After the Negative Test: So Now What?

In this heartfelt episode, Lana Manikowski opens up about her deeply personal journey through infertility — from years of hope and disappointment to ultimately redefining what it means to live a fulfilled life without children. Lana shares how she turned grief into growth, creating a space for women who feel left behind by infertility treatments that didn’t end in motherhood. Join us for an honest, healing conversation about identity, acceptance, and finding joy after an unexpected ending.

Transcript

Lana Manikowski: 0:00

So there was a lot of guilt and shame also for Feeling jealousy towards my friends who were having kids and not wanting to go to their baby showers or other birthday parties for their kids, and even like buying presents for their kids birth presents. And I thought, my God, like, am I going to spend the rest of my life being this person who just can't be happy for other people.

Unknown: 0:29

Welcome to perinatal and reproductive perspectives. This is a podcast where we empower birthing individuals, partners and health professionals with evidence based insights, holistic strategies and relatable stories. Hosted by a health care expert, this podcast fosters understanding equity and growth in perinatal and reproductive health. Here's your host, Becky Morrison gleed.

Rebecca Gleed: 1:01

Welcome everyone to another episode of perinatal and reproductive perspectives today, we are very lucky because we have Lana manakowski, she is an infertility advocate coming to us all the way from Chicago. Welcome to the show.

Lana Manikowski: 1:17

Thank you so much for having me. I'm really fortunate to have people welcome me into their spaces and talk about something that I shied away from talking about for so long after my journey ended,

Rebecca Gleed: 1:32

I think a lot of folks are in your shoes with shying away. It's something that's often taboo talking about fertility journeys, you know, childlessness. So thank you for being here. Let's open it up. Tell us a little bit about yourself, who you are, what you

Lana Manikowski: 1:49

do. Well, I live in Chicago, and I have a beautiful Ozzy doodle named Coco. She is my fur child, and I've been married to my awesome husband, Jack for 16 years. So you can do the math. I got married at 35 I'm now 51 and when I got married, I just assumed that I was doing everything in the right order, that my body would just get pregnant when I was ready to get pregnant, I think is probably the best way to put it. And after a few years of trying, it was actually a friend of mine who, I guess didn't really talk about it much, but she had had both her kids through reproductive interventions. And I remember I was grocery shopping. I remember I was in the cracker aisle. It's like some of these things just are so vivid in my brain, and I remember her asking if Jack and I were thinking about having children. And I said, Well, we've been trying. And I was at 37 at this point, so it had been a couple years. And luckily for her asking me that question, it really got me thinking like, Wow, maybe I should be concerned. So we had a really lovely conversation, and she lives here in Chicago as well, and she referred me to the fertility doctor that she went to, and I got a diagnosis at age 37 of unexplained infertility. So that is where my seven year journey through all things, including IUI, IVF, Reiki, acupuncture, I even remember sitting on this energy mat that was supposed to help regenerate the energy in my body. So really, I feel like I tried all things to achieve my goal of motherhood, but at the end of our journey, we never once had a positive pregnancy test or really much to show for all the efforts that we put into it.

Rebecca Gleed: 3:56

Thanks for the summary. I'm hoping today we can take a deep dive, and thank you for coming on to share your story. So many people that I personally work with have gone through IUI IVs, you know, sat on those energy mats with the hope that they will have a live birth. And so many times that's not the case. And then coming back to the unexplained, which I think is particularly difficult, is tell the audience what that means to have an unexplained diagnosis.

Lana Manikowski: 4:31

So from how I understand it, it's that there's no pointed condition or issue. So no endometriosis, no PCOS, no blockage in the tubes, nothing that they could really pinpoint would be a diagnosis that they would then treat in order to see if that would be a resolve for my infertility.

Rebecca Gleed: 4:55

Yeah, and your husband was also tested.

Lana Manikowski: 4:58

He was yes. And. I vividly remember the day he was tested. He dropped off the sample and high fived, or the lab person who collected the sample high fived him. And I don't know why that was just like a vivid memory in my brain of maybe being like, Yeah, buddy, and me being like, oh gosh, like, it's my body, like, it's all my fault. How

Rebecca Gleed: 5:27

did you experience that? I think

Lana Manikowski: 5:29

that was really the underlying soundtrack. I would say, if I were to try to find a way to explain it, that it was something that I did wrong. And while my husband, you know, that was not to paint a picture of him not being a supportive partner, I was so fortunate. But it was just a male person working in the lab that, like did the high five. And you know, for me, it was just the soundtrack that I should have tried sooner. I should have gotten married sooner. I shouldn't have been so focused on my career. I shouldn't have waited two years before even going to seek treatment at a fertility clinic. So and then once the treatment started, then it was like, oh, was I 10 minutes late with my injection? Did I not relax enough? Did I not pray enough? Was I a bad person earlier in my life that God is now punishing me by not giving me a child? So it was this constant reverberation that this was all my fault, or that this was something that life was giving me because I wasn't deserving of motherhood, I

Rebecca Gleed: 6:41

hear this so often, this internalized messaging of, somehow I am at fault. It's my body. I'm to blame, and for someone listening, what would you tell that person who has that same soundtrack?

Lana Manikowski: 6:58

I would just tell that person to give yourself the love that you deserve right now. I mean, this is such a time where we need nothing more than compassion and self love and the tearing yourself down. I know that it seems like a natural route to go to find a reason or find cause, but it's not going to help you have the emotional stability and energy that you're deserving of during this really unpredictable and really probably the most difficult part of your path that you'll ever have been on.

Rebecca Gleed: 7:37

I wrote down energy and stability, and maybe throughout this episode, we can pepper in some tangible takeaways for listeners. How do they keep energized? How did they maintain stability in something in a experience with unknowns and question marks and bumps and uncertainty?

