very high dose of prednisone steroid that is controversial, but you know and it makes you crazy. So I always joke I was like I was the steroids but she’s so like, everything is amazing. Everything with our daughter like a 10 She’s on either amazing or horrible traffic.

 

P  23:58  

That is super cute. So I’m actually a weird outlier. I love Britain. So I’ve been on a bunch of times. And it is the kind of thing where like, you never get tired,

 

A  24:07  

never feel tired. It’s like, sometimes you wish I was like, oh I can be but right now.

 

P  24:15  

Totally. But that’s amazing. She sounds horrible.

 

A  24:17  

Yeah, she’s great. And she just we just got it together.

 

P  24:24  

Wow, that’s fun. So I bet you have a lot of advice for younger you. But if you could give your younger self advice what what do you think you would focus on?

 

A  24:36  

Well, if I would give any young women not only young women, young self, but just any young woman is I you know, we all know so much about our politics and our finances and I just wish that we knew more about our body. And you know, people would say Oh, do you think every woman should freeze their eggs? I’m like, I don’t care if people and I don’t care if they even have children. Norma, I just like in their late 20s. I want them to know about their body and they want them to know if they have people that might be if they have no period they want them to know that might be PCOS. They want you know, I speak to so many women in their late 30s When a lot of these things interfere. I just want everyone to be educated. And I think what happens is there’s so much going on in the world and there’s so much to be worried about. I think, you know, young women who don’t have a partner or don’t know if they want to don’t even think about it they don’t even look and they’re like I’ll deal with that only up I just want every author and every woman even men know your family history. Like I didn’t find out until who knows when that my brother had blood circulation issues. Hello blood circulation issues are gonna affect me as well. You know, I just want people to know whether I just want everyone to make an informed decision and have all the information just the way you would about like buying the house or just not that information like demands that were female empowerment.

 

P  26:03  

Yeah, it is. It is amazing. And I think a lot of us, myself included, learn a lot on a pregnancy journey. Well, when things don’t go well and when things do Right, exactly. We have not prepared to do it earlier. If I would give advice

 

A  26:16  

for anyone who’s having fertility issues and also just this is a finite moments in your life. It feels like it’s gonna last forever, but it’s not going to last forever. So like, you know, you know, even though I had that picture in my mind of having the baby on the table, and I didn’t have it the way I wanted, and you might not have the kid the way you know, but you might not have it the way you think you’re gonna have. You’re gonna get that in school, but you know, some one way or another.

 

P  26:43  

Yeah, I think that’s good advice. It is a useful perspective because for sure when you’re in it, there’s nothing else. Right, it’s very hard to look up. Well, thanks so much for coming on and sharing your story and your book called The trying game is available all over obviously. All over Amazon but

 

A  27:00  

any bookstore. Yeah. Actually, if you like the sound of my voice, I’m actually narrating the audible version.

 

P  27:09  

Oh, that’s that’s awesome. And you have a website people can go to to find your other writing. Yeah, you can go to

 

A  27:21  

trial, but that calm and I have lots of articles on fertility, health, parenting,

 

P  27:30  

things like that. Okay, that sounds great. Thanks so much. Thank you. I look forward to it. Thanks again to Amy for sharing more about and really appreciate conversations with women in which they share their actual experience. Our goods in general Warren, Washington.

 

