How this couple coped when their choices were taken away | IVF, Male Factor In

Okay, thanks everyone for joining us tonight. I have a special edition of Hope for Healing. I have two special guests here in, um, for Father's Day. I have Constance and Andrey Lewis, or Andrey and Constance Lewis, whichever one you want to say. I have the Lewis's here joining us tonight, um, to talk about their infertility journey. Constance was a contributing author to Infertility Success: Stories of Help and Hope for Your Journey. And of course, Andrey was a big part of that chapter too. And we're just wanting to provide some perspective on, um, on couples going through infertility, how they can support each other, and what that looks like from each of their perspectives. So thank you so much for joining us tonight. Um, tell us a little, give us a little blurb about yourselves, guys.

Well, we've been married for 16 years, and that's exciting. And, um, probably a lot of you know this, but I'm a nurse practitioner in women's health, and I work at a private OB-GYN office, and then I have like a little side business going on. We have 2 kids now, as you probably will find out later if you don't know that yet. And spoiler alert, spoiler alert.

Um, well, thanks for having us on. Um, I am a pediatric dentist here in the Bradenton area. Uh, like she said, um, you know, 16 years, truly enjoyed our time, um, had our ups and downs, but We've been blessed with two wonderful children. So, um, you know, the journey is long and hard, but we— it's worth it. Totally worth it.

Absolutely. I think everybody agrees with that. Well, Constance, you named your— titled your chapter Struck by Lightning, right? And your, your journey, your as a couple infertility journey is just one that is So incredible. And tell us a little bit about how it started and what, what that looked like for you.

Yeah. So I, André and I waited to have kids like the responsible adults that do. We went through school and André and, you know, was in school for a while with, with dentistry and then residency. And then I was in school as well too. And so we're like, well, once he graduates residency, we'll begin our journey. And we have a house and we have a place that we're settled. And so we started that at 29. I was 29, he was turning 30, and we just thought, oh, we're just going to be like everybody else. We're going to get pregnant within, you know, 4 months. And here we are. So we started that journey and we were kind of a little busy with moving. So we weren't really like tracking things. We were just, you kind of in it. And then about a year to 2 years in, I met with an OB-GYN in the area and got some simple advice that most OB-GYNs give to you. Um, you know, have sex every other day, day 8 through day 21 of your cycle and see what happens.

And I was like, well, I'm kind of already doing that, but okay.

No labs offered, nothing like that. Um, and then, um, I switched OB-GYNs because I moved to the hospital and found one that was that was at the hospital. And, um, that's kind of where my journey of starting to investigate a little bit more started, was 2 years in. So it took about 2 years before we actually even found somebody to say, oh, let's, um, uh, do some blood work and see what happens.

Yeah. And I think that that highlights, um, so much of what we talk about in the book for self-advocacy, um, not only with your story, with my story, is that people often will say to me, Well, the doctor, if there was something wrong, the doctor would test me for it. Or if there was something wrong, wouldn't I have been referred to somebody else? Not realizing that it's going to be a very passive approach unless you are driving the, driving the, the, the bus, so to speak. Right? Yeah. Yeah.

Absolutely.

So it took you a while to get any traction in terms of testing And then once you did get tested, you got kind of some bad news.

It was kind of like a whole all-in-one together. We're going to do, um, you know, you know, um, Andre's gonna— we didn't even do the semen sample yet. So basically it was like, let's do blood work. And, um, then let's do, um, uh, a hysterosalpingogram. You know, we did an ultrasound, then blood work, and then hysterosalpingogram. I was like, okay. So we did the blood work, you know, on day 3. 3, and day, you know, all the days specific to the cycle. And I was told that everything looked normal. And, um, and then, you know, go ahead and schedule your hysterosalpingiogram. They're like, okay, great. Um, so we went to the hysterosalpingiogram. Um, the radiologist couldn't pass the catheter, very painful situation, very traumatizing. Um, and he's like, well, I can't get it in. You're going to have to go back to your OB-GYN. They're going to have to pass the catheter for you. And then you come back to our office and get the test with this catheter in you driving 30 minutes.

Right.

It's like a really great plan.

Yeah.

So, um, back to the OB-GYN I went and he's like, I can't pass this catheter either. And so at that point he was like, you know, you've had a long history of pelvic pain, um, that you've had for years, really bad periods, pelvic pain. Now I can't pass this catheter. There's scar tissue. There's something going on. Let's take you to surgery. You know, laparoscopy, hysteroscopy, stage 1 endometriosis, um, scar tissue everywhere in the cervix. Like, my cervix was curved like an S, like nothing could get in. He had to straighten it all out and clean everything out. Um, no problem, you look great. Most people get pregnant within 3 to 4 months after having this procedure. Everything's all cleared out, everything looks great.

