The Marginalization of an Infertile Man

When Marcus Williams was ready to face his infertility, he had a hard time finding any fertility doctors willing to face it with him.

Thanks to persistence and the wonders of modern science, my wife and I became first-time parents right around the age of 40. Our twin daughters will turn three soon, so our days are filled with the joys, sorrows, celebrations, frustrations, laughter, and occasional poopy handprints on the wall that go with the territory of being parents to toddlers. Before embarking on this roller coaster ride that most parents can relate to, we rode a less popular roller coaster that most parents avoid—infertility.  (The ride sucks—I don’t recommend it.)

My wife and I both had fertility issues to overcome, though we knew about mine for longer than we knew about hers. During our entire experience of dealing with these fertility issues, we handled it as an “us” thing, talking about it together, making decisions together, and processing everything about it together. It felt like the natural way to handle it. When it came to the fertility industry we dealt with, though—specialized doctors, clinics, literature, etc.—I often got the feeling that as a man, I was sort of an afterthought, like I could either provide the sperm or I couldn’t, and that was the extent of my role. “Fertility treatments” were all about getting women pregnant. Man optional.

My first experience of how unimportant male fertility seemed to be to the medical establishment was when I had my first semen analysis ordered, in my early 30s. The context was my first marriage, and after several months of failed attempts to conceive the old-fashioned way, I asked my general practitioner during a physical if he could refer me for testing. I thought maybe I’d get referred to a fertility clinic—I knew such things existed—or at least a urologist. Instead, he referred me to a local all-purpose lab that among other things, could do semen analysis.

I showed up expecting at least a private room and a skin mag to help things along. Instead, I was taken to a public restroom in the office building and instructed to produce my specimen sitting on the toilet, where the stall had a flimsy sliding lock, but the main door into the bathroom could not be secured. Ooooh, sexy! When I returned to the complain about the anti-erectional facility I had been directed to, they managed to find me some waiting lounge with a lock on the door where I did my business—with difficulty.

Whatever lab tech tested the sample called me by phone and said, “Sorry, uh…we didn’t find any sperm in your specimen.” Click.

No sperm was found in my specimen. (Fun Fact: that’s called “azoospermia”.) How did the sympathetic fertility doctor break the news? Oh, wait—I hadn’t been referred to a fertility clinic or even a urologist. How did my general practitioner deliver the news? He was done when he referred me to the lab, so I never heard from him. How did this life-changing, heartbreaking piece of news get handed to me? Whatever lab tech tested the sample called me by phone and said, “Sorry, uh…we didn’t find any sperm in your specimen.”  Click. No follow up, no more than token sympathy, no analysis of likely causes, and no discussion of possible treatments that may or may not be promising in a case like mine.

Around the time I found out I was infertile, it was becoming increasingly clear that my first marriage was failing. (Infertility wasn’t the reason it failed, but I can’t say the impact on our sex life helped any.) As a result, we stopped wanting to have kids together and I started to adapt to the possibility that I would never realize my dream of being a father. When I re-married, parenthood was back on the table, but to even start to decide whether it was possible or how much time, emotion, and money we were willing to invest in trying, I wanted to get that follow-up consultation that I never got the first time around. Specfically, I wanted a full work-up on my infertility and available options (or lack thereof) just so we could decide whether to even try. I needed a professional who would treat me as more than just another guy beating off into a cup.

The second time around, I was smarter. I called a fertility clinic, and described the kind of consultation I was seeking. It had been a few years since my first semen analysis, so they said a second one was necessary, and I would need a referral for that. To me, it felt like showing up to a gas station to fill up, and being told by an attendant that I needed to go somewhere that sold fuel. Wasn’t calling a fertility clinic already the right place to call to arrange whatever tests or consultations might be necessary for a patient with known fertility issues?

“Who do I need a referral from?” I asked. “Your doctor.” I had moved to a different state since the first time I got tested, so I went to my new general practitioner, who obligingly wrote out an order for another semen analysis for me to take to the clinic.

