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Isolated (Revisited): Podcast Transcript

Anita Rao
Hey, it’s Anita. Happy summer. We are about to listen back to the most-downloaded Embodied episode EVER, about the experience of male infertility. I hope you enjoy the episode, and I want you to stay tuned at the end for an update from two of the men you’re gonna hear from. Alright, enjoy the show.

It is now part of Embodied lore that the name for the show came to me in a dream. But the driving questions behind it flowed from years of observation that the way we understand our bodies has as much to do with facts and data as the stories we tell about them. And sometimes those two things are at odds.

Alex
Honestly, due to the false narrative that infertility is solely a female issue, I think we both expected any problem that we may have to be with my wife and not with me.

Anita Rao
Male factor infertility comprises half of all infertility cases worldwide, but you'd never know it from consuming fertility content through culture, media and even medicine. And if you never see your experience reflected, how do you understand what's happening with your body and figure out when and where to seek help?

This is Embodied, our show about sex, relationships and your health. I'm Anita Rao.

Jared Wright
You know — so I said, "Are there any resources for Black men or men who are dealing with this? Is there something I can read?" And my urologist — who was great — but he just said, like, no.

Anita Rao
That's journalist Jared Wright. He is one of millions of cisgender men of reproductive age in this country with a fertility problem. And fertility is clinically defined as not being able to get pregnant after about a year of trying. So, while Jared is statistically in good company, this journey for him has been super lonely. He and his wife Erica have been trying to conceive since they got married in 2020. Early on, his wife started urging him to get connected with urologists and get a semen analysis because his ejaculate was thin. He did — and was diagnosed with non obstructive azoospermia, which means there was no sperm found in his semen. He got connected with a urologist who specialized in fertility issues, and then visited his first fertility clinic.

Jared Wright
I walk in, I'm clearly the only Black guy — Black person, even — in the clinic. The patients were all white women. I just remember thinking, you know, there's nobody else that looks like me that is sort of here for that purpose, or at all. So, you know, I'm waiting to go in and they open the door. And I'm in a dark room, there's a chair, there's just porn up and down and like on the tables. And there's a TV with a DVD player, and I just looked around, I said, I am not touching anything in this room if I can help it. [Laughs]

Anita Rao
At the beginning of this — this journey you're obviously experiencing, you know, a lot of newness, a lot of surprise. And you begin to really talk about this with your doctors and start asking questions and looking on your own about resources for Black men experiencing infertility in particular. And your — kind of journalist curiosity brain began to light up a little bit. And you started to more formally research and report about this and talked with other Black men about their experiences of infertility. Tell me about what you heard from the other men you connected with in your reporting, and how that paralleled with your own experience?

Jared Wright
Well, the one thing I've gathered is, you know, a couple of these guys have much worse insurance than I do. And they're not in a position where they can go forward with the treatments that I'm going through, because their insurance doesn't really cover it. And it's way too much money. All those guys also requested to be anonymous. So I'm grateful they decided to take their time to share their stories with me, you know, but there's clearly a stigma. And you know, there's a lot of people that don't want to talk about it. And you know, for obvious reasons, which are understandable.

Anita Rao
Well talk to me about that, because those reasons may not seem super obvious to folks. I'm curious about what those barriers were and which of those that you experienced yourself.

Jared Wright
What a lot a few doctors I've spoken to and you know, these guys, they say that their virility and their ability to father children is important as a man. And myself, I felt like less of a man to be honest when I got my diagnosis. Especially when I see all of my friends — you know, of different races and shapes and sizes — having kids. And not only having kids, they can sneeze on their partners and automatically have a kid so, it's... [Laughs]

Anita Rao
Yeah, that level of ease.

Jared Wright
Yeah, right. When we first got this diagnosis, I initially told my wife, I'm like, " don't really want to be telling people about all this." And you know, my wife said, "Look, if we're going to live in the light, we're going to be very transparent. You know — we're not going to run from this, we're not going to hide from this." And, you know, a lot of the days have been hard, but I definitely feel a lot better — being a little bit more transparent about it, being able to talk about it, because like, when I first got diagnosed, I didn't see anything. So, if somebody wants to Google Black male infertility, one of my articles will come up. And so, chances are I won't really know about it, but I hope other people can see it and get something out of it.