Okay, I'm gonna stop you right there. How many years was it of having bad periods, misdiagnosis, misdiagnosis, both. How many years was that in total before you got to the point of the catheter, the HSG, and the surgery?

Yeah, so I always had bad periods my whole life. I mean, in high school, I would call my mom crying to bring me home because my periods were so bad. I couldn't even stand, like, I would have to walk around the classroom. I couldn't sit. You know, we went on birth control really— I went on birth control really early because they were just so bad that at least 2 days of the week I would miss school. Um, it was just really bad. The flow wasn't necessarily that— I mean, it was a normal flow, but the pain was just really bad. Yeah, so we went on birth control. I was just on birth control my whole, you know, young life because of that, and also prevention of pregnancy also. Um, and then when I had an IUD placed before we started trying to have a baby. It was the most excruciating, painful thing I've ever been through. And now looking back at it, it's because I had that significant scar tissue in my cervix and it was just shoved in there with no anesthesia. Yep. So that was kind of an inclination from the beginning when I talked to my doctor that there was something wrong with the cervix and there was scar tissue. But at that point, no, there was no other investigation. It was like, here's your IUD, go on, have fun. Birth controls helping control your periods. I had, I saw a GI doctor multiple times. I was diagnosed with IBS. I was diagnosed with, you know, we don't know why you're having all this chronic pelvic pain. It's in your head. It's IBS. It's interstitial cystitis. There was multiple diagnoses for 9 years before Dr. Sella, or doctor, took me back into surgery and found what he found. Sorry, name dropping. Didn't mean to do that.

Yeah. So in case you didn't hear what she just said, it took her 9 years as a medical practitioner to get a proper diagnosis. And she was told everything from you're crazy to it is something to do with your kidneys to something to do with your, or not your kidney, but your bladder.

Yeah.

Or your bowels.

My bowels. GI. Yeah. Yeah.

But never, nobody ever suspected that it was endometriosis. No, never, never even a suggestion.

And we did read studies about it because obviously going through nurse practitioner school and we have a lot of studies to read. Um, the average diagnosis of endometriosis 15 years ago was 9 years. Yeah. Insane.

Yeah. That's crazy. All right. So we've had the surgery. It's all, it's all good. André, this whole time you're watching your wife have, uh, in the beginning, very painful periods, you know, the, the frustration of going to multiple doctors and not getting much answers. What's kind of— what's going on in your mind? How are you feeling, um, witnessing all this and, and What are your thoughts while this is going on?

I think the toughest part for me is being with my wife for so long. She had always been, like I said, dealing with something and been through some tough things, kidney stones and even other just body problems. But to see her actually in pain for some of these other issues and then still not being able to truly take the time, you know, to truly kind of do some homework, do some due diligence. It's like we've crossed this, this, this line already, um, and so why are we going back calling it the same thing, you know? Why aren't we looking somewhere else? Why aren't we doing more? Um, you know, it's very frustrating. Uh, and then even being, you know, you know, a medical professional as well, but not in that field, you know, it's like When someone comes to me and they have a problem, you really want to try and figure out, look at all the things that are up front and then say, okay, now what have they done? Okay, let me see from a different perspective. It seemed as if no one really did that. They almost just kind of brushed you off. It was tough because all you can do is try and support your loved one as best you can. Um, but you know, the doctors unfortunately, uh, kind of rule the roost.

Yeah. And it's almost the theme of your whole, of your whole infertility journey, right? Um, just over and over again, this is happening to you. So, um, we're going to—

when I was told that the lab was normal, which we kind of, you know, skipped over that a little bit, is that I was told that my labs were normal. And when I went back to look at them a, like a month or two later, just because I was curious and I actually happened to be in my women's health class, nurse practitioner rotation class, and we were talking about fertility. I looked at my AMH level and it was not even close to being normal and I lost it. Lost it.

Yeah. Yeah.

Because I just, I just thought everything was normal and I was like, oh, okay, great. Well, I'll just keep moving on with my life. And then once I saw that, I was like, mm-hmm.

You know, what, what is even happening? Right. So let's fast forward just a little bit.

Yep.

So you get everything, everything meaning the endometriosis is fixed.

Yeah.

You get a clean bill of health as far as you're concerned. We're gonna fast forward to the reality that that was— that did not work for you, right?