You IBM, we’re also hashtag grateful for everything we fought for. You do not discuss our mixed feelings. I’m not talking about the feeling of being scared shitless the excitement and terror that comes from knowing I’m talking about the leftover infertility of the past, mixed in with the cost of child labor. She writes. I think it took me a few weeks to feel that unfair joy. Sure. I was recovering from major surgery and trying to exclusively breastfeed the second world after 70 to subsist on negative sleep to entertain every form family member by myself. I couldn’t relax. I understand she was here to stay that she was mine. Mama, exactly. Receptionist would say a few times before I understood that she was talking to me. I am the mama. Yes, I ran into check on the every five video monitor. Meanwhile, I was outside. The only ones because I was also still running for my feelings like I had during fertility. I was still unable to relax the Brotherhood. Did I fear of the baby not waking up one morning I was overwhelmed but my fears this year to see what another day with her would bring. An early read was crowded out. And finally going through infertility as they be more sensitive to others. Because I remember what it was. I don’t remember every HCG data. Every embryo counts every medical protocol. But I do remember the the desolation of not having a child having a child this child this wonderful, beautiful, adorable person. There were so many dark days. I never thought I would get here. I didn’t know whether I would recover from a pregnancy loss. I didn’t know that I could start fertility takes away from uproot my life move across the world with just the world getting pregnant and moving on without being who was denied the one thing I wanted. I did not know what the settlement was together. Yet. Here we are with our curly girl in a mermaid bathing suit flopping around with a fish. Most days the gratitude has to go against me to college and I have to just pretend to be a regular thanks so much for listening. Hope you enjoyed this episode. Feel free to like and subscribe. I will be back next week with another inspiring story.



 

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Episode 79SN: An IVF Journey that includes repeated miscarriage…and a pregnancy: Amy’s Story, Part I

This is a show that shares true experiences of pregnancy to help shift the common cultural narrative away from the glossy depictions of this enormous transition to a more realistic one.  It also celebrates the incredible resilience and strength it takes to create another person and deliver them into the world. I’m your host, Paulette Kamenecka. I’m a writer and an economist and the mother of two girls. In this episode you’ll hear suggestions about what to do with repeated miscarriage and gain insights about the highs and lows of the often challenging process of fertility from the former writer who covered the “fertility beat”, before such a thing existed, for the New York Times. What follows is the first part of our conversation about her experience working her way through the infertility gauntlet. 

You can find Amy’s writing, and her book The Trying Game, here

You can find Dr. Kutteh’s work on recurrent pregnancy loss here, here and here

Chromosomal abnormality

https://www.ncbi.nlm.nih.gov/books/NBK557691/#:~:text=A%20chromosomal%20abnormality%2C%20or%20chromosomal,%2C%20sex%20chromosomes%2C%20or%20both.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5845039/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7349251/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7925012/

Recurrent pregnancy loss numbers

https://pubmed.ncbi.nlm.nih.gov/34326658/

https://www.acog.org/womens-health/faqs/repeated-miscarriages

Hashimoto’s and fertility

https://www.conceiveabilities.com/about/blog/hashimotos-disease-how-it-could-affect-your-pregnancy#:~:text=Hashimoto’s%20disease%20means%20white%20blood,during%20pregnancy%20if%20left%20untreated.

Audio Transcript

Paulette: Hi, welcome to war stories from the womb. This is a  show that shares the true experiences of pregnancy to help shift the common cultural narrative, away from the glossy depictions of this enormous transition to something more realistic. It also celebrates the incredible resilience and strength it takes to create another person and deliver them into the world. I’m your host, Paulette Kamenecka, writer and an economist and a mother of two girls. In this episode, you’ll hear suggestions about what to do with repeated miscarriage and gain insights about the highs and lows of the often challenging process of fertility from a writer who covered the fertility beat before such a thing existed for the New York Times. What follows is the first part of our conversation about her experience working her way through the infertility gauntlet.

Let’s get to her inspiring story. 

Hi, thanks so much for coming on the show. Can you introduce yourself and tell us where you’re from?

 

Amy: Hi, I’m Amy Klein, and I’m talking to you from New York City. Yeah, I’m a journalist and a writer.

 

P: Yeah, I saw your book The trying game which is a great title. I’m assuming about your journey trying to get pregnant.

 

A: Yeah, it’s called the Trying Game: Get through fertility treatment and get pregnant without losing your mind.

 

P: Amy that feels like a tall order. 