Anita Rao
Since Jared and his wife started this process, they have explored many corners of the fertility industry. At one point, they looked into donor sperm. Jared remembers his wife coming home with pamphlets from the four major sperm banks in the country. And while they found hundreds of thousands of white donors, the number of Black donors added up to just 38. When Jared put on his reporting hat and asked the sperm banks why this was, they said, "When you find out, please let us know." Jared and his wife have also had multiple unsuccessful IVF cycles. The average base cost for one IVF cycle in the US is between $10,000 and $15,000.

Luckily, Jared and his wife live in New York, which is one of 14 states with an infertility coverage law in place that covers IVF. So they have had financial support, but they're coming up on the cap on their coverage, which means that the road ahead is a bit uncertain. For Jared, part of the IVF process involves getting sperm extracted directly from his testicular tissue, and a procedure known as a microTESE. On the day that we spoke his next microTESE was two weeks away.

Jared Wright
As much as you dot your i's and cross your t's, there's always something that gets in the way. Like my insurance — you know, we thought we had one additional coverage cycle before we had to eat into that cap. So that has — that's been really painful and been really difficult. But, you know, we're pushing through and you know, that's going to down the line probably affects how we handle some of these treatments. But — you know, that's okay. We're, you know, we're going to figure it out.

Alex
After about a year of my wife and I tried to conceive, we discovered that I have azoospermia or zero sperm. We were completely shocked and devastated. After that diagnosis, my self-esteem plummeted. Being diagnosed as infertile felt like I was stripped of one of the very qualifying descriptors of what it means to be a man. I felt embarrassed, ashamed and emasculated. I worried about what other people would think about me if they found out. I mostly worried about what my wife would think about me [after] realizing that I couldn't get her pregnant. Even in my safest and most secure relationship I didn't feel safe because I was so shaken up about my own identity.

Brandon Johnson
It's been about 10 years now, when my wife and I found out that we couldn't get pregnant. And it was due to not being able to produce sperm. In this case, I became extremely depressed and lost who I was. Everything I worked hard for, it didn't matter at the point when I realized I was infertile. I told my wife to leave me because I was feeling that depressed and that lonely.

Alex
Through our initial effort to conceive prior to my diagnosis, as anyone who's ever struggled with infertility will tell you, sex had become mostly about just trying to get pregnant. After my diagnosis, there was a time when I wondered: What's the point now? Not because I didn't want to, but because I worried that my wife wouldn't, since we couldn't get pregnant anyway. Or worse, that because of my diagnosis, she would no longer be attracted to me. My wife has been incredible through it all and helped show me that she truly loves me no matter what. It honestly was her love and unwavering support that helped me build back that confidence and knowledge of who I am.

Brandon Johnson
This experience was the toughest experience of my life.

Anita Rao
That was Alex, the founder of the Instagram account Pursuing Fatherhood. And Brandon Johnson, a therapist and owner of Infertility isn't Inferior. Social attitudes about infertility shape not only how people experience a diagnosis, but also whether and when they seek treatment at all. This is something Dr. Paul Shin has observed at the fertility clinic he works for in Washington D.C.

Dr. Paul Shin
I think it goes back to — just men's engagement with the health care system. So, women have menstrual cycles, they get periods, they get used to going to see the gynecologist on a regular basis. There's a comfort level with talking about reproduction that just doesn't exist for men. For a lot of my guys, their first real engagement with the medical system is an infertility diagnosis. And it's devastating on so many different levels. But there's that cultural perception that women have a more complicated moving-parts schedule, so it must be a more of a female problem. Women have to be pregnant and have the baby. So by extension, it's their issue with the getting pregnant. And that's totally not the case.

Anita Rao
So there are numerous causes for male infertility. We've heard Jared talking earlier about issues with sperm and sperm retrieval. Talk to me about an overview of some of the most common causes for men.

Dr. Paul Shin
The gamut of things that can cause male infertility is mind boggling. It can be something that you're born with. It can be something you've acquired. It can be from congenital childhood conditions. It can be from drug exposure and toxin exposures in the workplace, chemotherapy. There can be medical and genetic diagnoses. There can be surgical causes of male fertility. So, there's truly a wide range of different causes that — that you need to look at and examine. And — and you know, that's one of the things that I find really rewarding about it, but also really challenging is you have to go down a lot of these different rabbit holes to maybe figure out something that maybe even the patient didn't think was that important, but actually has a lot of significance. So causes are kind of all over the map.