All of those things, all those IUIs, all those other things that we did did not work.

Find a new—

find a fertility doctor. Yep.

Right. Okay. So we go from surgery to another period of time, do some IUIs. That doesn't work. In the meantime, you got Andre tested, right?

Yep. So his semen was tested and it came back normal.

Okay. But just for the normal stuff of motility and, you know, count and all of the above. And obviously they recommended Oh, okay, well, you can take some supplements here and there, zinc, you know, all those things, folate, to kind of help, you know, increase so the movement. Yeah, and the success. But, you know, they didn't do anything besides just—

well, they did a, they did a basic blood panel, um, like all the STDs, um, that they always do, just a basic general male blood plan.

Right. Now, did you have to ask for that or was that something that was—

Oh, they, they actually required it. We had like a checklist, so they did actually require that part of it for men. Okay, good.

All right. So you have entered into the infertility or the reproductive medicine world and are going for your first IVF.

Yep.

So you kind of, kind of check the boxes on the checklist, right?

Yep, we think so. So we go right in and we do the, we do the first round of, um, we knew I was gonna have a low egg count that was already known based on my AMH level. We got 6 embryos. We were actually pleasantly surprised. Um, they recommended a day 3, a day 5 fresh transfer. Um, and, um, they recommended putting 2 in, so we did it. Which is not the recommendation at all. If you know a lot about fertility, they don't recommend putting 2 in because you have an increased risk of miscarriage. And we weren't guided to freeze the embryos and test them genetically. So this happened twice, and then on the third round, um, say like we got 6 and then we got 4 and then we got 2. So 3 rounds, never frozen, never. Oh, so on the third one, they finally said, oh, you had 2 miscarriages, let's go ahead and send this third round of IVF, let's go ahead and freeze them and then test them genetically. But neither of them even made it to day 6 for testing at that point because I— all my embryos were gone at 6, at 4, and then 2 that I lost, right?

So you had diminished ovarian reserve, right? Was that an official diagnosis for you?

Yes.

Okay. So you were, had all these other complications. You knew that you had not very many eggs to work with. You weren't given all the information. They, they being the fertility doctors, did the same protocol 3 times in a row.

Yep.

And after that 3rd one, you're left with wondering, where do you go next? What, What was the next step for you?

Yeah, so after— so not only did they not tell me that my— the last 2 embryos that I had retrieved from my body, um, didn't make it to day 6, I had to call them and find out myself. I didn't receive a phone call. Um, that was something that was very infuriating to me, that nobody had time of day or decency to call and tell me, hey, your embryos didn't make it, that's why we haven't called you, um, so we cannot send them for genetic testing. And then at that time, that same conversation, the doctor said, well, you had 2 miscarriages. Let's go ahead and test you both for chromosomal. Let's do a chromosomal analysis. It's an easy blood test. I'll just order it for you both.

So I just want to highlight this again because you're both medical professionals.

Yes.

Okay. So I mean, I am— I'm driving this point home because I want anybody watching this to know This is the kind of, this is the level of advocacy that you have to do for yourself. Yeah. If you are, are going for procedure after procedure and they're not changing anything in the protocol, right? You're gonna have to be the one that puts a stop to it because, right. They are practicing what they practice, which is reproductive medicine. And until you put the brakes on, nothing's gonna change. Right, right. So, right.

Yeah.

So, and I also don't want to just gloss over, um, Constance didn't specifically highlight this, but let's just, let's just affirm the fact that she had 3 miscarriages because of not having these genetic tests. And that's what we say procedure and we're glossing over, but the pain that you went through after each of those cannot be, you know, cannot be denied. So I don't want to just, you know, Yes, it was gut-wrenching. And now we're to the end of it and you're done with your eggs, right?

Yes.

After you're done using all the eggs that they're able to harvest.

Yes. And my whole body, they're gone.

Right. Then the doctor says to you, maybe we should just do this simple— he actually said simple blood test, right?

Mm-hmm.

Yeah. So Andre, I want you to, um, talk about this part a little bit and tell me what happened.

Um, so yeah, I mean, as you mentioned with the miscarriages, I mean, you— words can't even describe how you go from up to thinking, okay, we got something, we're moving in the right direction, and then the loss. I mean, and coming out of those holes each time, um, and then doing the same procedure again, you know, that's the definition of insanity, you know, doing the same thing over and over again without the same result or with the same result. So, um, you know, it was very frustrating and I felt helpless because ultimately Constance felt like it was all about her. So for me, you know, I wanted to take some of that burden, take some of that pain. And ultimately, once the last eggs didn't come back and he says, oh, we can do this simple test and it actually came back as a positive, I guess, test as in— so I have something called a balanced translocation, which is where my 8 and 17 genes have actually swapped.