Lana Manikowski: 7:58

I think I wish I had answers when I was going through because I realize how much of the journey not that I ever think it could be a beautiful experience. I think no matter whether you end up with a pregnancy or not, it is a very grueling thing to go through. So the best advice that I could give in order to preserve your energy is just to check in with yourself and recognize how hard you're trying, and recognize that you're doing everything that the experts are asking you to do. And I think if we allow ourselves to just release some of that need for control and recognize that this isn't our area of specialty, and we're following a treatment path or a protocol or some sort of directives from people that have studied this more than us, and let's allow ourselves to just trust in The process and know that there's somebody that's guiding us that has maybe more answers than we do, and that doesn't mean they have all the answers. And I think that's the other thing we expect, that if we do everything that the professionals tell us to do, then of course it's going to result in the outcome that we want. But medicine is not 100% either. So I think it's just allowing yourself to daily say, I know today might be hard, but I am just going to do my best to follow what I've been asked to do and not put this judgment on myself and not put any shame or blame on myself, because I'm doing my best, and I think it's also really important in hindsight, like when I look back at all the years of regret that I sat in, is recognizing that I'm doing the best that I can, and that if there was something more that was available to me. That I had access to or felt right for me at the time, I would have done it. And as we grow and as we learn, of course, we learn about different things and different ways and different methodologies and anything, not just fertility, but anything in our lives. And just taking yourself back to at that time, I did the best that I could. You did when you look back and live in regret for what didn't happen or how you wish things would have end up, it's not going to change the outcome, and it's really been process of learning how to see myself as somebody that worked really hard at that time, and forgive her, and really see myself in a way of like, How can I acknowledge instead of tear myself down for the things that didn't turn out the way that I thought

Rebecca Gleed: 10:57

absolutely I'm pulling out a lot of mantras of trust, the professionals trust as much as possible the process and doing the best that I can. And then there's a piece around forgiving that former version of yourself, and I would almost like go a step further and say, how do we celebrate her and acknowledge all that she did, if anyone can just go that step further and and really lean into the celebration, because it's, it's not a walk in the park by any stretch. And maybe that's a segue into, tell us, I guess, if we look at it from two pillars, the first being your assessment, diagnostic journey, and then the treatment journey. What was the process like from that moment in the grocery store until you actually picked up the phone, and I'm assuming you called some type of fertility clinic or a reproductive endocrinologist. Tell us about that kind of space between the grocery store and consulting with an REI.

Lana Manikowski: 12:04

So I think in the beginning, there was some level of comfort that I knew someone who had successfully been treated by this doctor. Had two children that I knew, and you know, was part of their lives. So there was sort of this like, Okay, I just might need a little bit of help, but we're gonna figure this out. And then going in for that first appointment and having all the baseline treatments done and diagnostics done, I would say it wasn't until I got the diagnosis of unexplained infertility that I was kind of like, Uh oh. Like, what do you mean? I'm unexplained, and I think that's where the whole fear that this might not be as easy as I thought, that it might not be a given if I'm somebody who the doctors, from the onset, can't even start to figure out for

Rebecca Gleed: 12:57

sure, this unexplained piece well. And what was that like? Because we say, Oh, we were just diagnosed, but we're talking blood work, right? Vaginal ultrasounds, we're talking

Lana Manikowski: 13:10

hysteroscopies, making sure there's patency in the tubes, making, you know, the tubes are open. So I remember, I ended up going to a second clinic after going to this first one, which we can talk maybe a little bit later about the transition to that. But I remember there was so much blood work that they took, like, I remember passing out because I think there was like 12 vials of blood, and it just was like this thing that it was just like, Oh my gosh. I just, I didn't have the energy anymore, or, I don't know it was, there was like a severe drop in my energy levels. And I just remember, like, passing out, because it's a lot, and it's, it's not just like someone putting a stethoscope on your chest and listening to your heartbeat. There's so much more to it, but it was really getting that diagnosis. And then I should also say I worked for 20 years in the medical field, and my husband's also in healthcare. So there was part of me that was like, Oh, well, I have connections. I know so many doctors. I've worked with surgeons for 20 years. Like, for sure, I'm going to figure out how to get this worked out. And it was this later realization that no matter who you know, and no matter how much respect you have from other people, or how much your doctors like you, and how many referrals, personal referrals, like hey, take good care of Lana, like we've worked with her. We know her all these things like that part of my life, like I wasn't prepared for those things not to play a role in my success and my outcomes. And it was really hard to separate being a very success driven person who knew how to achieve. Knew how to create a goal that even if it was a very far stretched goal, being able to figure things out. And it was the first time in my life, after getting this infertility and unexplained infertility diagnosis, that it became apparent to me that I was not able to figure this out on my own, that this might be the time that the goal I have for myself might not be achievable. That

Rebecca Gleed: 15:29

sounds so hard to be someone who can creatively solution and network and then to just sit in this unknown. And I think you also highlight something important to share, which is, this is not unique to Chicago. This is not unique to the United States. Infertility and unexplained infertility is a global experience. This is a human experience. And so I hope we can shed some light on it affects a lot of people globally.