Anita Rao
We've been hearing about sperm and the number of sperm and sperm count. And I'm curious about how important sperm count is in fertility and what lifestyle factors are important and relevant when thinking about sperm count.

Dr. Paul Shin
So your initial lens that you're looking at the analysis through is the notion of a couple conceiving naturally through intercourse. And so sperm count is super important because you need motile swimming sperm to get the job done. They've got this crazy American Ninja-style Warrior course to navigate and not all the sperm are going to make it through. So you need a decent number of runners to start the race to get them to the finish line. So sperm count in a way is very important. But there are other subtexts to that, things like motility and progression and how the sperm are shaped that also factor into not only natural pregnancy, but your other considerations for therapy moving forward, whether it's inseminations or even IVF.

Anita Rao
We heard from Jared earlier about the procedure microTESE, which is a retrieval of sperm from the testicle. Can you talk a bit about some other common treatments?

Dr. Paul Shin
I think one of the main things that oftentimes befuddles patients and even practitioners is that when you start to look on the internet at different resources to try to get information about male fertility, there's everything from what I would consider pretty reliable resources to every conceivable anecdote about how to get pregnant. One of the big factors that we always take into account is the biological clock or timing. One of the real difficult things about male fertility treatment is that when a guy makes sperm, the sperm that he might make on a given day — and it's an ongoing process — isn't going to be ready for ejaculation for two-and-a-half to three months down the line. And so between the timing of any intervention to make somebody's sperm count better to realizing that the impact of that intervention, it might be three to six months. And not everyone comes in on the female partner side with having six months to make a decision. So part of the workup for any guy that comes in with either a low sperm count or no sperm count is to take a look at blood hormone levels. Sometimes, hormone levels need to be supplemented.

Another very, very common cause of men coming in with compromised semen analyses are guys who take testosterone — either through legitimate prescriptions or sometimes kind of a little on the down-low from a buddy at the gym sort of thing. One of the main causes of compromised semen analysis in men is actually a very benign testicular condition called varicose veins or varicocele that many men are born with. It doesn't always impact fertility, but it is one of the major things that we consider when it comes to ways to correct sperm counts. And then ultimately, if it comes down to it, yeah — things like microdissection or sperm retrieval, to get sperm to use when eggs are ready.

Anita Rao
Trans and nonbinary folks are really underserved in — in medicine generally, but also in the fertility space. I would love to know some of the particular challenges that you've encountered with patients that you have seen who want to have conversations about fertility.

Dr. Paul Shin
One of the most difficult things to deal with when you have a transgender female come in, who wants to perhaps — get back to the point of being able to making some sperm is simply the time allotment that you need for this to happen. And so when we're consulting with patients who are transgender, it's almost easier to think of it in terms of how you would take care of a cancer patient, where it's much easier to get the sperm sample or semen at an earlier stage prior to hormone therapy. But that's not always feasible or realistic to do either. You know, everyone's situation at the time that they transition is different. So I'd say the biggest challenge that we face is that you're going to take someone who is taking estrogens — and sometimes for the longer term — and have to take them completely off of that. And then what happens is things go back to as they originally were. Testosterone levels go way back up. There are some very visible things that happen: hair growth, beard growth, things like that. And it's not as though it's a two week process to get sperm back, it can take upwards of say, three to six months or sometimes even a year. So it's dealing with the sort of fallout of having higher testosterone levels while you're waiting for the sperm to come back. And that is, I think, the biggest at least medical challenge that you face. The good news is that in most cases, these things are very doable if you wait it out long enough. And even in patients that have been on estrogens for a number of years, if you just give it enough time, you can see restoration of sperm in the ejaculate. And then you freeze it and save it and then they can go back on their estrogens.

Anita Rao
If you've been an Embodied listener for a while, you probably know that I have a soft spot for medical practitioners who really level with their patients. Not just about what's going on physically, but how it affects their emotional health and relationships as well. After this conversation, Dr. Paul Shin has been added to my very unofficial list of practitioners I'd see if I have the reason or opportunity. But he and other urologists are up against some big challenges when it comes to changing the public face of what infertility looks like. In Jared's opinion, if more Black men publicly share their infertility stories, more attention could be paid to their unique challenges. But he also acknowledges that the bigger shifts need to be structural ones in the medical system writ large.