…a private room with a deadbolt on the door, a comfortable chair that reclined, several porn choices, and a “Lazy Susan of Dignity” in the wall to deliver the specimen cup at the end instead of having to walk with it and hand it to someone.

The clinic’s masturbation room (Fun Fact: I call these rooms “Spank Tanks”) was what I had imagined and hoped for the first time around: a private room with a deadbolt on the door, a comfortable chair that reclined, several porn choices, and a “Lazy Susan of Dignity” in the wall to deliver the specimen cup at the end instead of having to walk with it and hand it to someone. It still wasn’t what I would call sexy, but it was as dignified and comfortable as you can get for a room everyone knows you’re going into to masturbate.

I wasn’t really expecting the test result to be any different, but this time I felt like I’d gone to the appropriate specialists and my wife and I anxiously awaited the follow-up I’d missed out on the first time. After a week or two passed and I still hadn’t received a call, I called the clinic to inquire about the status of my test.

“Oh, we sent those results back to your doctor. Try him.”

I called my doctor, and he was as confused as us about why he’d gotten the results. He didn’t even know how to interpret the result, but he was happy to give me a copy. When I went to the office to get it, I interpreted it for him (since I’d seen a very similar one once before), and indicated which line meant that I still had zero sperm.

I had no idea at that point how to get a fertility doctor to give me the time of day. The first time around, I just didn’t know any better, but the second time I made it as obvious as I knew how that what I wanted was a full consultation about my fertility, and all I ended up with was another unelaborated test result from a general practitioner, with a little more luxury added to the masturbation part. (Fun Fact: Trying to ejaculate into a shallow plastic cup while people wait for it takes most of the fun out of masturbation.)

By this time, my wife and I were creeping into our mid-late 30’s, so time was working against us. However, we had decided to move to another state, so we again postponed any further consultations. When the dust from the move had settled, we decided to try again to get a thorough consultation about my infertility, and this time my wife got involved. She looked up fertility clinics in the area and after picking one together, we scheduled our first consult as a couple, instead of me approaching alone to ask for a consultation about my azoospermia.

…the doctor, from the moment we entered the room, talked as though the decision to try to get pregnant was already made (why else would a couple be there?), and started explaining all the different ways we might try to get my wife pregnant.

This time, with no new test ordered for me, we were given an appointment with an actual bona fide fertility doctor. (Fun Fact: Fertility doctors are called “reproductive endocrinologists”, RE for short.) All three of us were in the room for the consult, but somehow it felt like I was in one of those little kid chairs at a small table off to the side. My wife did not make me feel this way, but the doctor, from the moment we entered the room, talked as though the decision to try to get pregnant was already made (why else would a couple be there?), and started explaining all the different ways we might try to get my wife pregnant.

He didn’t ignore my azoospermia altogether, but other than offering to refer me to a urologist if I wanted (they must tell RE’s that male infertility isn’t their problem) he didn’t have much to say about it. He had lots to say about in vitro fertilization (IVF) and intra-uterine insemination (IUI), either of which were possibilities if we used donor sperm.  His counsel regarding donor sperm was to “Talk to each other, your therapists, your spiritual counselor, or whoever,” but all he seemed to care about was that sperm was a necessary ingredient to the fertility treatments that could get my wife pregnant. My fertility wasn’t his business. Or if it was, he sure didn’t get that point across.

I accepted the RE’s offer of a referral to a urologist. The urologist was great, and the first doctor I’d seen (in four attempts) who actually seem focused on me and my infertility. He was the first to use the phrase “testicular failure”, which sort of blew my mind and made it hard to hear anything that came after that phrase, but he had good bedside manner, and at least described what options there were in a case like mine. (Fun Fact: If your testicles don’t produce sperm, testosterone, or both, you have “testicular failure”.)

The presumed cause of my azoospermia was being born with undescended testicles that should have been corrected surgically sooner than they were. I had them surgically lowered around age 6; best chances at remaining fertile are given when done much sooner, like in the first year. There’s a procedure for azoospermic men called “testicular sperm extraction” (TESE) where they take some testicular tissue out and try to find some sperm in it under a microscope, because a procedure called “intracytoplasmic sperm injection” (ICSI) lets a single sperm be injected into an egg, so the usual hundreds of millions of also-swam sperm aren’t necessary. (Fun Fact: The testicular tissue they take out does not get put back.)