Lana Manikowski: 16:00

It does, and I again, a lot of people don't talk about infertility. This is why I am so proud to be on this side of the camera with you. Because, had I heard other people talk about a diagnosis of unexplained infertility, or that you can leave a fertility journey without a baby, maybe I wouldn't have felt like the spotlight was on me as somebody who was an anomaly, and it just felt like I never even heard that diagnosis again after having been working in medicine for 20 years, and then be like, Oh my Gosh. Like, I don't know anyone who went through IVF and didn't leave with a baby, and all my friends that had gone through were in air quotes, successful at it. And how could I be the one? Again, back to that self judgment and that self shame of, like, Did I do something wrong? Like, I'm the cause of this. So I'm really fortunate to have done the work that I've done to be an advocate for people and help them hear their story, hopefully through my story, because I know how isolating it feels when all these terms are being thrown at you that you never even knew existed. And I remember going on the I can't even remember what platform it was, because keep in mind, I started my fertility journey. It was 2011 so this was before Instagram and and the support that some people have through social media. But it was like these chat rooms and all the two week TTW, TTC, all these terms that I was just like, Oh my God. Like these people are just throwing these terms around. And I'm like, still trying to figure out what my diagnosis was. So then I even felt like it. I needed to educate myself in order to be part of a chat room where people were going through the same things that I was. So it was just a very isolating time where I wish I had been offered more support resources in the field of mental health. And I remember having a meeting with a psychologist upon the beginning of our fertility treatments, and I imagine it was just to make sure that we were psychologically sound to start treatments. But never, through the rest of my seven year journey was I ever offered a therapist or a social worker or anyone to talk to peer group, absolutely nothing. So I think that's a big void in the system as well, is that when we're not offered it, we oftentimes think it doesn't exist, or that we're needy patients if we need something that isn't part of a protocol, when we start something as traumatic and as unnerving as trying to get assistance to have a baby.

Rebecca Gleed: 19:03

Yeah, and I love that we connected, because we absolutely share this piece of advocacy, awareness, education and this psychological we're just tapping into some of the new research that Infertility can be as psychologically distressing and traumatic as a cancer diagnosis. So this is not just nothing. This is highly psychologically distressing. And we don't just live as an individual. We're living in relationships and systems. And it affects more than just us. It's it has tentacles, and so I love that we are we're going there today, but let's go back into you're going through these assessments to the point of passing out from blood draws and all of the testing. Is there any like memories you would want to share around that assessment diagnostic piece before we go into the treatment recommendations? I. I i

Lana Manikowski: 20:00

think it was just that, like, Oh, shoot. Like, so now, what which has become the basis of all the work that I do? Like, what do I do next? Like, who's my confidant really in that? So I think for me, it was never having anyone in my family or in my close circle that I felt like I could call to share this information with and my friends that had gone through fertility treatments. I mean, they were good to a point in the beginning, I think I needed those pep talks and the like, oh, they figured it out, like they had the baby, like all that. But as my journey ensued, and my retrievals and my transfers and things like that weren't turning out with a positive pregnancy test, it became harder to associate myself with them, which we can maybe get into but really, I think it was just that beginning part of getting that diagnosis and thinking of myself as unexplainable. Yeah, I

Rebecca Gleed: 21:04

really hear you with that was the biggest kind of takeaway of, oh no. So now what? And this unexplained piece sounds especially hard and difficult.

Lana Manikowski: 21:14

Well, I was just gonna say it's and I don't know. I think we as women all are very goal driven. And I don't want to isolate you know that people who aren't goal driven don't go through this too, but I think again, it was like I had all this evidence in my past of being able to figure things out, not that everything came easily for me, but just being a very resourceful person, knowing how to get answers to questions, knowing you know who I needed to know in order to achieve the next thing I wanted to achieve in my life. And it was really a shaking place to be to realize that it doesn't matter who you know, what you did before, how successful, how much money, how great your marriage is like, who your family is like all you know, it didn't matter, and it was, I think, something that I needed to see as a human as well, that I had to rely on myself and the self trust that I needed, that I didn't know how to tap into during that time in my life, which I now see as somebody whose outcome didn't turn out like she thought. Seeing how I can rebuild that self trust within me is something that I wish I knew how to tap into earlier in my journey, because it probably would have made the I would say, the pursuit of it again not easy, because I don't think any of us should expect this to be, oh, a walk in the park, but maybe a little bit more self compassionate,

Rebecca Gleed: 22:49

yeah. How do we translate that into everyday life? Of what self trust and self compassion actually looks like and sounds like? I

Lana Manikowski: 23:00

don't know that really we're born to have self trust. I think a lot of it goes back to how we're conditioned to think that we need more than ourselves to believe in something or to see ourselves as successful. We always need the chitter chatter of validation from other people. And yes, it's great, and I'll take that any day, but I think there's such an importance of seeing yourself, especially in a journey like this, and saying, You know what, like I'm here with you. We are going to get through this and talk to yourself as though you are outside of yourself, like you are talking to your best friend. And I had so many moments where I wish I knew the power of mirror talking like I do that now all the time when I am at a crossroads, when I'm doubting myself and wondering if anyone is listening or anyone cares about women who aren't a success story in air quotes, again, I see so much value in talking to myself in a mirror and being like we're going to pep talk you through this. And I want you to see you, even if no one else sees you. I want you to know that I see you. So I think those are some really important things of self recognition and doing something as simple as like waking up in the morning and writing down three things I like about myself. And they don't have to be you know that you climbed Mount Everest. It could be something as simple as you look really cute and green, like, green is my color. You can see I'm wearing it here, but something that just allows me to see myself. And I would highly recommend people just taking a moment of self recognition, of saying, You know what? That was a really hard thing to do today. And I think it's really awesome that you made it through. I know you still. Mold. I know it was like uneasy for you to talk in that crowd, or to walk in a room where you didn't know if you'd be the only one without kids, scenarios like that, and just be like that. Took a lot of guts. I'm so proud of you for doing it anyway.

Rebecca Gleed: 25:17

I wrote down, recognize, validate and affirm. If we can pull out to make that tangible for the listeners. I'm just thinking about if we reflect on that person, Alana, doing 12 vials of blood. Like, what a badass. Like, go you. You did that. Yeah.