Jared Wright
I think there needs to be more of a trust in the medical community — how we get there is a little bit above my paygrade. But both of my grandfathers were vets, and one of them in particular — he always went on about how he didn't trust doctors, how he didn't believe in them. And you know, when I'm 9, 10, 11, I'm just like, "Papa, why don't you believe in a doctor?" And then, you know, reading things that I read about the Tuskegee experiment and things of that nature, I realized that my grandfathers probably went through a whole lot of messed up stuff that I'll likely never know about. So, I think that there has to be some sort of trust there with medicine, because when I started Googling this issue, and this topic, out of the handful of studies that I saw — from what I remember — they were very inconclusive. And Black men and other people of color didn't make up a big portion of those studies. So, in order to get some more answers to help people going through this — of all colors and all races — I think the trust needs to be there, so more people come forward, so more research can be done.

Jon Summers
It was due to my cancer back in 2011 that we were thrust into this adventure. But fast forward, [I] meet Laura and she's asking about kids and whether I wanted them and — or no. And I just said I couldn't have them. And she just asked: Is that true? And it was quite funny, at that time — obviously I'd made this no kids [thing] my identity, and I just decided that I would — I would just take kids on and mentor them. But that question — being asked whether that was true — it actually sent me inwards. I went looking for answers. We actually did a fine needle aspiration. And at that time they found one immotile sperm. And that actually was enough for Laura and I to — basically jump in feet first. We have had success with our daughter. But it has had its challenges, I do have to say. I believe we've become stronger and I think you would get the same from Laura. We've created some strategies such as baby making meetups, where — these are the times that we would talk about infertility. Because Laura could talk about infertility all the time, and that would actually create a lot of stress in me, and angst.

Anita Rao
That was Jon Summers. He's a co-creator of the Infertility Man account on Instagram and YouTube. Whether or not a fertility treatment will succeed depends on factors that are highly specific to a couple of circumstances. So what happens when you don't get the outcome you'd hoped for, after a decade of trying?

James D’Souza
I do feel like I'm the only person who's talking about it. And it is a bit like I'm in the dark, walking around, trying to find someone else who's also dealing with similar things.

Anita Rao
That's James D'Souza. He's a teacher, blogger and podcaster based in the U.K. After years of experimenting with different infertility treatments and considering other options for building a family, he and his wife have decided not to have children.

James D’Souza
It is very much like grieving. It comes in waves. I'll be fine one day, and then I'll walk into school — I work as a teacher — and one of my colleagues will have a car parked and in the back will be a baby seat. My thoughts will spiral very naturally, and this happens a lot less than it used to. And we've learned to be very open about how we're feeling and whatever we're struggling with. And once we had that framework of thinking about making the choice not to have children as a process of grieving, it gave us a lot more freedom to be able to understand what we were dealing with.

Anita Rao
You joined some virtual peer support groups at various moments throughout the process and have sometimes felt not fully supported in those spaces, or mixed at times. I'd love to hear about that and what's missing for you in those virtual spaces.

James D’Souza
What's missing is some reality. Men are very driven to find solutions. Rather than look at: Well, what might actually happen? And one of the facts is IVF fails more times that it succeeds. So I think that acknowledging of reality is missing. And then the other thing I think is missing is being willing to just listen to a guy's experience and not do anything with it. Not make suggestions, not — whatever. Just, listen. And then related to that is this idea of: never give up. I really don't like that term. Keep going until it's no longer right for you, is I think much more empowering because it leaves — it leaves the couple who were thrown into that fertility journey a sense of agency about whether they continue or not. I feel like the female conversation about fertility and infertility is much more emotionally aware than the male conversation — although it is changing.

Anita Rao
We've heard throughout this conversation, links to — or I guess allusions to the links between the virility and masculinity and how much that assumption is part of what men who are experiencing male [infertility] go through. You too found yourself experiencing what you describe as a crisis of masculinity in this process. I'd love to hear a bit more about that and how you navigated that in the context of your relationship in particular.

James D’Souza
I think men who are dealing with fertility and infertility confront their masculinity in a way that no other man does. And I questioned myself: Am I a man if I can't have children? When I got that first call about the 0% normal forms in your semen analysis, I thought: It's all my fault. And for my wife's part, she was really supportive, very solution-oriented, very looking at "Well, what would we do next?" What I've learned to do is to go back to the facts. Okay, if it's 0% normal forms, what's the next thing I could do? What supplement could I take? So it's made us stronger as a couple. It brought us together to face the world in a way that I don't think anything else could.