In the urologist’s opinion, he estimated the odds to be 5% or less of finding sperm through TESE, and that was just finding any. After finding, there would have to be successful fertilization (which depended on both healthy enough sperm and good eggs from an IVF cycle), successful transfer, and a viable pregnancy, with the odds getting worse at each step. Though I didn’t want to leave any stone unturned (grape unsqueezed?), those odds fell short of convincing me to slice out a piece of my testicle.

It was the first time I felt visible in an infertility process that began with my own infertility!

It wasn’t great news, but it took roughly eight years and four doctors to finally hear it from someone who sounded like he knew what he was talking about, and was talking to me. It was the first time I felt visible in an infertility process that began with my own infertility! Here’s the thing: this urologist, though I have nothing but good things to say about him, was still not a specialist in male fertility. It’s a sub-specialty of urology, so it’s not like he never dealt with it, but it wasn’t his bread and butter like fertility is to a reproductive endocrinologist.

Skipping over a bunch of details (which I won’t skip over in the book I’m writing about all this), several months later found my wife and I gearing up for another cycle of fertility treatments after our first one—using donor sperm—had failed. I decided to look one more time for a specialist in male infertility, and since I live in the greater Los Angeles area, was able to find one, Dr. Philip Werthman. Technically, his main specialty is vasectomy reversal, but this was as close to an RE for men that I could find. I scheduled a consultation.

Though his spank tank could have been better, Dr. Werthman was the best I’d seen at making me feel like he was not only a male fertility specialist, but sympathetic to what his patients are going through if he’s their doctor of choice. He wasn’t sentimental about it, but even the decor was designed to release some of the tension. It’s funny, I can’t remember any of the specific items anymore that had that effect, but I remember that there were things that made me chuckle, and that relieved some of the anxiety. I do specifically remember one “prop” he had that wasn’t funny, but it helped make me feel like a man with testicles instead of a man with two numbers bouncing around his scrotum.

Among the various awkward aspects of having your junk examined is having your testicles felt for size. When the Dr. Z (the urologist) had done this, he checked one and then the other and said something like, “I’d say about a 6 and 7.”  Ever the optimist, I responded, “Is that on a scale of 1-8, I hope?”  “No, it goes to 20.”  This was probably my second least favorite thing I heard that day, after “testicular failure”. When Dr. Werthman examined me, he kept the numbers to himself at the time, and when it was time to share his observations in his office afterwards, he pulled out a loop with several wooden beads of different sizes on it. (Fun Fact: I call it the “testicular rosary”, but I don’t know if anyone else does.) He separated some and said, “Here’s the normal range, and here’s bigger and smaller than normal. Here’s what yours were.”  With that, he indicated the biggest of the “smaller than normal”, and the smallest of the normal range. It’s not the sort of thing you brag about in a letter to Penthouse, but it felt less emasculating than “6 & 7 out of 20”.

…he pulled out a loop with several wooden beads of different sizes on it…I call it the “testicular rosary”…

At this appointment, I did my third (and last) semen analysis. He asked if my specimen had ever been centrifuged and I didn’t know. Maybe it had, but it’s not like anyone ever gave me details about exactly how they did it. (Bastards.) It seemed like if there was any chance the previous methods had missed any sperm hiding in the vast torrents of semen I produced, Dr. Werthman was just the guy to herd them into a tiny droplet where a microscope could find them. He did not have the luxury spank tank like the clinic I went to for my second test, but it was at least a private bathroom with a lock on the door and a few skin mags. There was no chair, but the toilet at least had a full lid and not just an open seat to sit on. (Fun Fact: Test #3 was especially tight for space because my wife was in there with me putting on a show to expedite specimen production.)