Lana Manikowski: 25:35

And I look back now and I'm like, gosh, I'm so in awe of the fact that I and so many others like we continue to show up to something month after month, year after year, not knowing what the outcome is. But because we are that dedicated to achieving something that was really important to us, I think there is also skill we need to learn of listening to ourselves and saying, when is enough enough, because there's no one, I think also that is telling us that, and that is something that I don't live in regret, that I did seven years of fertility treatments. I don't regret one minute of it, because it allowed me to see this version and create this version really of myself, because I had to redefine who I was as a person, or who I thought I was going to be as a person in my future. And I don't live in regret, and I would never talk anyone out of going through IVF like I'm always very clear with people on that, but I also think that there is a part of us that needs to hear what we're seeking, and when we people are often like, I just don't know if I'm ready to stop. I don't know I'm at a crossroads and really learning how to tap into that inner voice that we have as women again, that we aren't trained to think we can fully trust because we oftentimes are told that everyone knows better than we do

Rebecca Gleed: 27:12

absolutely in calming and quieting those projections of other people or outside expectations, you're right, And I'm really glad we're giving space to this idea of deeply personal to define when you've hit that point of this is enough. This is my stopping point, or this is my pause point, or this is my pivoting point. It's such a deeply personal process, and that's okay.

Lana Manikowski: 27:38

There are people, and again, this was not my experience, but there are people who have told me I felt like I was getting strung along by the fertility clinics to keep doing more. And you know, that was not my experience. When I got to the end of my journey, it was basically my option to choose what I wanted to do, and that's when I really tapped into that inner voice in myself to say this is the decision that we're going to make. And of course, you know, jointly with my husband, we were very much a combined unit, and we made that agreement, actually, if we can go back to that early visit where I got my diagnosis of unexplained infertility, and they talked about what IVF would be like. We my husband and I went into it jointly, saying that we will respect one another's boundaries of what feels right as far as reproductive interventions. In the beginning, my husband was not up for doing IXI, and he was not comfortable. He wanted there to be some sort of natural meeting of the sperm and the egg. And at the beginning parts was like, you know, I'd really rather us have some different methods. So we started out doing IUIs, because that felt like there was some sort of natural connection to create that baby. You know, that didn't stand that decision point was not forever. You know, we reevaluated, and we're like, okay, that sounded great, but we need to now become, you know, more integrated in the ways that we are going to try to create this baby. I think the conversation piece with my husband. We wanted to be respectful. We didn't want one person to be like, Oh, I'm not for this, and the other person be like, Screw it. I'm doing it anyway, because we knew that that wasn't the type of relationship that we had formed with one another. But also it was taking the moments to stop and reevaluate and say, Hey, I thought I was against this, or I thought I didn't want to do this, and we're going to re chart that course. So I think there was a big communication piece. When you asked me earlier about that first visit and that diagnosis, that was a big part of what shaped the communication piece of our journey for the next seven. Years.

Rebecca Gleed: 30:01

Yeah, so for listeners who don't know what an IUI is, it's an intra uterine insemination. How did you experience that? What was that process like for you?

Lana Manikowski: 30:12

So that was less invasive than doing IVF, which is got a lot more medications, a lot more injections. It was more so an oral medication called Clomid that would help you hyper stimulate. So there was a lot of bloating, and hoping to kind of create some more follicles, some more follicular activity. So I there was some hormone drops and jumps and and all of that, and then just one shot that I would do right before they were about to do the sperm injection. So that was, for me, not as invasive as doing IVF, but there was some hormonal responses to the medications. But again, it's more so a way that they inject the sperm into your uterus, so that they you have all of these follicles that hopefully one of them will fertilize. And it's more of a natural, if you will, bonding to hopefully get pregnant. And so we tried several of those, and we got, just got to a point where nothing resulted in a pregnancy. So that's when we moved on to IVF, which is more of a invasive route with medications and everything's done in a lab.

Rebecca Gleed: 31:32

Yeah, tell us more about your IVF experience. So I did

Lana Manikowski: 31:38

two rounds here in Chicago of IVF. And keep in mind, I was at that point closer to 38 by the time I was done, because, you know, I'd got that diagnosis at 37 and it's not like you just start tomorrow there. You have to make sure your cycle is in the right spot, your menstrual cycle. You have to, oftentimes go on the pill to suppress your cycle. So there's some prepping that goes before you can actually start a fertility IVF cycle. So it was very overwhelming to see how many medications I had to take. I remember I had to go to a specialty pharmacy because it's not like you just go to your down the street pharmacy. They don't often stock all of this stuff. It's also very expensive. My insurance, even though I worked in the medical field, my insurance had a lifetime max of 10,500 coverage for fertility treatments, which I was absolutely shocked by. I just assumed it would be covered. And the medications, I remember themselves being about $8,000 in medications. And yeah, so it was like ordering the medications, getting the protocol, making sure I had timers. You know, this was early days of cell phones. Keep in mind 2011 so it wasn't as easy as like, setting multiple timers on your iPhone, like we can do today. So there was just this whole change in my daily life, and having to go, you have to get your blood work done regularly in the early parts of an IVF cycle. So I'd have to go in the mornings for blood draws. Then a couple days later, I would go for ultrasounds to see our follicles growing. And so it was then more regularly with the ultrasounds to see, you know, do you get to a point where you have follicles big enough that they're actually going to do something called a retrieval, which is done under like a twilight anesthesia, and you have to have a follicle big enough at a certain size for it to be worth a retrieval to actually, you know, take it out, then put it in a lab, take the sperm, inject the sperm into that follicle, and hopefully have a fertilized egg. And then you don't really know if the egg is growing if it's healthy enough for implantation, usually at the fifth day of it being in the lab, they'll decide whether it's something that is worth implanting. From a health grade standpoint, we did what we call a fresh transfer. Some people will freeze eggs and stock enough up that hopefully they they have some healthy ones to then choose from, because you you sometimes have an option to get them genetically tested. But for us, back in in the days that we were early doing it, they did something called a fresh transfer. So we just put that embryo straight from the lab. At day five, it was healthy. I came in and they implanted the embryo, and I had the two week wait, and it did not result in a positive pregnancy test. So I don't know. Was it chromosomally abnormal? We did not have genetic testing done on it. So, you know, it's just kind of like a roll the dice and wait, type of thing. And later on in our journey, we ended up freezing an embryo. We only had one embryo that was made it to day five, that was healthy enough to consider freezing it. And then at the end of our journey, we ended up testing and it was chromosomally abnormal, so it would never have resulted in a viable pregnancy or full term pregnancy. So that was my only two experiences with having a embryo that was healthy enough to consider having either freeze it or transfer it. And

Rebecca Gleed: 35:33

I don't want to assume this was your experience, but as you describe this, what I hear from a lot of the folks I work with is it's all encompassing. It's tracking, it's medication, it's financially prohibitive from all of these different angles. It becomes your whole world. And so if you have a family or friend or a colleague who says, Hey, I'm going through IBF, it's not like one appointment and one one shot. This is your whole world. I don't know if that was your experience, but just how you describe it, it sounds all encompassing.