 

A: Well, you know, I had fights with them about “get pregnant” in there because it’s not just for people getting pregnant especially not only for people who are doing for Tony, who are struggling without losing your mind I mean, that is a tall order. Overall how to keep your sanity. I want to do with

 

P: I appreciate that disclaimer. And one thing I want to just note off the very top I had a hard time getting pregnant also. And one thing that was interesting to me about your book just superficially is that we’re trying I’ve never been a part of my vocabulary until apply that word to getting pregnant. Because, you know, as you say, in your book, as many people say, you know, we walk into this with the idea of you know, we’ll have unprotected sex and will be pregnant

and then moving along. 

 

A: Right, and then it’s not easy. I mean, that’s what I thought okay. I’ll just do I promise you a miracle baby. You know, you just go to the doctor and boom, you get pregnant to try and represent that liminal state between the baby and not the baby. 

 

P: Yeah, 

 

A: not being pregnant.

 

P: So just to give you a sense of what code try means and Amy’s life. Here’s an excerpt from her book, The trying game, she writes, here’s an embarrassing confession. When I started writing the fertility diary column, my New York Times editor and I thought I write about trying to get pregnant for a bit, then transition over to “regular pregnancy issues.” “Probably three, six months,” she said, HA!, how naive we both were about fertility treatment. Then she writes, it was only after I married Solomon at 41 and found myself pregnant a week later that I realized I really want to have a child. Over the next three years, I 10 doctors, nine rounds of IVF, four miscarriages, three acupuncturists, two rabbis. One Reiki healer, five insurance companies to egg donors. 1000s of pills shots and supplements and band aids, and amazing repeat pregnancy loss specialist. And one real live baby. One beautiful baby. 

 

So let’s go let’s start way back here. Do you have siblings?

 

A: I do I have three siblings.

 

P: Growing up in a family with siblings. Did you imagine that you’d have a family of your own.

 

A: I wasn’t sure if I would ever have children. I mean, when I was growing up, that wasn’t an option to be child free by choice. When I was I grew up orthodox actually, in a community where people had four or five kids not like 10 or 11, but four or five kids. And so that wasn’t really an option to me, but I just, you know, I have friends who got married at 22,23 24 and I just said okay, I’m gonna get 25 and then 25,30 30 I’m not gonna get married at 35 Then at 35 I was no longer religious but I started noticing Oh, you know, like, not just people and other people have babies and families too. I really let it sit down and think about because I can’t just keep pushing it off. At a certain point I have to decide whether I want to have kids or whether I don’t want to have to at 35 that’s when I kind of started sat down and having that dialogue with myself. Like do I want to have children right now? And for me, I think for anyone going through a journey in life where you have to change something even countries you lose a parent, something happens in your timing or 30 and I left the religion that I was raised on you know, that takes you out of your life and that takes some time to recover and that’s, you know, may take time before you start your family or before you can meet someone until you are like a whole person and for me, you know, leaving my religion in my 30s definitely took a long time and I had to look at myself say oh, do I want and then I realized you know even though I grew up in a very family oriented community, oh, you know what, even if I’m not part of that communityI think I still want to have kids if I meet the right partner, and I didn’t meet my husband till I was 39.

 

P: Okay, and so, describe how you crossed that threshold how you decided okay, I do want kids.

 

A: A lot of therapy. 

 

P: Okay

 

A: For me, after I left the religious community and also realized, well, I don’t really know how to raise kids, if I’m not in that framework. I started doing a lot of kind of my nieces and nephews and I realized that I wouldn’t be the same parents as my parents were and I didn’t have to do that parenting and just going through seeing my brothers kids who were very religious, not like me, and I was like, oh, you know what, I think I am able to do this. And I don’t have to do it the same way that I was raised, I don’t have to do it with the same parent exam. And I think I can do a good job. So that made me realize that I was going to be a mother. I wanted to be a mother and I also thought I could. I don’t think I didn’t think I’d be able to get over on my own issues with my parents. Unless I had I wanted to move on and have a family of my own in order not to repair the past, but just to move beyond and you know, inculcate my own values. And that took me a while but I also knew that I wasn’t equipped to do it on my own. Like I knew I couldn’t be a single mom, I didn’t have the resources and I didn’t have the system of support. And that was, you know, everyone has equal choices. And I’m sure if I made these choices today, if I was a 35 year old today, I might make different choices as well. I may have seen the child in the community and set out totally valid. But that’s where I was when I Oh,

 

P: yeah, yeah. All that makes sense. So you met your partner and and take us on this journey. So you from your book, it sounds like you got pregnant pretty easily the first time.