Alas, my specimen still had no sperm, but it wasn’t a surprise. We were surprised, however, when he described “micro testicular sperm extraction” (mTESE), his experience with it, and put the odds of finding sperm in a case like mine around 25-30%. These were not great odds, but whereas less than 5% was not promising enough to go through the discomfort and expense just for the peace of mind of having exhausted all possibilities, 25-30% was just high enough to feel worth it. I did not honestly expect him to find any sperm, but one of the hardest things to come to terms with about donor sperm was uncertainty about whether it truly was our last resort, so this would give me (and my wife) peace of mind about that.

He found sperm. Not just one, either. He found 23. (Fun Fact: In a fertile male, a typical ejaculate contains hundreds of millions of sperm. Less than 40 million is considered sub-fertile.) Thanks to ICSI, every one of those 23 found its way into an egg. Bow chicka wah waaaah. Three of those embryos were judged viable enough (just barely) on transfer day to get transferred. Two more would surprise us by developing enough by the next day to be good enough to cryo-freeze for future cycles, if needed. Two of the three that got transferred stuck, and 31 weeks and 4 days later (full term is 40 weeks), my wife and I became parents to twin daughters.

…when it comes to the fertility industry, I felt very marginalized as a man…

Becoming a father is the most important part of this story to me, and there’s a lot more to our fertility journey than I can squeeze into one article, but my point here was that when it comes to the fertility industry, I felt very marginalized as a man, because it seems to be 95% about getting the woman pregnant. (Fun Fact: 98.3% of all statistics cited online are invented on the spot.) Some lip service is paid to the men, but whether the person with fertility problems is the man, woman, or both, it seems like men are relegated to cheerleader status or “support crew”.  The available literature on infertility, whether clinical in tone or “It Happened To Me” books and articles, are predominantly by and for women. This is why I’m writing my own book, “My Broken Balls”. (If you’re an agent or publisher, feel free to contact me. Seriously.)

Infertility is not easy on anyone, so I’m not trying to make it out like men have it harder. When it comes to the physical sacrifices and discomfort of fertility treatments and procedures, it’s not even close. I was laid up for a couple days with ice shoved down a jock and tender for a few weeks after when I had my mTESE, which sounds like a great reason for a pity party until I look at my needle-phobic wife who endured multiple shots per day on more than one cycle, had a twin pregnancy complicated by severe gall stones, and surgery to remove her gall bladder a few weeks after an emergency c-section to deliver our preemie daughters. Iced balls for a few days sounds like a day at the spa compared to that.

However, there’s more to the whole thing than the physical discomforts—a lot more—and women aren’t the only ones who suffer and struggle with infertility. I can’t cite peer-reviewed research to demonstrate how common my kind of experience was, but judging from the abundant stories I’ve seen shared in online support groups, I wasn’t the only man feeling marginalized. It’s worth noting that the vast majority of infertility stories I’ve heard, even the ones about men, were being shared by women. It seems that it’s not just fertility doctors making men feel like they don’t belong in the room, but men themselves who often choose to either clam up about it, or make it all about their wives.

I don’t have any solutions for men getting short shrift when it comes to infertility, but for starters, if there are any RE’s or urologists out there reading this: Please pay some attention to the men, too, and don’t make “actively trying to conceive” a prerequisite for being thorough with your analysis or presenting options, since both are relevant to making that decision. Also, have better spank tanks. Your spank tanks mostly suck, and not in the good way.

(Fun Fact: Most of the fun facts in this article weren’t fun, but it’s infertility—you gotta lighten it up somehow.)

—Photo andrewrennie/Flickr

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About Marcus Williams

Marcus Williams writes what he knows, which is a lot about a little and not much about everything else.

Comments

  1. Congratulations on becoming a father. Your perseverance is admirable!

    When men like the author struggle to get respect from medical professionals but there are sperm banks and fertility clinics across the country and abroad that are lining up to help women, what does it say about how society values men and fatherhood? It seems like it just reinforces the idea that men are disposable and fathers interchangeable figures.