And— On the DNA chain.

On the DNA chain. And so sometimes when they swap, luckily for me, I am here and they connected correctly. But for most, most cases when this happens, they cannot connect correctly. So therefore you get a, some sort of defect. And so therefore then have a chemical pregnancy or chemical miscarriage or whatever you call it, genetic miscarriage. And so when we finally got those results, for me, I was actually happy. And it's crazy to say because it's something that, you know, why should I be happy that I have this genetic disease? But I was also frustrated at the same time. I was happy because Constance didn't feel like she was doing something wrong and couldn't do it by herself.

I was carrying all the burden, really.

Yeah, I was able to take some of that off her. But then I became infuriated because it's like, if it was so simple, why wasn't it done at the beginning? You took my sperm. You knew. Why couldn't this test have been done earlier? Because you already knew we were at a low egg count. So why wait if we know that these eggs might not even have a chance.

Yeah.

So that, that I think is truly where you, you need to advocate for yourself to say, hey, put things up front, tell me everything I know, need to know before we even get started.

And even if insurance doesn't cover it, because we know the state of Florida doesn't cover fertility, um, give me the option. Like, hey, this chromosome test could be $1,000. I don't know how much it's going to be, but we highly recommend it. Or put it in the cost of your fertility testing anyway. So, right.

Yeah. And it's negligent, you know, in, in my opinion, especially someone in your situation with a low, uh, egg count, you know, to not, not have that opportunity. Constance, I know that you said in the book, um, that, um, you were at your lowest point Uh, you know, after that last— after losing those last 2 eggs, not getting the phone call back from the doctor, and just feeling like Andre would be better off without me.

Yeah, right. Yeah, I had that conversation with a friend. Um, I went on a walk with a friend to walk our dogs around the neighborhood, and she lived here, and I basically told her, I was like, he would be better off finding a woman that can carry his children and that could have babies with him because it's all me. Like, clearly I have no eggs left. And, you know, that's what I told her, obviously, you know, that's how you kind of feel in that moment. And, and, you know, luckily she's a good friend and she was very supportive. And, but yeah, I was probably the lowest because, you know, the love of my life obviously is, is— I'm saying I want what's best for him. So that would be— and if he wants kids, I mean, obviously you're, you're very emotional. We could adopt. And he never ever said to me that, right? I'm kids with you. I'm, you know, I gotta go find somebody else, but that's just when you're at your lowest point, that's the things that you think.

So yeah, our goal always is to just make sure that people don't feel alone. And I, I just wanted to, I wanted to pull that out because it was such a profound moment in the chapter. Um, you guys, you have to read Constance and Andre's chapter. Um, but it's, it's common. That's, that's what I want people to know. Like that feeling, that feeling of devastation, utter lack of control. And you're just in your mind trying to think of work out a solution. And that seems reasonable when you're that low. So now Andre, you're in the other, you're in the shoes on the other foot for you. And now you're in a position of feeling like you've taken some of this burden on and now Constance, you switched roles with Andre, right? And now you're seeing his pain at having, you know, contributed to the part of the problem.

Yeah. And the funny thing about that is he was happy, but I was sad because I was like, I didn't want anyone to feel the way that I felt, right? As a Type A strong woman that I was raised to be, I was like, you know, this sucks and I know how it feels and I don't want anybody else to feel like this. Like, I can do this, I can handle this, I can take all of this on, which is what a lot of women feel when it comes to reproductive health and, well, having a baby in general, delivering a baby, having a baby at home, staying at home with the baby. Again, um, little, um, quote in there, um, plug for the new book coming out. But, uh, you know, so I was like, that actually made me sad that he now felt this way. Yeah.

In a way. Yeah. So we've talked a lot about the pitfalls, but as a couple, like you have really interesting perspective and I just wanna wrap up tonight with, yeah. What would you, what would you say to somebody? What would you say to a couple, um, you know, in a similar position about how to support each other? Um, Especially, you know, I, I want to hear your perspective, André, you know, with Father's Day coming up and kind of like how mentally that affected you. Like Constance and I know from the women's point of view, but we don't often hear from guys sharing how infertility affects them. So, um, tell us, uh, tell us a little bit about like, you know, what advice you would give to couples And then what's the cautionary tale that we haven't highlighted?