Lana Manikowski: 36:09

It is. And that was the part also that I wasn't prepared for, was even the medications and what's what. And yes, they had like, videos that you can go and, like, watch videos of how to inject it, like, but my husband and I were both, again, in the medical field, so needles weren't foreign to us, but it was still really like, Oh my gosh. Like, we have to do this ourselves. And so I can't even imagine someone who's never handled a syringe or drawn up medication from a vial, or had to know how to inject. My husband did all my injections in my belly, like, where to do it, how to switch it is there air in the syringe? Like all these things that for us was overwhelming, and I thought, oh my gosh, like, I couldn't imagine never having any sort of familiarity with these things. And then, yes, it was like we had to be home at a certain time because our injections needed to be done at a certain time. And there was times that I had to travel for work and then travel with my medication, and it has to be refrigerated, so I had to carry this cooler pack, and then going through TSA and explaining what I was carrying through and showing my doctor's note, and then sometimes having to inject myself if I was away from my husband, if I was on business. And then let's not even talk about the parts of your life that you put on hold and not planning vacations, not going to your best friend's 30th birthday in Mexico, because you're like, I really don't know where I'm going to be. Am I going to be in the midst of a cycle? Am I going to be pregnant? Am I, you know, who knows what? So there was so much of my life that I put on hold, and I think so many women feel the same, where you're just in this holding pattern of not knowing what's next, and it becomes a priority, and then also really feeling like you don't want to be social. You don't really, you know this is so consuming that it's everything that's going on in your life, but you don't necessarily want to go talk about it with the world. At least I didn't, because I was like, I don't want the world to see me as flawed. You know, this thing that most women are able to just do whenever they want to have a baby, they can just start trying and it happens. And I was so attached to this vision of me being a successful person that I was like, Well, I don't want to get into conversations and even tell people that I need assistance getting pregnant, because they're going to look at me like, oh, well, she's not as great as we thought, or she's not as successful as we see her as. And so I kept my fertility journey secret, really, from so many people, I didn't tell my manager at work for a couple reasons. I think primarily it was that fear of being seen as a failure. But also, am I going to get overlooked for a promotion because they're going to see, you know, oh well, she's not going to be around. She's going to prioritize a baby, or she's going to be out on maternity leave. So I felt like I kept so much inside, and really, my husband and I were the only two that knew the depths of what we were going through on a daily basis, because it was just too much to explain to the outside world.

Rebecca Gleed: 39:39

Yeah, I also hear this a lot of the consequences of sharing this and what that will entail. And for you, it sounds like, you know, will they see me as a failure, or somehow it's tied to success? And then a very real thing, whether you're pregnant or going through fertility interventions, is, how will this affect me as a birthing into. Individual, professionally, and that's a very real there is discrimination is alive and well, as you know, and this is something that we live with that unfortunately, the systems don't always support us.

Lana Manikowski: 40:13

There's even, I would say, discrimination as a childless person, that I don't know if we assume that because we don't have kids, we have to be the good colleague and cover if someone needs to leave early to take their kid to an orthodontist appointment, or if someone's kid is out sick, you're like, Oh, well, I'll cover for you. Sometimes I would see myself when there would be like a conference on the weekends, I'll be like, Oh, I'll work the booth, or I'll go to the conference. You probably have sports or family obligations. And while no one ever outright said, Well, you don't have kids, you should go, I just felt like it was my assumed role as somebody without children that I worked the extra hours or I covered for somebody on maternity leave. And I think it extrapolates beyond the biases of women who are, you know, mothers or women who are seeking parenthood, to also include women who are childless in the workplace.

Rebecca Gleed: 41:22

Yeah, you're absolutely right. This discrimination comes in so many different forms, and childlessness is not excluded by any stretch. Tell us about kind of the decision to discontinue fertility intervention.

