"You're still a totally valid person even though you can't do this one thing"

Men and infertility

Infertility can be uniquely difficult for men, but their struggles are largely overlooked. A new support group aims to change that.

For people who are facing infertility, every week is infertility awareness week. But for those people lucky enough not to be facing it, there is a special week set aside to contemplate its complexity and sorrow, and this is that week. 

Stories of infertility tend to focus on women. But for men, the sense of loss and powerlessness can be just as ferocious — men are just less likely to express it. Yesterday, I published an article in the Globe and Mail about a group of men who are trying to change that. Under the auspices of Fertility Matters Canada, they are launching two online support groups, so that men can talk through how infertility affects them.

Below, before the link to the Globe story, please find a slightly longer version of that story. The longer version includes comments by a man who did not want to be fully named (and so was edited out of the Globe story) but his contributions, in my opinion, were important ones, so I include them for you here.

Coming to grips

By the time Vince Londini had his semen tested, he and his wife, Lori, had already been trying for a baby for a couple of years. He offered to go for testing first because he knew it was easier in males. But he didn't expect the results he got: he had no sperm. 

"I never thought this would happen to me," he says. "I didn't have any idea how to process what it meant."

More than anything, he felt tremendous guilt. "We entered into this relationship under the promise that we were going to have kids," he says. "My inability to deliver on that promise felt like a really big burden." He told his wife that he'd understand if she wanted to leave him. "I felt like I owed her that out." She told him to shut up. 

Later, they learned she too had a fertility problem: blocked fallopian tubes. "It kind of felt like it levelled the playing field," Londini admits. "It felt like we were more in this together than we had been before." In the end, the couple decided to use donor sperm and IVF, and they now have three children, aged fourteen, twelve, and eight.

Londini, who runs a support group in London, Ontario, for people who have used or are considering using donor sperm, remembers the isolation of infertility. There weren't really any friends to talk to. "Guys have this very jocular, competitive interaction with their peers, so admitting that you can't do something like procreate is a sign of weakness." 

Tim Matson recalls a similar void. He and his wife, who had unexplained infertility, ended up enduring four years of treatment, including seven rounds of intrauterine insemination, in St. John's, Newfoundland, where they live, and then four IVF transfers, in North Carolina, close to where his family lives. (Newfoundland has no clinics that provide IVF.) The couple now have an 8-month-old son. 

He recalls finding infertility a difficult subject to broach. "It's not something you bring up over a game of pool," says Matson. When he needed time off to do IVF in the US, he told his school only that he had a "medical thing" to deal with. He didn't confide to a single fellow teacher. He didn't reveal anything to a close friend-group until the group pushed to know why he and his wife were away in North Carolina — and that wasn't until they were years into their struggle. "In retrospect, I feel foolish," he says. But he's still not sure what should have been said. 

He wishes he'd had someone to talk to about the specifics of the experience — someone who understood what it was like to have to schedule sexual encounters with your wife or watch as she injected herself time after time with fertility drugs. He wanted to be there to support her, but he needed support too: having a kid had been a lifelong dream for him, and he worried what would happen if he never became a dad. It felt like there was no one to talk to about any of this. 

Londini and Matson are two of about a half-dozen men who recently formed a volunteer committee through Fertility Matters Canada, an infertility support group, to set up more support networks geared specifically to men. They just launched both open and closed Facebook groups for men. They hope it will be a space where guys can give each other the heads up about what to expect during treatment, help interpret each other's test results and gripe among themselves without worrying about hurting their partners' feelings.

It's not only that there aren't many resources for men — there aren't — but many men are reticent to reach out for support, says Young Kim, a social worker who counsels infertility patients at the London Health Sciences Centre's fertility clinic. Even if they do eventually get individual counselling, he says, it's usually only after their female partner suggests it. 

The hesitation might be because so much of infertility treatment is performed on the body of the female and so men feel that they don't have the right to speak up, says Kim. But it might also have to do with feelings of guilt and shame. "I try to remind them it's a medical condition," he says, "that they never asked for this." 

Sometimes when men do reach out to friends, they reply in ways that hurt. Male friends in particular are apt to make sex jokes to try to lighten the mood. "Don't do that," says Londini. Others tell you to just relax. Don't do that either. "That is unanimously hated by anyone I know who's ever struggled," says Peter, who only wants to use his first name. 

"I had no sperm," says Peter. "No dead sperm. Not even germ cells to produce them. Total absence of anything for producing." The news crushed him. "My wife and I bawled our eyes out. I'd known my entire life I wanted kids."  

He and his wife ended up doing IVF and using donor sperm. "The second transfer is now 10 months and a few days old," he says. Looking back, he wishes he hadn't spent so much time worrying about being the biological father. He says it matters even less than he imagined it might. "All the time we spent chasing my genetics was time we could have spent playing with this baby."

When David Howe learned in 1992 that he had an extremely low sperm count and poor motility, he was in shock. He and his wife had a hard time discussing it. They considered sperm donation and adoption but didn't actively pursue either. "I was stuck, and she didn't know how to get me to move on," he says. "That's probably where a support group might have been helpful." The marriage ended two and half years after the diagnosis, and within a short time she'd remarried and had a child with her new husband. 

Howe never had kids. "I think I would have enjoyed being a dad," he says. "There was a low-key sadness to be involved with other people's children." His new partner didn't really want kids, so it wasn't an issue between them; he left Toronto to live with her in Munich. "It isn't the end of the world," he says, looking back.

Scott LeBoldus and his wife didn't end up having kids either, despite trying for six years. The BC couple had eight pregnancies and eight pregnancy losses. After the fourth miscarriage, he says, he didn't want to continue, but his wife, who had unexplained infertility, couldn't stop. "I couldn't deal with losses any more," he says. "I shut down emotionally." After they separated, LeBoldus went into therapy. "I wish I'd been forced into it at the beginning of the process," he says. "Nobody is taking care of your mental health."

"It's important for men to talk this out," says Londini. Maybe not all men are talkers, but they need to have a place where they can discuss their feelings and come to grips with infertility. He hopes the online forums will help.  

Londini was the first person Peter ever spoke to who actually "got it." Peter advises all men coping with infertility to find someone knowledgable to guide them. "Half an hour with someone who's been there is going to save you weeks of trying to mull things over," he says. "Everything you're going through and feeling is natural. You're not crazy. You're not stupid. And you're still a totally valid person even though you can't do this one thing."

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"Support groups help men deal with loneliness and stigma of infertility" 

22 Apr 2019, Globe and Mail

https://www.theglobeandmail.com/life/health-and-fitness/article-support-groups-help-men-deal-with-loneliness-and-stigma-of-infertility/

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Resources:

Fertility Matters Canada Men's Awareness (Facebook Page)

Fertility Matters Canada Men's Support (Facebook Group)

Men's Fertility Support (Facebook Group) UK-based global discussion board

Southwestern Ontario Donor Conception Support Network (Facebook Page) 

DI Dads (Facebook Group) one of the earliest discussion boards for men

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Email me at alison.motluk@gmail.com 

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