I mean, the best advice I think I would give to anybody that's going through this process and this struggle and, you know, is to know that there always is an end and you can fight for that end. You know, it's— there's always something that can be done. And even if it feels like that, that you've kind of hit the wall and hit at your lowest point, you can kind of climb out of that. You know, we— the advice I would give would be just to truly advocate for yourself. If you feel that there's a problem, or if you don't know there's a problem, just ask the doctors up front, look, I want every test run right now from the get-go, from the beginning, because we've already tried for a year. You know, whatever the medical community feels like, well, you have to try first for a year before you can be called infertile or go to a fertility specialist, I think is bogus. So You know, if you've been trying for that long, get everything up front, know everything up front, so therefore you can put your best foot forward and say, okay, we want to choose this route. We want to go this many times, not the doctor's choice, your choice, maybe 2 IUIs, maybe 1, you know, and if not, then let's move to the next step. If it's IVF, okay, let's move to that step. If it's then donor egg, or separate, you know, induction or adoption, adoption, um, you know, yes, whatever to get that kid. But if you really want that family, um, you know, then you can, you can make a family and it's gonna be a family, right? For me, Constance not being able to have kids herself, it— for me, I would have never change. My love for her would have never changed. You know, there was plenty of ways that we could still make a family together, and that's what we did. And luckily for us, it worked out even in a way that we didn't expect, because once again, with my sort of, you know, balanced translocation, the odds were against us. But we were able to, you know, take an egg we were able to make it work with my sperm, and Constance was able to carry like she's always wanted to do. And now we have two beautiful children because of it. So, you know, I mean, it's, it's tough. It, it takes a lot. But, you know, if you want it, don't give up for it. Don't give up on it. Love each other.

Yeah.

Yeah.

And my advice is that as a couple, you— it's something couples go through really hard things, and this is something really, really, really hard to go through as a couple. And I think if you know Andre and I, a lot of people are like, you guys have such a great relationship, your bond is so strong, you guys. And we are, and it's lucky that we are because it was— even between us, it was a tough road. And in the beginning, we didn't know how to support each other emotionally. We didn't know how to what to say to make each other feel better. We didn't know what words to use. We didn't know how to be there, how to provide that support. So there was a good 6 months to a year that we kind of struggled with that support, um, and we had to find a way to give it to each other, to ask for it. Like, what do you need? What do you— you know, we— you— so my advice for couples is that ask for what you need in that relationship for support when you're going through this. And if you need to bring in a mediator, as in like a therapist or, or, um, somebody to support you, I really highly recommend it because it is so mentally exhausting and mentally frustrating. And you're, you know, PTSD from all of the procedures that you go through. Everything in life that you go through related to fertility really affects your relationship, um, and even down the road it can. So find a way to communicate your needs with them in the beginning when you're— before you even start the journey. Like, okay, we know we're going through something fertility, let's talk about how we're going to support each other and our needs through it. That's kind of my big advice, I think.

Yeah. And not try to shield each other, right?

Yeah. Right. Yeah. Mm-hmm.

Well, Constance has hinted a little bit of what's coming next. Um, consequences of infertility and not, not dealing with it fully as you're going through it is a big fallout of PTSD. So we do have, um, Constance is contributing another chapter to another book we're going to have, um, coming in 2022, Infertility Success to Total Mess. And that is all about PTSD after the infertility journey, which so often happens. And so, um, you can read Constance's chapter now in Infertility Success: Help and Hope for Your Journey. It's available on Amazon or Where books are sold. We're available at Target now, which is kind of cool. Yeah.

Um, yeah.

Well, you guys, thank you so much for being on here. Um, sharing your story, being so vulnerable and, um, you know, just, just helping couples out there that just might feel like they just don't have any, um, don't have anybody to talk to, don't have any, uh, any other input, you know, that what they're experiencing is normal. So I really appreciate you taking your time tonight and, um, and sharing.

Yeah, well, thanks for having us. We really appreciate it. This is, um, like I told Erica, and I talk all the time obviously because we see each other, we did the book together, but, but really it's so healing to talk about it. It's— yeah, you don't really understand or realize like when you're in the moment because you maybe not— I didn't want to talk about it to anybody really in the moment. It was very, you know, most women don't, but it is very healing to talk about it, especially after the fact. Um, so just do that, you know, get more of a streamlined discussion so it's not so taboo or, you know, whatever that it is, but just talk about it.

Yeah. No better words. No better words said.

Yes.

Well, thank you so much, guys. Um, health and blessings to you, and we will catch you here another time, I'm sure, on Hope for Healing. Good night.

Good night.

Thank you.