Lana Manikowski: 41:39

So I started the treatment journey here in Chicago at a university, a well known University, and when that transfer happened, that didn't the fresh transfer, that didn't result in a pregnancy, I had also done, you know, several IUIs with them. So it was probably about maybe two, two and a half years of seeking treatments here locally in Chicago, and I was just kind of exhausted, and I wasn't ready to say, I'm done, but I was also in my early 40s. I was scared, really, of like, how do I leave this feeling okay, feeling like, confident that this is the right decision for us. So it was about a year that I just sat in limbo. I never heard back from my clinic here in Chicago. I never got a call from them like to check in and be like, what did you decide? Is there anything we can offer you. So I didn't really feel like there was a reason for me to call them either I so I think it was just sort of this silence that I sat in, and it was my again, another girlfriend, not the one in the cracker aisle, but another one of my girlfriends who had gone through fertility treatments and started out here in Chicago and didn't have success in air quotes. I always have to say air quotes because I I hate the word success, especially on a podcast if you can't see because I think that we are successful, whether we have a child via IVF or not. So just a little clarifier about about my air quote comments. So it was my girlfriend, Teresa, and I remember again, exactly I was in my parked car waiting to go into a furniture shop. And it's funny how these things just are so vivid in your imagination, like these turning points in in conversation and experiences. And she told me that she was starting to go to a clinic in Colorado, and I had heard about it before. It was a more well known clinic because Juliana and Bill Rancic went there, if you remember, they were very public about their fertility journey. And my girlfriend, Theresa, said my husband and I went out and we went for an informational session. And it was just like a really nice vibe. It felt very holistic, and I think you should check it out. And so it was really her giving me that phone call that reignited my desire to try something different. And I think about like it was just that phone call. Like, had that phone call happen sooner? Again, not living in regret, but just seeing how sometimes it's that check in from someone or a connection point of some sort, is all we need to make that next step in our decision pathway. So I talked about it with my husband. We got some information. We flew out to Denver and had an information session, and it just felt like the right thing. And that's, you know, again, I did an extensive amount of workup. That's where I passed out from the 12 vials of blood. But. There was also, it was a private clinic and not a university. So one of the things that I had to do was do all this diagnostic testing, and I wasn't an automatic yes to become a patient they wanted to see. You know what my workup was like, what my hysteroscopy was like, they would do their own evaluations of, you know, did they see any endometriosis? Did they have any ideas that something might be present that maybe my other clinic didn't diagnose? So I went through that whole workup process again, and they accepted me as a patient, which in my brain, I was like, Oh, well, I must have a really good chance of getting pregnant, else they wouldn't have accepted me as a patient. So understandable that was, you know, there was this new igniting of, okay, this might work this time. And I really did, you know, I was very comfortable with the care. So it wasn't just that that allowed me to have that decision, but it was also a different, I would say, cadence to my day. So I would start out my early days of monitoring here, going for those blood draws and the early ultrasounds here in Chicago, and then when I got to a certain point, usually, like around day eight of my cycle, I would get the green light from them. I would hop on a plane, and then I would fly out to Colorado and spend the rest of my cycle in Colorado paying for my own hotel, rental, car, airplane tickets, the whole nine. So again, a big financial investment that was not covered by insurance. And then I did two rounds there. We intended to do three. One was canceled because I was doing my monitoring here in Chicago, and they just weren't seeing enough follicular growth to say, get on an airplane and come out. So here I had spent all this money on the medications, and then they ended up canceling that cycle, which I understand it happens, but it feels like a huge letdown when you're like, gosh, you know, I just spent all this time, all this resource, all this hope, and then to have a canceled cycle. So it was after that that we decided to test that one frozen embryo that I talked about earlier, which I had gotten from my first cycle from the Colorado clinic, and it came back from testing, and I got the call, because was Colorado. I was here in Illinois, and I remember I was at work. I was actually working in a cadaver lab, doing some research, and I came out of the lab, and you've got to take all this, you're gowning off and all this stuff off, because, you know, you're around cadavers. And I looked at my phone and there was a missed call from the clinic. And that's like, a big when you're going through fertility treatments, anytime there's a phone ring or a missed call from the clinic, you're like, Oh my God. Like, there's something. And so my doctor left a voicemail, and he said, I'm gonna leave you some news on this voicemail if you don't want to listen to it now, hang up and listen to it later. And of course, like, how do you hang up? You know, like, I just was like, I've got to listen. And so I was in Minneapolis, Minnesota, at a work event, and listened to this message to then find out that our embryo was tested and it was chromosomally abnormal. It had something called Trisomy 16, so it had three of the 16th chromosome. And the voicemail ended of with, I'm so sorry. I know how badly you and Jack wanted this. And I was away from home. I was away from my husband. I was around people that had no clue what was going on in my journey, except for one doctor that I was very close with who knew what was going on, and he happened to be at the same meeting, and I write about it in my book. So now what the first chapter of my book, I write about what it felt like to get that devastating news and to be away from your support system. And that was probably one of the hardest things I had to deal with acknowledging like, wow. Like, this is not what I expected. This is not the news I was expecting to get. Even though I had had so many disappointments through those seven years, I just had hung my hope on that one little embryo being my champion, and we had a follow up phone call with the doctor, and my husband and I were in our living room, and the doctor was in Colorado, and he said, you know, you can continue on with treatment if you want to do so, but just professionally, I need to let you know that with the results we've seen, it probably won't result in much change in the outcomes. So that was, I think he. His way of saying, We'll do more if you want, but it's up to you. And that was really where the conversation that I think allowed me to free myself from this constant hamster wheel of seeking parenthood through fertility treatments. So he said that same conversation, if you want resources with adoption or with a donor egg, like we can help you with that. Think about it and let us know. And we thought about it, you know, we knew that donor egg was not something that we were interested in doing, like from the onset, but we thought about adopting, but that's, you know, it's not an overnight decision, and there was never a conversation. Like, if you decide that neither of those options are right for you, like, call us back. We would love to support you with some additional resources, or we're going to set you up with a counselor or a social worker or a psycho. Like, there, had that been part of the conversation, I feel like I would have had a reason to call the clinic back, but it was like only if I was interested in a different pursuit of having a child or going down a different pathway to parenthood, that was the only support I could get from them. And so it was a really lonely journey, because there was no there was no resource, there was no conversation that you can choose to be childless and we will still support you, or we have mental health resources. And I remember like being so distraught and going to my acupuncturist, who worked at a like holistic office with other providers, you know, different providers for different sub specialties. And I remember going to her and be like, do you know a therapist I can go to? Like, do you know anyone? And feeling like, I just didn't know who to turn to, and she had given me the name of someone, and then after a while, I just, like, never called because I was like, Oh, well, they probably won't understand me anyway. They probably never went through IVF. They probably have kids like I had kind of talked myself out of them being a good fit. So that's really what propelled me to start doing more advocacy work and talking about the need that women have to be presented resources that are pre vetted, you know, and no fertility patient, I'll have clients that work with me as their life coach, that also see a therapist, or have gone through a couple therapists till they found the right one, because they're talking to a therapist Who's got pictures of their kids on a shelf behind them that's in the view of the camera, or they are continuing to talk them into pursuing parenthood and not allowing them to be seen as somebody who is discontinuing their treatment path to parenthood, or their journey to parenthood. So I think that it's a very nuanced thing that a lot of people don't realize, like those little things matter.

