Have you ever heard of Klinefelter Syndrome? Neither had I until last week. It’s relevant here because men who have it are usually sterile.
Klinefelter occurs when a male baby is born with an extra X chromosome, sometimes more than one. Usually males have one X and one Y. Females have two X’s. That extra X wreaks havoc with the boy’s system. The sexual characteristics that usually come with puberty come late, if at all. They have small testicles, sometimes grow breasts, sometimes have higher voices and don’t grow facial hair. They may seem more feminine than other boys. There are other aspects of the syndrome, such as emotional and cognitive delays, personality problems, weak muscles and a tendency to develop osteoporosis and bad teeth. The symptoms can be treated to a certain extent with high doses of testosterone, but hormone treatment does not restore the ability to produce sperm.
I recently read a book called Living with My X
, written by Stephen Malherbe, a South African man who has Klinefelter Syndrome. Well into his teens, he still looked and sounded like a little boy and didn’t know why. After he got the diagnosis and was treated with testosterone, he grew to normal size and went through a late puberty, but his problems were not over. Malherbe has been married and has had many relationships with women. Most of those relationships failed, partly because he had trouble communicating and partly because sooner or later he had to tell the women he was infertile. The first woman he told was his fiancée a couple weeks before the wedding. He shouldn’t have waited that long, of course, but how do you say something like that? They went ahead with the wedding, but the marriage didn’t last long. Neither did his second marriage.
, written by Stephen Malherbe, a South African man who has Klinefelter Syndrome. Well into his teens, he still looked and sounded like a little boy and didn’t know why. After he got the diagnosis and was treated with testosterone, he grew to normal size and went through a late puberty, but his problems were not over. Malherbe has been married and has had many relationships with women. Most of those relationships failed, partly because he had trouble communicating and partly because sooner or later he had to tell the women he was infertile. The first woman he told was his fiancée a couple weeks before the wedding. He shouldn’t have waited that long, of course, but how do you say something like that? They went ahead with the wedding, but the marriage didn’t last long. Neither did his second marriage.Most of the women he told about his problem said it was all right. They could adopt children. But sometimes they realized that wasn’t going to be enough. Sometimes his personality got to them. He was always leaping into new schemes, unable to sit still. He has also suffered a variety of physical problems stemming from his Klinefelter Syndrome. In later years, he has found someone to love, but Klinefelter continues to affect his life.
Klinefelter Syndrome and other genetic variations can manifest themselves in various ways. They do not always cause infertility, but KS usually does.
Here’s a shocker. Approximately one in 500 male babies is born with one or more extra X chromosomes. The degree to which it affects them varies. Some have no idea until they want to have children and discover they’re infertile. What if a woman falls in love with such a man? What if he can’t give you children but he’s the sweetest person you have ever met? What if you don’t find out until you’ve been married for a few years?
There are a lot of reasons people don’t have children. This is one most folks don’t know anything about. You can find more information at the Klinefelter Syndrome support site.
Have you ever known anyone with Klinefelter Syndrome? I’d love to hear your comments about this.
Childless by Marriage 
My husband and I found out about his extra X chromosome when we were trying to get pregnant a few years into our marriage. Of course, I can love someone with an extra X. I don’t remember my marriage vows being dependent on the existence of sperm or a perfect genetic makeup. I believe they involved for better or worse and in sickness or health. Is being CNBC difficult? Very much so. And so are his health problems. But, I wouldn’t trade him for anyone or anything. My husband is a wonderful man who was dealt a tough life situation. He has shown amazing strength and resilience and I become more proud of him every day. While the extra X is a part of his life, it does not define who he is. My husband is a hard-working farm supervisor, tractor & truck aficionado, a Christian, a faithful family member, and amazingly manly husband. Thank you for noting how common (1/500) this syndrome is and yet how little it is acknowledged. When diagnosed this was a double whammy for us. Not only did we find out he had a lifetime of medical issues to deal with, but the door to children slammed shut. Most infertility blogs, FB sites, and support groups deal with the IVF cycle and other treatments. Those are not even an option in this situation. We had to face the fact that there was not even hope and almost no social support to lean on. We grieved the loss and by God’s grace have been able to embrace the amazing and beautifully untraditional life He has planned for us.