 

A: So your partner right away. Interesting story Is he is he said like three or four months day, why don’t we just get pregnant, and I still had too much of like, my religious upbringing. I couldn’t just get pregnant and skip all the steps. So you know, we we got engaged.

 

P: wait,  are all the steps like getting married? Is that what the steps are?

 

A: the steps are like dating for a longer time, making sure that like, because it was only three or four months, and I’m impulsive as a general. You know, and I talked about this in my chapter and regrets because we didn’t get married. So I was 41. And I did get pregnant the week after the wedding. And then I miscarried. And then we went on our honeymoon and I got pregnant again and miscarried again. And I talked about this in the chapter the regrets people always talk about like, and I say, oh my god, what if I had said yes to my husband and I would have just gotten pregnant at 39 instead of 41. Like and that’s a beautiful story that I could tell myself, but you know, can play on that whole story. Well, what if I had gotten pregnant? I was 39 and I miscarried once and then I miscarried again and maybe we didn’t know each other that long, which is why I wanted to in general, miscarry, it’s fine. So we’d only been dating at like, for my boyfriend. I’m out of here. I dont’ want to….So a lot of people have a lot of regrets. And I talked about this. This is before IVF. You know, what about the abortion I had in college? What if I hadn’t had that abortion? What if I hadn’t done this and there’s a lot of things that you can go back at what you’ve done differently. But as a therapist I spoke to in the chapter said, you do the best decision that you can. And if you likely play out that scenario, like you wouldn’t have made any different decisions. So when you’re faced with anything, any challenge you’re like, Oh, you look back in time, but you know, I didn’t want to get married after three months, because I didn’t think we knew each other. Well, I didn’t want to get pregnant. I didn’t think we knew each other well enough. They wouldn’t, you know, it would have been nice to know that I wouldn’t have had to go through four years of infertility and four miscarriages. but I don’t think I could have made a difference at the time

 

P: Yeah, yeah. It’s impossible to know. And pregnancy is such a complicated state. That it’s also impossible to know what it would have looked like two years earlier or you know, maybe you were doing something two years earlier that you weren’t doing later and that would have you know, I don’t know played it more than four miscarriages right like you just there’s no way to know you know,

 

A: right and likely to be you know, I finally, my miscarriage was we’re actually not due to the age of my eggs anyway, in I mean, I started this journey, you know, we got pregnant twice. Naturally, we had two miscarriages and then we started IVF. And then I still had two more miscarriages, and it wasn’t because of the age of my eggs, it was because of my body.

 

P: So so let’s go slowly through this so So usually, I thought after two miscarriages then that’s a inflection point where you go for help because more than one miscarriage potentially signals something Is that true or or what was your experience

 

A: it should have been an inflection point but I was just an OB GYN and some OGB OB GYN especially. Well, and this is like, my daughter seven now. So this was 10 years ago. I just realized, we do have a daughter. So this was let’s say it was like 10 or 11 years ago. The OB GYN first of all at my age after the first miscarriage should have been helping me and once the second one, she I did go to a fertility clinic, but then sometimes even now, fertility clinic are not always the best. Place for repeat miscarriage because they might  just start you on fertility treatment when you don’t even need fertility treatment. Took me a while I went to one fertility clinic and they just told me I needed some more vitamins and that’s why I have moved here and it took me another miscarriage and another doctor to look back and say, Oh, no, that miscarriage was normal. It was nothing wrong with your eggs. There was nothing wrong. It was your body. And it took a long journey because things are changing right now. I just want to backtrack for one second about miscarriages because you asked my advice to anyone who is undergoing a six or seven week miscarriage is if they can  to always have the products of conception. Because even though it might cost more money, you can know for certain if the embryo was chromosomally normal or chromosomally abnormal.