Rebecca Gleed: 53:07

Yeah, and I'm just thinking in 2011 this was not almost non existent, to be what we call pmhc is a perinatal mental health professional, which is through Postpartum Support International and then ASRM, the American Society for Reproductive Medicine has guidelines for who can kind of deem themselves a fertility counselor. But this is very, very new and hard to find. I think it was in 2018 I was still like one of three in the state of New Mexico. Just to give folks that statistic how hard it is to find and how under resourced this community is that it's like, okay, you're being discharged from the fertility clinic. Good luck with no resources.

Lana Manikowski: 53:54

Yeah, and they leave it up to you to like, think about it. Let us know. But in that conversation, if the doctors included, like, if, if none of these feel right to you, or if you decide to remain childless, although we know that's going to be a hard decision for you, like, we still want to help you. Like, that is the part of the conversation, and the drop off of patients is huge that won't ever call back. Like, why would I call back for something that was never presented to me as an option? It was just in my brain. I would only call back if it was one of the things that they presented. So it's really important to me and why I'm involved in Resolve. I'm a member of ASRM for their mental health professionals group, I'm going to their meeting next month or next week to really talk about including that as part of your continuum of care, and with physicians when they talk to their patients, I just actually released a podcast episode last week where I interviewed a fertility doctor who I. Not only is a reproductive endocrinologist, she's gone through IVF, and she's also a life coach who supports other doctors who are going through IVF. So you know, she really understands it, and it was such a beautiful conversation, and also very revealing to the fact that they don't get training as reproductive endocrinologists for how to even have that conversation. They are grieving as our doctors that they couldn't help us achieve what we came to them for. Yet they're not trained how to grieve this loss that they see as our physician and also support the patient who is grieving the loss of parenthood?

Rebecca Gleed: 55:41

Yeah, I love that. I actually interviewed an REI yesterday in a very similar position, and I was just struck by her compassion and empathy. But you're right, they're not provided that training, but I think that desire and effort and empathy is so palpable, but we can absolutely do better, and so hopefully this is a call to action for fertility clinics. Listening to this episode that man is really underscoring the need for some resources. Of don't just say call us back if you're going to pursue another round, but please give resources for processing this deeply personal decision and the future. So maybe that's a segue into you created a life with Jack like tell us about that journey and the process there. I'm guessing there may have been some raw transition or grief, or maybe some excitement too, about what the future held and might look different?

Lana Manikowski: 56:41

Well, it was two years of really bumpiness, I would say. You know, in 2018 is when we had that final conversation with our Rei. And it wasn't until the pandemic that I my life slowed down. Operating rooms were only doing emergent cases. They were trying to keep you know the ORS clear for patients that had covid needs. And I was for the first time, not running out the door at 6am and working late and buffering my life away. And it's like, without my job, I didn't really know who I was, and I looked in the mirror, and I just felt like I had turned into this shell of me. I didn't really see who I was when I looked in the mirror. I just really missed feeling connected to myself and to my life, to my marriage, to my friends with kids, my husband as beautifully connected as we were throughout the whole process. I remember sitting at the dinner table some nights, and we had this beautiful home and this kitchen that we had bought this house thinking we're going to bring kids home to it and gutted the kitchen. You know, it was just like it was my dream home. I also write about that process of living in a house that you thought you were going to expand a family in, and I write about that in my book, because as so many of us do that, you know, we plan for this future that we think we're going to have. And I remember sitting in our beautifully remodeled kitchen and thinking, gosh, are we going to have enough to keep us together for the next 50 years. You know, once you get through the talk about, how was your day at work, how was this like what we were eating for dinner? And I just, I remember feeling such guilt, like, how could I be questioning the strength of our marriage after how much he showed up for me and how he was my rock through all of this. So there was a lot of guilt and shame, also for Feeling jealousy towards my friends who were having kids and not wanting to go to their baby showers or other birthday parties for their kids, and even like buying presents for their kids birth presents. And I thought, my God, like, am I going to spend the rest of my life being this person who just can't be happy for other people? So the pandemic for me was really the wake up call that I needed to say, like, Okay, we got to figure out what direction is this ship sailing, and is this the direction I want to be in? And and I would say my my biggest turning point was working with a weight loss coach. I had gained a lot of weight after my fertility treatments or during, but also after. And a lot of it was like, Oh, it was the hormones. But it's like, okay, it's been two years. Like, Was it really the hormones? What I'd failed to recognize is how I just had this anger towards my body. I didn't want to work out. I was like, who cares? My body doesn't work anyway. I was on what I call a supplement strike. I didn't want to take any supplements or put anything in my mouth or my body, because all of that, all my. Supplements were in my IVF drawer that was still there two years later, and I just didn't I knew the drawer was there. I just didn't want to open it. So I really had given up on my body. I was really angry at my body that it didn't work for me. It didn't show up for me. So it was working with this weight loss coach who was a life coach, which, frankly, I didn't really know much about life coach. I knew coaching, I just I knew it was a thing, but I always saw it as like a corporate coach. Maybe it was the way the coaches that I had been exposed to in my corporate life, and she was really the first person that allowed me to know that I could rewrite a story about myself. And I think that was like when the light bulb went off that I had just assumed that when you're childless and when you wanted something so badly that you couldn't achieve, I had no choice but to be disappointed with my life. And no one ever told me that that didn't have to be my case forever. And that's when I was like, wow. Like, I wish I had known this sooner. I wish somebody had taught me the sooner. I wish someone told me that I had agency in choosing how I feel in certain situations and how I show up, and that I can say no to birthday parties for my best friend's kid and not feel guilt about it, that I could put my feelings and my needs first. And it was just like a trickle effect. And I remember people being like, Oh my gosh. Like, you are glowing. Like, what is going on? You are glowing. And I kept hearing like from unrelated people in unrelated circumstances, that term glowing. And for me, I always think of glowing as a pregnancy glow. And I thought to myself, how like, how amazing that I have this glow, even after not having this thing I wanted so badly. So I was like, I've got to figure out how to bring this type of work or awareness to women who are childless after infertility, because it was changing my life and rapidly. And it was like, wow. Like, I didn't know it could be this easy to see myself in a positive light, and that was in September of 2021 I started my podcast, and in October of 2021 I finished a year long coaching program that I had started during the pandemic. And really just decided, like I need to let women know that you don't have to shrink away and just like, fade off into the sunset for the rest of your life, even if your dream of motherhood didn't happen.

