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    Where is the Infertility Fraternity?

    Dawn Davenport

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    Men often don't have support to help them cope with infertility

    Where is the infertility fraternity?

    After my blog on Tuesday singing the praises of the Infertility Sorority, a couple of people commented lamenting the lack of an infertility fraternity. It’s true that there are few places for the guys to get support leaving many men with the feeling that they alone are suffering from the disease of male infertility. They alone can’t give their wife the baby they both crave.

    One man posted:

    There is definitely a sorority for woman when it comes to IF on the web. I am glad because I can only imagine what it was like for woman before the internet and having even fewer places to turn to.

    However, what is lacking is a fraternity for men going through IF. I know part of it is due to the nature of men and their inability to open up about it. The idea that opening up somehow makes them weaker is a myth that men have. As a male going through IF (azoospermia) I have been able to find very few resources for men. Even resolve’s awareness week last week had next to nothing on the male perspective. At times I feel a bit awkward posting on sites that are female dominated but it seems to be the majority of forums out there. I also understand that I am unusual (in more ways than one) in that I have been more open about my IF. But it still would be nice to have that fraternity.

    On yesterday’s Creating a Family Show on Getting Pregnant with Male Infertility, Dr. Mann said that anywhere from 30-40% of infertile couples suffer from male factor fertility issues. That’s a whole lot of potential recruits for this fraternity, but I have a strong sense that any infertility fraternity would be doomed to fail.

    Why It’s Hard for the Infertile Guys

    I think the commenter is right that many men have a problem opening up about infertility. Our society tends to equate masculinity with virility, which makes it particularly difficult for infertile men. We also tend to discount the desire many men feel to be a dad. There is precious little societal sympathy for infertility in general, but what exists tends to flow to the women.

    But even if we could rectify the lack of understanding for male infertility, I still don’t think we’d have many pledges for our infertility fraternity because men don’t go online for support in general. Heck, for that matter, they don’t go all that often to in person support groups either, unless court or wife mandated.

    Why It’s Hard for the Infertile Women

    Maybe I’m being sexist, but it seems that most men I know get their infertility education and support from their wives.  Being supportive of each other draws many couples together, but it can place a huge burden on women to have to carry the emotional load for the couple.

    One woman emailed:

    Dawn, I could not have remained sane without my “infertility sorority” friends. They’ve saved my life and made this awful experience a little less painful. I wish my husband could find similar support. He needs it so bad, but I need for him to have it too. I’m the only one he talks with. He hasn’t even told his family about his/our infertility. I have to hold all of our worry and pain as a couple and all the responsibility of deciding what to do. Infertile men need outside support too.

    What’s been your experience?  Would your guy join any infertility fraternity? Do you (or did you) carry the infertility emotional weight in your family? Did it feel like a burden or a welcomed load?

    I hope the guy who left me that comment takes me up on my encouragement to join the Creating a Family Facebook Support Group. I can’t promise a lot of men, although there are some, but I can promise a lot of really supportive women.

    The Creating a Family show on Getting Pregnant with Male Infertility was really interesting, and one of our guests is the current President of the Society for Male Reproduction and Urology. The two doctors debunked a lot of myths. It’s an hour well spent, so listen right here or download it to your phone and listen while you drive, run, or cook.

    Download

    Download  RSS Feed  Itunes
    What We Talked About On the Male Infertility Show:

    • How common is infertility in men?
    • The first step in diagnosing male infertility is a standard semen analysis. Is it important that this first test be done by a specialized doctor or can you use your internist or RE or family doctor to preform this test.
    • Should you ask for anything specific or special to be done with the first test?
    • How long should the man have gone without sex to get the best representative sample?
    • A semen analysis tests for volume, count, motility and morphology. Which one is more likely to be the problem. Which is the most common?
    • For couples who want to try everything they can to up their odds before they go through fertility treatment, should they try the menstrual cups —Diva or Instead are two brands–after intercourse?
    • What is the optimal frequency of intercourse to increase the odds of a natural conception when trying to get pregnant?
    • Has research shown that a specific diet or foods will positively or negatively affect male fertility?
    • Do soy products negatively affect a man’s fertility or sperm count?
    • How is male infertility treated? What is the best male infertility treatment? How to get pregnant if your husband is infertile?
    • How do you know if you should try IUI first or go directly to IVF if your spouse has male factor infertility?
    • Is ICSI routine now with IVF if any male infertility is involved? Should it be?
    • We mentioned the recent research on the safety of IVF and IVF/ICSI on the children conceived. We talked about this research in detail on a recent Creating a Family show–How Does Fertility Treatment Affect the Babies.
    • How are the sperm to be used for ICSI chosen?
    • How does a man’s weight affect his fertility or sperm count?
    • Why does obesity cause infertility?
    • How to choose sperm from a sperm bank?
    • Is sperm from a sperm bank safe?
    • Do cell phones cause or contribute to male infertility or a lower sperm count?

     

    Image credit: SirAdderley (great photo)

    02/05/2013 | by Dawn Davenport | Categories: Blog, Infertility, Infertility Blog | 27 Comments


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    27 Responses to Where is the Infertility Fraternity?

    1. Kelley says:

      When my husband and I started this process, it was always and “if” and not a “when” we would ever have kids. Consequently, when the call came for an emergency foster care placement, DH was caught a little by surprise. You go through the classes, yes, but it really does take a bit for reality to sink in & we were warned we were in for a long wait. Instant fatherhood took awhile to adjust to. The man I call my “eternal optimist” actually went through a mini-depression. He said that most men have 9 months to prepare after they find out they’re about to be fathers. He had an hour run to Walmart for supplies. There was no one he could talk with about these feelings besides me. Our local foster care support group is extremely small & we were new to it anyway & all our friends with kids had them the old fashioned way, so they just didn’t get it. I wish there had been somewhere I could have directed him to. I can be a good listener, but I can’t mentor him in fatherhood through foster care.

    2. Kelley, some counties have parental support groups, but it sounds like your county is not one of them. Yeah, instant parenthood can be hard for anyone–male or female.

    3. Lisa, I think you’re right that guys are less likely to express their grief due to the way we raise our boys, but I also think that for the same reasons, society doesn’t accept well the brave guy who does step up and say “I’m hurting.” It takes a remarkable man to speak that truth. I guess the best we can do is encourage the ones we meet and hold dear and support our own.

    4. Jessica says:

      There was a blog post that I saw the other day about the ten words that describe infertility. It really hit the mark and I even showed it to my brother who has had some difficulty in understanding what is happening to us. I showed it to my husband, and he said that the (male) author got it exactly right, but when I asked him if it were just me or if he felt like that as well, he didn’t really respond. He hit me last night with the “God’s will” argument. That didn’t go over too well.

    5. Greg says:

      Justin,

      If counseling has taught me anything it’s that anger and rage are the cause of an underlying feeling or feelings, feeling alone along with frustration and anxiety are the causes for my anger. Chances are there is some type of underlying feeling(s) causing your intense rage. Best of luck to you.

      Dawn,

      I completely agree. No matter what method we pursue both of us will have to be 100% committed to it. I say adoption is an option provided that both of us are committed. Right now we are not there yet. I’m committed to investigating adoption but not at the point where I know it’s what I want to do. It’s a process. The first thing we need to do is get through the stress of our situation.

      Both my wife and I have been through the IF diagnosis process. She has seen two RE’s that have diagnosed her situation and I have seen a urologist. Her second RE is a doctor that you had on your show recently (Dr. Molinaro from RMA of NJ). Unfortunately on my end my azoospermia is caused by a Y Chromosome micro deletion of the AZFb and AZFc. My Urologist told me that although a biopsy is an option there has never been a reported case of finding anything with those micro deletions. He is willing to do a biopsy but I have decided to not pursue the biopsy as I don’t want another false sense of hope. Plus I would not want to pass that along to any male off spring. On my wife’s end she has issues that would most likely lead to IVF with DI along with fertility injectible drugs being the only possible way for conception. Before we saw our first RE she had made it clear she was not comfortable going through IVF or doing fertility injectible drugs. Although she did say she would be more comfortable if it was my sperm.