  2. Celeste says:

    I went through infertility as well, and you are so right, it’s not pleasant. I would agree with you that in real life, there is not much attention paid to the man in the couple during anything reproductive. The division of reproductive labor just isn’t in a man’s favor, I suppose…which is pretty far from treating men like partners. I read exactly one book during that time which dealt with the male aspect, which was, “Not Yet Pregnant: Infertility in America”. It was done by somebody who surveyed people who went to RESOLVE support group meetings, so it had a lot of statistical breakdowns, mixed with some interviews. I sometimes wonder if the fact of male infertility being a urological subspecialty is because there are fewer ways to address male infertility. I do think it’s good to talk about this.

  3. I think the marginalization of men when it comes to infertility (and the seeming overwhelming focus on “getting her pregnant”) may point to the idea that as long he can ejaculate a man doesn’t really matter than much when it comes to parenting (until the baby is born and its time to pay the bills).

    It’s worth noting that the vast majority of infertility stories I’ve heard, even the ones about men, were being shared by women. It seems that it’s not just fertility doctors making men feel like they don’t belong in the room, but men themselves who often choose to either clam up about it, or make it all about their wives.
    We are told that as men our virility is a big (if not defining) part of being a man and when we don’t come through on this requirement we’re broken, and from what I’ve seen women get the same treatment when it comes to the ability to bear a child. But (for the most part) unlike women men also have the nice little “bonus” of being told to keep it all in and never talk about it. Stoic and all that.

    When told that your ability to get a woman pregnant is a vital part of your gender/sexual identity but come up short on that requirement and have been raised to believe that you are not allowed to talk about your problems (and bear in mind this problem comes on two fronts, medical and emotional, the two place men are raised to clam up on at all costs) is it any wonder that not many men speak up on this?

    Thanks for speaking up.

  4. Copyleft says:

    I’m encountering a truly alien perspective in reading this article. I have no idea why inferility would be traumatic or problematic, much less “heartbreaking,” but I guess it’s important to some people.

    Me, I don’t see infertility as a problem. It doesn’t endanger your health, it doesn’t indicate any related genuine medical problems… and as long as even one orphanage is operating, it’s not a societal crisis. Maybe having a kid built out of your own DNA, rather than someone else’s, is important to some people–but I can’t see why.

    • Does this mean you won’t be buying my book?

      • That was the best reply ever, Marcus. (Yours, that is).

        Also, thank you for opening yourself up and sharing your story. I will be completely honest and say that this is something I haven’t even thought about until now. Hopefully more people will be made aware of how one-sided the treatment of infertility is in our society and it can change.

  5. I guess I was lucky that our fertiliy clinic made sure every stone was turned to find out why my wife and I weren’t conceiving. They quickly sent me for semen analysis, and ultrasounds etc etc. Before finding out it was more of an issue with my wife, and god bless her for enduring months and months of needles ( fun fact – all administered by me). The result is the amazing four-year-old who stays up too late and doesn’t want to wake up on time.

    • Congrats! I’m glad it worked out for you and your wife. Like you, I was the shot giver (and shot preparer) because my wife couldn’t even look at the needles, much less giver herself a shot. We had a whole routine where she’d lie down and get relaxed while I prepped the dose, and then after every shot she rewarded herself with a chocolate. The needles were no small obstacle to overcome with her, so I was then and still remain impressed with her ability to submit to all those shots. I don’t even have that phobia, but it would still suck to get that many shots.

      In my case, the source of my infertility was never really a mystery, at least as far as knowing I was azoospermic even before deciding whether to try fertility treatments, but as I described, it was no easy task getting a doctor to give me a full consultation and range of options, in contrast to what happens when a woman shows up at a fertility clinic and gets the full work-up and presentation of options, regardless of the nature of the infertility. My stones were more ignored than unturned, with donor sperm being pretty much the first and only option our RE wanted to talk about upon hearing that I was azoospermic. My wife turned out to have issues, too (age-related), but it didn’t take going to four doctors to find one inclined to discuss the diagnosis and options in depth.