 

P: Okay, so what is chromosomal abnormality? Chromosomes are the physical basis for genetic inheritance. You’re supposed to get 23 copies from your mother and 23 from your father. chromosomal abnormalities can refer to a situation in which there’s something wrong with the structure of a chromosome, or the number–chromosomes can be missing or duplicated. Having the wrong number of chromosomes is the most common abnormality usually happens during cell division is the leading cause of miscarriage and is random so you can’t really affect it.

 

A: And that will tell you if the embryos from somebody after all that meant it was about likely and you know, try again, and if it wasn’t if the embryo was good. If it was not due to chromosomal abnormalities, then it’s time to start investigating, even with one chromosomally normal miscarriage.

 

P: Let me just elaborate on what Amy’s saying here. chromosomal abnormality is a normal part of human reproduction. Even at peak fertility experts think that on average chromosomal abnormalities affect roughly 20% of a woman’s eggs. And this percentage increases with the age of the mother for a variety of complicated reasons. There are more chromosomal issues with eggs than sperm, but it’s also the case that an embryo could have a chromosomal anomaly thanks to division of somatic cells or other cells in the body. And then if the embryo was chromosomally normal, that means something else went wrong. And the list of things is not in substantial. creating another person is a really complicated undertaking. And all the hormones have to be right at just the right time. And the endometrium has to be right at just the right time. And the signaling between the lining of the uterus and the embryo has to work appropriately and the immune system has to behave and the list goes on and on. 

 

A: you know So there are women who are older or younger because you know, 25% of early pregnancies and that could be a reason to start IVF if you have bad embryos, they can find the way to do good embryos but if you have common something or miscarriages it’s time to investigate something else because it’s not the embryos, it’s your body in some way that is not holding on to a pregnancy that might be to due to structural problem. And that might be also in my case. Which was due to immune issues, which is a very small subset and one of the reasons I don’t blame necessarily IVF doctors For not specializing because the women who you know, like 3% or something. miscarriages are women who are chronically miscarriage after miscarriage more than two chromosomally normal miscarriage.

 

$$P: Okay, keeping in mind that all this stuff is hard to measure accurately because a lot of people have miscarriages and they didn’t know they’re pregnant. recurrent pregnancy loss describes the experience of having two or more miscarriages according to ACOG. This affects 1% of women and other estimates put it at 3%. These numbers mix those with chromosomal abnormality with other causes, the traditional methods of analyzing the cause of miscarriage or a high failure rate, which is to say that many women don’t find out what went wrong. I interviewed Dr. Pete, a fertility specialist in Episode 68 And he’s the co author of a new approach to investigate the practice of consumption believes he can attain a significantly higher rate of successful analysis. So check that out if you’re interested in this topic.

 

A: I was one of those lucky people. So you know, I had four miscarriages and it took me to find the specialists in the field who are five or six in America who deal with women who have a miscarriage. And IVF industry is actually waking up a little bit to this fact like oh, we have to do immune testing. So there’s ways that doctors can look at they can see, Oh, is there something structurally wrong with your body? Baby not getting enough oxygen? You know, uterus helped it. Is there something structurally going on? Is there a scar tissue? And there’s also a whole field of immunologist who say is your body rejecting the baby?

 

P: So I want to get into this with you more. But interestingly, we’re following the same path here because I had trouble because of immune issues too. But it wasn’t. It wasn’t found out till halfway through the pregnancy when things really kind of tanked for me, 

 

A: Oh wow

 

P: but what was interesting about this and I went through the infertility gauntlet as well and where they’re testing fallopian tubes and uterus, and ovaries and it felt to me like there’s so much that’s unknown, because what if you’re physically fine? Then you’re in the into the vast, open hole of something else is wrong. They just cast you into the pool of, you know, some kind of fertility help. And firstly, just put us into IUI because the story was we don’t something’s wrong with you. We just want to what, let’s try this. This whole process is so complicated. I know it took a long time and a lot of effort, but I’m impressed that your doctors were able to pinpoint your problem at some point.