      • Dawn Dawn says:

        Greg, boy, you are really in a tough position. I’m glad you’re getting the support of a counselor, and I wish you tons of luck on the next steps, whatever they may be. I respect that you are not wanting to move quickly in any direction right now and want to take some time to process, grieve, and heal. Good for you.

    6. MJ says:

      Hi, Dawn-thanks for this article. Like Greg, I am amazed how one little comment can lead to a whole article. This article rang so true for me-my husband and I suffer from male factor infertility (recently diagnosed as sertoli only syndrome-and therefore incurable, even with ART:() Funnily enough, this latest diagnosis came the same day as your article on the IF sorority-amazing how things work. This article sounds so familiar to me it is scary, except that I cannot even serve as a clearing house for the important information that I receive through reading books and online blogs such as this-because my husband is reluctant to read any of the things that I find helpful on this issue. I read the articles and books and wish with all of my heart that he would read them too, because I feel that they could be helpful, but he is resistant. It as if he had a cold and instead of taking the cold meds himself, he gives them to me to take in the hopes that his condition would be cured, without him ever having to take the medicine that is meant to help him. In this case I have the cold too (I am struggling with IF as well) but if I take the medication (read the article and get information/comfort from it) only my symptoms will be relieved, not his. I know that this may just be his way of dealing with the issue, but it breaks my heart to see him suffering so much with this, knowing that some relief could come from him reading some of this information (even from gaining the sense that he/we are not alone in this), and knowing that he is not ready or willing yet to take in these resources. Do you have any advice of how to deal with this aspect of the struggle? I will continue to be patient with my husband and offer what support I can second hand, but I am still feeling a bit helpless with this aspect of the issue. I think I know where he is coming from, but I still hate to see him suffer so much….

      • MJ, what a great analogy of asking someone else to take the cold medicine for your cold. {sigh} What a lousy place to be for both of you. I would suggest asking him to come to counseling with you because you need it. Asking him to do it for you may make it more likely that he’ll go. You are both hurting and both need the help both individually and as a couple. Explaining it to him that way, may make it easier for him to accept the help. Make sure to find a therapist that has a clue about infertility loss. Creating a Family gives some suggestions on how to find such a therapist at http://www.creatingafamily.org/infertility/resources/finding-an-infertility-therapist.html. I am so sorry you are both having to go through this!

        You still have the option of being parents through donor sperm (depending on your diagnosis), donor embryo, or adoption, but first you guys need to take the time to feel and grieve the loss of having children that share your combined genes. There are some good books on male infertility written by guys, but your husband is not likely to read them.

    7. Greg says:

      Great piece Dawn. Never did I think that my comments the other day would become a part of a piece. I did take your suggestion and joined your Facebook group. Thank you.

      The emotional pain that my azoospermia has had on my life is like nothing I’ve experienced. It has sucked the joy out of my life and put a major strain on my marriage. The idea of not being able to have a biological connection with a child is something I never imagined would be the case. It took me sometime to accept that but now with the possibility that I may not ever parent is very hard to accept. My situation is a unusual in that my desire to become a parent is greater than my wife’s, She would be fine if it was just the two of us forever. While I would rather be with my wife (who I adore) than alone it doesn’t make it an easier. Also, I am comfortable with using a sperm donor but my wife isn’t. I am unsure about pursuing adoption because of the emotional aspects of involved with the process as well as raising the child and balancing a relationship with birth/first parents. Plus right now I am not convinced my wife has much of an interest in it. Only time will tell if that changes.