Rebecca Gleed: 2:02:53

So what was that title of the chapter event for you? You restoried something? What was that title?

Lana Manikowski: 2:02:58

It was? So now what? So now what? Yeah, and not from a place of desperation, but a place of like. We got so many things to do, like, so now what? There was a point in my life when it was like, the dread of so now what, and the transition and energy of like, what's next?

Rebecca Gleed: 2:03:22

So tell us now, like, what that means to you. Like, what are you doing? What can we celebrate? How can folks tap into the incredible, magnetic work that you're doing?

Lana Manikowski: 2:03:32

I think it's just looking at yourself and being honest. Of Do you like how you are showing up in your life? And I think that so many people just think this is how you have to show up. We don't. We're never told that we can decide how we want to think of ourselves or how we want to see ourselves. And again, we're so used to this narrative that has been passed down to us of how things are but question like, Is that how it has to be? For me? It could be that way for that lady at church who's angry and bitter and never nice to anyone and doesn't have kids like that doesn't have to be me, though. So I think it's allowing yourself to just be honest and be like, do I want more? And then understanding like, Am I willing to invest in myself? Am I worth an investment of paying a copay for my therapist? Like, it's just It blows my mind. How many people, which not from a judgment place, but they let finances prevent them from a life long opportunity for growth, and they say, I can't afford it. But can you really afford to allow yourself to spend the rest of your life feeling the way that doesn't align with who you really want to be? So I. Right? I think that a lot of us try to talk ourselves out of that, and it's not. It's I believe, never about the money. It's about the belief that you're scared you don't know. Am I gonna What if I don't figure it out? What if I try this and work with a therapist or work with a coach, and even with that, I'm not better. So I think a lot of women are scared to invest in creating this next chapter of their life that feels more connective and more purposeful and meaningful, because they're scared that they're not going to figure that out. Because we're used to having this evidence that we haven't figured out the parenthood part or the fertility part, and you just automatically say, Well, I probably won't figure that out either. So for me, it's really about allowing women to see their worth, and their our worth is more than how much money we make or what our title is or how big our house is, or what kind of car we drive like I used to all that stuff used to be very important to me, and in a time in my life, I felt very validated by the amount of money I brought home, because it told me that I did something well. But there's only so much of those outside reinforcements that can continue to fuel you, but it's when you learn how to fuel yourself and see yourself as a valuable contributor, not only in your life, but in the world. Is really the part of the equation that we oftentimes aren't given the roadmap to how to create that.

Rebecca Gleed: 2:06:42

How else can folks find you? You're you do coaching. You have a beautiful book. So now what at podcasts? How can folks find you and use your support

Lana Manikowski: 2:06:54

well? My website, it pretty much has everything on it. I also like to offer a beautiful resource I put together for women who are childless after infertility, called the top 27 things people say when you're childless and how to respond, which dovetails on that you can always adopt comment, because I would say that is one of the most common responses that a lot of us feel like a deer In headlights of how to respond to that, because there often is a lot of self judgment that we have, that I remember that too, when people would tell me things like, you can always adopt or pray harder or relax and it'll happen. There was a lot of this like, do they not know how hard I pray? Do they not know how much I tried to relax, but it's not easy. Or do they think I didn't want to be a mom bad enough if I said no to adoption? So I'd love to offer that resource. It's on my website. Lanamanikowski.com for anyone who feels like they need a little bit more footing on how to respond to the things that people say when you show up into a group and you tell someone you don't have kids, or someone asks how many kids you have, and you say none. And then also, we touched on the others Day brunch I started that it'll be five years this coming May, that I started the other's day, and that, along with everything that I've done, was just creating something that I felt like I really needed in my journey, but wasn't offered to me. I work full time now in the infertility space. I left my job about a year and a half ago to devote my time to really developing more for women and expanding the conversation for women. So I've been doing grand rounds at different fellowship programs, OBGYN residency programs, how to communicate with patients. I'm an advocate for resolve, trying to expand the reach that they offer beyond women that are trying to conceive. I want women who are childless to have something that they can feel is theirs. Anyone who doesn't have a child and wants to come together and meet other fabulous women who don't have kids and get to know each other for who we are beyond parenthood or motherhood?

Rebecca Gleed: 2:09:22

Well, thank you from you know one fertility person in the space, just trying to support and provide in any way that I can from one person to another. Thank you for the work that you're doing. Thank you for coming on today. This is Lana manakowski, out of Chicago, and you can find her on her website. Thank you so much for coming on

Lana Manikowski: 2:09:44

Well, thanks for having me, and thanks for the beautiful discussion. It means a lot. Likewise,

Unknown: 2:09:52

if you would like to learn more about how we can help, visit our website at perinatal reproductive wellness, dot. Com. And while you are there, check out the latest edition of our book, employed motherhood. We also invite you to follow us on social media at employed motherhood. Finally, if you enjoyed listening to the show, please subscribe and rate it. Thank you. I'm.