 

A: I didn’t need IVF at all is the whole thing. 

 

P: Oh, wow. 

 

A: I have found this doctor. And there’s a lot of doctors who will work with you conceiving naturally. I mean, I have a friend who’s pregnant with her second child. She had so many miscarriages so many places that I try to get you know, she went to so many different people and she went to the side who said she had like, like basically antibiotics and infection that was the normal standard, but like six miscarriages you know, so I mean, I think you know, like with endometriosis, it says it takes an average of seven years for a person to get ends and insurances diagnosis, which is crazy. 

 

P: Yeah. that’s a long time

 

A:  so I don’t know like, I think the doctors are doing a lot more immune testing these days. Even though they might not be the rep like I still think the president should go to a specialist and not a regular IVF doctor. But you know if people have I don’t know if you have any idea disorder, like do you have diabetes?

 

P: I have Hashimotos, which I got when I was 19. So Hashimotos is an autoimmune problem where your white blood cells mistakenly attack the thyroid gland, and they can decrease important hormones released by this gland. One hormone called thyroxin or T4 name for it is important in the process of ovulation and low levels or lower levels of T4 can stop the release of an egg or lead to an irregular egg release which can interfere with fertility. If the condition is managed through thyroid hormone replacement, you can eliminate this issue. 

 

When I was going through it, there is just this huge vast space of not knowing this, and everyone’s just kind of thrust through the IV F tunnel which it sounds a little bit like you were as well given that you actually need IVF

 

A: I mean my husband likes to say whenever you when you know when you’re a hammer everything looks like a nail. 

 

P: yeah, Yeah. 

 

A: I do think there’s some like, first of all, anyone you know, and it affected her also say, oh, doesn’t matter if your question letters or diabetes or whatever, lupus or any kind of immune disorder of anything, you know, you should be with someone who’s going to help you. You know, and it could be an actual naturopathic or there’s many routes. It’s not only my way, but it just your system is so delicate that you need help with any kind of immune issue. So yeah, I don’t have I don’t have any diagnosis and I still I can’t really understand my 20 page report. Like my doctor said I had a little bit of everything. I don’t know if I have celiac. I do have the predisposition to gluten sensitivity to celiac I have I think it’s called CDQ gene which is also a marker for immune  issues. I haven’t done the celiac test but I usually am gluten free. I went on to gluten free for my pregnancy. for fertility and her pregnancy and I mostly nothing will happen to me badly. If I eat gluten. I don’t know if I have celiac but I do know a few little things that are markers or immediate issue

 

P: from my understanding because I didn’t go the IVF route but that was you know, threatened with it. It’s really involved and emotional and physically difficult. Was that your experience with it?

 

A: Yeah, I mean, forget that we hit let’s IVF you know when I started this in 2011 in the fall. I didn’t believe that nobody was like it was felt like I was entering this secret world that you had had women standing online at six o’clock in the morning before they went to their Wall Street jobs. And then you talk to people and you’d be like then you find out that all these people had issues, but nobody was talking about in 2011

 

P: wait,  they’re standing online like outside the clinic waiting for it to open or what’s the line for

 