Anita Rao
I know that there have been a lot of moments in this journey when you all thought about building a family in a different way, whether that's through adoption or thinking about surrogacy. Can you talk to me a bit about about your experience looking into those options and how you all made the decision that you did?

James D’Souza
So, whenever you're going on a fertility journey, people will say, "Oh, do IVF if you're finding it hard to have a child. Well, why don't you adopt?" They say, "Adoption, you can just adopt. It's really that simple." And adoption is a process, which is very challenging. And we met with social workers, we talked with social workers, we talked about the process that's involved. And the social workers are very honest, very real. And they say, "This is tough." And the reason we held off was partly cultural concerns.

My — our background is originally from Goa, in India. My parents came to the U.K. via East Africa. And I was born here and brought up Catholic, same as my wife. So we have this mishmash of cultural influences, it's really important for us. But a lot of the children who are up for adoption, they're not babies. Certainly in the U.K., in and around London, and most local authorities in the U.K. And there — there's a lot of different cultures there. So that was a big concern for us. But the real thing that confronted us was, if we chose to adopt, we will definitely be dealing with a child that has — would have a lot of different challenges, difficulties, trauma, all of that. Were we willing to take that on? And when we really looked and really thought about it, we weren't. And the financial aspect of it as well. So making that choice was very difficult. But ultimately, we think it was the right choice for where we are and what we saw our lives being about after deciding not to pursue fertility treatment or trying to have our own family.

Anita Rao
I mentioned that you also considered surrogacy, but it was right around that time that you were actually also diagnosed with testicular cancer. And I'm curious about how the experience of going through what you've gone through in your fertility journey shaped how you approached your cancer diagnosis.

James D’Souza
Yeah, you couldn't write this. We'd filled in the forms for the surrogacy charity. And then about two months later, I got diagnosed with testicular cancer. And then getting a cancer diagnosis and sharing with people that I have — I have been diagnosed with testicular cancer was easier than making the choice not to have children. And it was easier to get people's support for that than having fertility treatment. And I think it's because people kind of know how to react to a cancer diagnosis, but they don't really know how to react to couples dealing with a fertility journey, or couples who've tried to have children and are choosing not to have children.

Anita Rao
James has now been cancer-free for two years and has started his own small coaching business to support other men who are dealing with infertility and childlessness. Doing this line of work isn't always emotionally easy. But it's important to him to create space for a part of the fertility conversation that is even more marginalized: people who don't have what would be considered a success story.

James D’Souza
Nobody wants to hear from us. The media aren't interested, our stories aren't told. The idea of fertility treatment and a happy ending is all over the place. But my story tends to disappear and is a huge blind spot. And I think it speaks to the bigger conversation about what it means to be a man and masculinity — that is such a blind spot. And I look at the childless women space and there's a lot of engagement. There's a lot of talk and a lot of conversation about that. And I think with men it will catch up. But what I've become also very interested in is the wider conversation about masculinity and how do men in general deal with what it means to be a man. And I think the fertility angle is the thin end of a very big wedge. That's how I'm choosing to look at it.

Anita Rao
Embodied is a production of North Carolina Public Radio, WUNC, a listener-supported station. If you want to lend your support to this podcast, consider a contribution at wunc.org now. Incredible storytelling like you hear on Embodied is only possible because of listeners like you.

This episode was produced by Paige Perez and edited by Kaia Findlay. Amanda Magnus is our regular editor. Skylar Chadwick is our intern and Jenni Lawson is our sound engineer. Quilla wrote our theme music.

Thanks to everyone who contributed their stories to this episode.

And I want to share those updates from our guests I told y’all about earlier. Jared and his wife have had a couple of unsuccessful embryo transfers since we first aired this show. And they’re going to be going through a couple of more cycles this year.

We also heard from James, and here’s his direct quote. “[I’m] now four years cancer-free [and] I'm learning to skateboard. My point is - life goes on and it's what we make it.”

Thanks so much to Jared, James and to you for listening to Embodied. If you like this show ,please spread the word in your own networks. Word of mouth recommendations are the best way to support our podcast.

Until next time, I’m Anita Rao, taking on the taboo with you.

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