  6. Well said Marcus…more men need to talk about this to normalize it…and to be reminded that there are two people in this process. My wife and I started a couples support group through Resolve to fill that void, and it was amazing just how marginalized guys felt at first–but how they found their voice in the process as they talked out loud about it more often…the old strength in numbers thing maybe? To Niel@GMI–you hit on an important point–you need to know the success rates of the clinic you are going to. The SART report..(sart.org) has success rates for clinics all over the country–and I can assure you not all REs/Infertility doctors are the same. Many OBgyns are dabbling in infertility under the supervision of an RE (our first 2 years of treatment were under the supervision of a guy with “license egg hunter” pin, but no actual Reproductive Endocrinologist training/degree). By RE #3, we finally read the SART report (also after IVF #3 failed) and picked one of the top 5 clinics in the country that did EVERY test on both of our biology from day one. We threw a hail mary pass when we picked the #2 clinic in the country (53% success rate for our age/fertility problems compared with 23% at the best clinic we had gone to in our home state) but made the catch in the fertility end zone–when our last 2 frozen embryos scored us our now 9.5 year old daughter.

    • Thank you, Denny. (And thanks for your article, too!)

      Success rates can be a useful guide for sure, but they don’t tell the whole story. I wholeheartedly agree with going to a bona fide specialist, not just a dabbler in fertility, when you know that’s what you’ll need. Among those specialists and clinics, though, it’s possible for some to keep their success rates higher by turning away more difficult cases, while those who take the harder cases may be the best for *those cases*, but their overall success rates will suffer. These aren’t really things you can pick up on just by looking at numbers in SART, which is one reason support groups like yours – or online – can be a tremendous resource in choosing the best match for your needs. Infertility comes in many types and degrees, so while the place with the best stats are always attractive, sometimes a couple might be better off going to a place that specializes more in difficult cases, even if that makes their stats less encouraging.

      RE #1 for us had decent success numbers, but terrible bedside manner. Every time we saw him, he would mention my wife’s age about five times. The very first time, it’s relevant and fine to explain why. Every time after that just felt to her like rubbing it in or implying that we hadn’t understood why age was a factor. When the first cycle failed, we didn’t hesitate to switch. RE #2’s practice was still so new she didn’t even have published SART numbers yet, but we had confidence in her previous experience at a reputable fertility clinic with good numbers, and she had great bedside manner. She was able to add us to her “success” column on our first cycle with her, but we wouldn’t have considered her if basing the decision on SART reports alone.

  7. Jameseq says:

    It wasn’t great news, but it took roughly eight years and four doctors to finally hear it from someone who sounded like he knew what he was talking about, and was talking to me. It was the first time I felt visible in an infertility process that began with my own infertility!
    [snip]
    He found sperm. Not just one, either. He found 23. (Fun Fact: In a fertile male, a typical ejaculate contains hundreds of millions of sperm. Less than 40 million is considered sub-fertile.) Thanks to ICSI, every one of those 23 found its way into an egg.

    23, wow that the doc was able to find 23 healthy sperm is a testament to his skill and expertise


    Infertility is not easy on anyone, so I’m not trying to make it out like men have it harder.

    if yours and emilia’s http://goodmenproject.com/health/the-missing-voices-of-men/ articles
    are indicative of the general level of clinical knowledge and practice regarding male infertility – then lets not pull our punches.
    one would think it is standard practice to investigate WHY a man is infertile, that it isnt – is truly astonishing.
    the convention seems to be a just a shrug of shoulders.
    astonishing

    • Thank you for your comments. My beef is more with the clinical practice than the clinical knowledge . That is, male infertility seems to be pretty well understood, but there don’t seem to be near as many practitioners specializing in it as there are the female types of infertility. I think there are some valid medical and business reasons why that’s so (fewer treatments are possible for men, and women drive the market), *but* that doesn’t excuse terrible bedside manner, or a tendency to deflect and minimize men instead of referring them to one of those specialists out there that could help them.

  8. I wonder if doctors in fertility clinics just assume that the male part of the equation doesn’t matter much because donor sperm is so easily available, so there’s no point investigating the cause of male infertility or trying to fix it? If so, that’s really unfortunate. More men like you need to speak up about their experience.

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