A: some of them…that’s what the line was for because they need their seven o’clock. Appointments. But the lines open. I mean, thankfully, you know COVID I don’t have any good COVID But one of the great things about COVID at least in the fertility world. They schedule appointments now because it used to be like a cattle call. You know, we do monitoring which is check your blood work from seven to 10 am so the people have had to get to work because nobody was telling their bosses. There was no fertility coverage. You know, nobody was telling anybody. So I mean, it’s just so you know, in 2011 it definitely felt like a secret world when I started going through it and writing about it. And so it was it felt like a big secret. And today it doesn’t feel like a secret. It feels like people talk about it, but it’s still so stressful. It’s so it’s so hard on your body taking all the hormones. It’s hard on your relationship, just dealing with all the disappointment. You know, anyone who’s trying to get pregnant for a while whether you’re doing IVF or not, it’s a lot of disappointment. You know, even if you’re trying for a year, that’s two weeks of every month, that’s six months of your life a long time to be like waiting, and then you know, you think of IVF as these three little words. Oh, she’s doing IVF but like, you can’t schedule anything, you can’t travel you can’t see anybody. You can’t make plans and can’t drink. You can’t go to the jacuzzi… So it’s really stressful on your body and on your emotions and on your relationship.

 

P: But why is it so constricting of your time other than like the windows were like, Oh, we I guess I don’t even know what the windows are what like what

 

A: so let’s say you have to go in on the first day of your trip but you don’t know where you’re going. You don’t know when anything you don’t know when your first scene is you don’t know when your third day and you don’t know when your fourth. You’re not supposed to be drinking. Usually I’m not a doctor so I’m not giving any medical information but a lot of people don’t drink and let’s say don’t even do drive thru or whatever because they don’t want to ruin their psychology. You know, marijuana can cause problems documented. So if you’re not drinking, let’s say you go on the first day of your period, they get to go the third day, the fourth day seven you have to plan this around your work. Then you have to see how your body then you’re taking medicine to increase the egg. Whether you’re doing an IUI or an IVF it does add medicine so you don’t know how the medicine might keep you up at night. You might be sleeping, you might be bloated. Then you have to do a retrieval which is like a half a day off because you’re under anesthesia and so you don’t know if you could go away because you don’t know is there going to be on the 14th or the 16th but you have to find out am I doing a transfer Am I can’t bring the embryo back to me and am I gonna rest take it easy those days that I have to wait two weeks or a week and a half to find out if I’m pregnant or not. And then I might be a little bit pregnant

and then I might not I mean I don’t even taking over your entire life.

 

P: Yeah, yeah, that is dramatic. 

 

I’m gonna start my conversation with Amy here. In her book, the training game. She shares an anecdote that illustrates the challenge of living life while on the short IVF leash. She writes, Sal and I were headed to a small college town in the Catskills, where we’d sometimes holed up at a cheap motel in the woods go for hikes by day watch the waterfalls, and drink local wine and beer in the pub is by night. I probably wouldn’t be drinking too much on this trip. Read at all, as we were in the middle of an IVF cycle, but it was still wonderful to have a little break. I promised myself that for the next two days. I wouldn’t talk about IVF about how many follicles were currently colonizing my ovaries. About what kind of side effects I was feeling from the meds. I would spend the days after my transfer so it would result in a better outcome the second time around. No, I wouldn’t fret over my past losses my lost time the embryos on ice, the feeling or itching to start and the life we were yet to begin. I was gonna enjoy the stunning palette of fall foliage, the unseasonably warm weather the vast fresh outdoors and my relatively new husband. I was gonna live in the moment and enjoy our freedom. And then we got the call. Hi, this is Kallie said a woman who I belatedly recognized was calling from my fertility clinic. The doctor would like someone to come back tomorrow. Tomorrow I said so loudly that Solomon clutched the wheel. Tomorrow, she repeated. There’s been some mixup with the results of my latest monitoring and they weren’t check my eggs again to see if perhaps they would trigger me ie give me medication that would force me to ovulate the next day so they could do a retrieval. Tomorrow. I said again, there would be no break. No hiking no motel. No not thinking about IVF the only foliage we were going to see was on the way home. Solomon had already turned the car around even before I hung up. Both knew I was heading back to the fertility clinic the next morning. 

 

To hear how Amy’s story ends. Part two of our conversation will be available next Friday. Thanks for listening. If you liked this episode, feel free to like and subscribe. I appreciate Amy sharing some of the challenges of this experience. I look forward to sharing these inspiring conclusion next week.