      While I have not been been able to find a male support group, I have had other support. I have been in individual counseling which I would not have made it through these last few months w/out. After I went to my first session I finally felt that what I was going through emotionally was normal. Other support I’ve received has been from my wife and parents. Still it would be nice to have a male group where I could hear some of the things they are going through. The resources I frequent are female dominated. While there is nothing wrong with that sometimes I feel like that weird creepy guy.

      I do agree with what Sara V was alluding to, I don’t think guys want to talk about it or at least openly that is.

    8. Lisa N. says:

      I remember how concerned our friends and family were for *me* through the fertility treatments. I was always taken aback by this, because though I was the one who technically had to see the doc, take the meds, go through the procedures (mostly, anyway), my husband was going through it as well. All of it. He yearned for children, too; he, too, was disappointed every month when we found out, yet again, that we weren’t pregnant. He came with me to appointments, was there when I woke up from the surgeries. He wore my wedding rings when I went under anesthesia. It was he who held me when I wept, listened when I raged, encouraged me when I wanted to give up, and loved me when I hated myself. Not only did he have to live with me and watch my turmoil (exacerbated by the massive doses of hormones), he had to be the one to cause me pain–it takes some serious fortitude to jam a three-inch long needle into the person you love day after day. Yet, no one ever asked him how *he* was doing. Except for me, it didn’t occur to a single other person to ask. Why on earth was this? I told him I thought it was incredibly unfair, and was so concerned that, because my sadness, anger and desperation were so great, he wouldn’t feel he had room to feel those things, too. Something about the way we view the process crowds men out. Maybe it’s just a reflection of the greater culture, in which men learn from an early age to suck it up, put on a brave face, and move forward. There is some merit in that, but it also means that we don’t allow men to feel how they actually feel.

    9. Lisa says:

      Replying to Justin. I saw Dawn post about this topic on the creating a family FB group. I’m from the AP side of the group but we share so much in common I feel an AP’s view can weigh in here. “Do you feel men like me as intruders upon your sisterhood? As welcome members? As both?” I feel you are welcome. I would like to see more men. At times sororities with no male input give the illusion that men don’t care, feel, think about such things. There are both female and male “lurkers” who may be busy or not watching or just uncomfortable to weigh in. So if you didn’t speak up you wouldn’t be alone. We have a few vocal males of which I feel are some of our most valuable contributors. There are times our groups can become a “between us girls” thing. I agree society teaches our boys and men to be strong where they feel they cannot speak. One of the biggest life changing events for me outside was having a son. I would like to know that when my son grows up he will have access to the same support my daughter would receive. That he will be viewed as another human being who has thoughts and feelings and it does not diminish him or make him a weaker member of society in any way. On the contrary, by opening up it would show his strength.

    10. Lisa says:

      I would like to see participation from both genders in family topics. If there are females that feel otherwise my only reply would be think about your husband, son, nephew, or your neighbors husband, son, nephew and the impact it would have on them, their families, and communities if they are denied basic support that is available to others. It would be a service to any females thinking along the lines of female only to see male participation. I thank Justin and Greg for speaking up here. Please know there are men directly in the groups along with the men who participate vicariously through their wives. I have seen comments of “my husband and I were discussing this thread” many times.

    11. Lisa, that was so beautifully said, it gave me goose bumps. Thank you for saying it so eloquently.

    12. Lisa D. says:

      May the few light the candle for others to know it is ok, it is acceptable, they are not alone, and they are supported.

    13. Lisa D. says:

      I’m from the AP side of your house. I believe society shapes our boys and men where they feel they cannot express themselves. I think its better today than in the past but needs to get better. As a group they are known under reporters as victims of rape. That right there should scream that we have an entire group of people who are not allowed to express themselves, have feelings, show “weakness” where they might need support, etc. They are under represented in adoption, infertility, family world. So we have all these major life impacting events and men feeling uncomfortable or questioning acceptance. We see the few step in and speak up or see evidence of their watching and participating vicariously through another so we *know* they are there and do care. As mother to a son I want to see males actively included.

    14. Lisa D. says:

      Thank you, Dawn, for everything you do for the global community. You are a light for all of us.

    15. Lisa D. says:

      Takes the village. I agree.

    16. Justin says:

      I do not suffer from male infertility, but as a guy who is part of an infertile couple, I echo the sentiment stated above. Being a male in an infertile couple is, well, a pretty lonely place.
      I have dreamt about fatherhood for my entire life, my wish for children is a large part of my identity, and finding myself as part of an infertile couple was, for me, quite devastating. I was the driving force behind our journey to build a family. And yet, I have not joined an infertile fraternity, nor an online or an offline support group.
      Why? In some ways, it feels as if I do not belong. Men, according to cultural stereotypes, are not supposed to seek their fulfillment in childrearing. Men rarely create support fraternities, as many men are more comfortable seeking warmth and support from women, rather than other men. Infertility treatment centers are mostly geared toward supporting the female partner (who in most cases is the driving force behind the treatments). I checked every IF support group in my area, including through RESOLVE, and ALL of them were accepting only female members.
      As far as online support groups, they are so female dominated that at times it feels as if I am intruding upon a conversation in which I do not belong. And, although some of my experiences are identical to those written about in the forums and blogs, others are quite different, I am unsure whether due to gender differences or not.
      For example, while my wife and many bloggers write about experiencing anxiety and tension around treatments, I have never experienced that. Many times my emotional reaction was of an intense rage (Which surprised me. I have never been a rageful or even angry person prior to infertility). Is that only a personal character flaw coming to light? Is that a reaction more common to men? Should this type of reaction be shared in forums which are mostly by and for “the sorority”?
      I am rumbling, so I better press the “submit comment” button, but to end this disclosure, a question to members of the sorority: Do you feel men like me as intruders upon your sisterhood? As welcome members? As both?

    17. Sara, well that was kind of my point. I suspect most need to talk about it or have help dealing with it, but no, I don’t think most want to talk about it. Makes me wonder if I’m just projecting my female approach onto the guys.

    18. Sara V. says:

      Do the guys really want to talk about it?

    19. Sara says:

      Dawn, I listened to the podcast yesterday and thought it was excellent as usual. As someone whose relationship has gone through the awful saga of severe male-factor infertility (I am now very grateful to be pregnant via sperm donor), I would love to hear a show devoted to the emotional aspects that are specific to men and couples facing male-factor IF. It can really put a relationship through the ringer (e.g., check out this blog post on another of my favorite websites: apracticalwedding.com/2013/03/using-a-sperm-donor).

      The comment that you reference above is right on the money: “I wish my husband could find similar support. He needs it so bad, but I need for him to have it too. I’m the only one he talks with. He hasn’t even told his family about his/our infertility. I have to hold all of our worry and pain as a couple and all the responsibility of deciding what to do.”

      Thanks for all that you do to bring attention to these issues.

      • Dawn Dawn says:

        Sara, I’ll be curious to read the comments to this blog. I’ve wondered about the specific emotional pain to a couple who experience male infertility. I suspect that it is harder to deal with for lots of couples because of the reasons you and the emailer in my post said. I look forward to hearing from others.

      • Dawn Dawn says:

        Oh, and by the way, congratulations on your pregnancy!!!!

    20. Lisa says:

      And, yes, I am proud of the men who show the courage to step in.

    21. Katherine says:

      Justin, I frequently feel very angry as we go through this infertility process. I think that infertility and the treatments can make you feel very powerless and out of control, and anger is an emotion that gives at least an illusion of control. It’s also a normal emotion to feel when you feel something has been taken from you. I would be surprised if more people were not feeling anger. I think that for women, we often have a hard time accepting or expressing our anger, it’s not socially approved for women to show anger.

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