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Dear XXY wife, thank you for this beautiful comment. What a beautiful love you have, accepting each other for everything you are. God bless you.
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Hi, I just came across your post. My story is very similar to yours. I was wondering what health issues has your husband had? I’m not aware of anything my husband has gone through that is xxy related. I’m just really curious about medical care. I would love to stay in touch.
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Hi. My husband didn’t have it. This was a friend. He has had serious heart problems in his 60s. Before that, I think he was pretty healthy although dangerously overweight.
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Good Morning,
I have been married to an XXY man for over 25 years. I too accepted the diagnosis at the time of planning a family. Due to total infertility, we opted at the time to have a family member donate sperm. This brought us a wonderful baby boy (now 16) and joy (between husband and wife) for a little while. I wish I had a wonderful story to tell, but truth be told, as my husband is not a man of faith, communication, or emotional attachment capability; the marriage is in extreme distress. I tried to be as supportive as possible. I even thought, heck, we could have the time of our lives never worrying about birth control. Truth is part of the effort needs to be made by the other partner and depends on how much they can relate to the fact the wife is going through it with them. I accepted the untraditional road God placed in front of us. I would do this again for the right relationship because it was a beautiful thing to do, but the emotional detachment these men go through (which is part of the reason they have such relationship issues) is devastating to those standing by their side. It is also an awful crippling thing to thing to live through when you go down the road to bring joy and happiness to someone else’s world to never have the emotional connection with that person you were willing and happy to do it for.
Wife of XXY above is very lucky her spouse is a man of faith. I believe that is half the battle and may she and his relationship be blessed every day! I know how strong a woman she is because there are many many challenges that go along with XXY. Many women are faced with finding out about Klinefelter’s at the time of family planning. Yes, this is devastating news to the man diagnosed. However, it is also life-changing for the woman. They are faced with the choice of never having children with the man they vowed their life with OR finding other methods (as we did) to experience the fullness of who they are. I’ve yet to find an “Al-anon” support group for the spouses of XXY men to support the woman behind the man.
I read a bit of your book “Childless through Marriage” and I have to say I can relate to a lot of the feelings you experienced. I went through years of everyone around me having children. Feeling those feelings. I was married 13 years before we even started trying. They were extremely hard years. Baby showers, co-workers having babies, families having babies. Then the diagnosis. Women suffer the struggles of this diagnosis alongside the man. Those are not just earthshattering words given to the man. It is also given to the woman. The women need to have a support group forum, somewhere they feel comfortable to express their confusion, fears, struggles, and joys. I am on the KSA website forums and I’ve yet to find the support. I am considering starting one.
I do know my husband loves my son. My experience is that he related to him much more when he was a child. As soon as my son became a young man, in need of the male role model, my husband had problems relating and doesn’t even know how to try. He would do anything for him, but as I said before, the emotional support or connectedness is just not something some of these guys are capable of.
Its a heartbreaking experience for a marriage to endure.
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Chris, Thank you so much for sharing this. I can relate to a lot of what you say here. I wish you all the best.
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Hello, thankful to have found this and hoping that it is still current. I am with a man with Klinefelter. I’ve known him in a friendship capacity for many years. We started dating two years ago and at first, it was nice just to have someone who treated me like a queen (after many horrible relationships). Now I wonder if that was a selfish motive on my part. I love him more than any man I’ve ever loved. He is my best friend. However, I find that that special love that a woman has for a man is not there. I believe it’s because of Klinefelter. Most of the masculine traits that attract a woman to a man are just not there–broad shoulders, nice teeth, narrow hips, no breasts, genitalia appropriately sized for age, facial hair. . . those things are not there. When we first started dating, I knew he looked ‘different,’ but I didn’t know why until he brought it up. Then, at a family event (and many times thereafter) someone said is that a woman? Things changed from there, and although we are still together, I am struggling with attraction. May seem superficial, but I’m struggling with the type of love a man needs from a woman. I thought perhaps reading other posts and getting feedback would help in some way….
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Mrs. Tee, not too long ago, I dated a man with Klinefelter’s, too. As with your guy, he treated me well, but I needed that maleness that was missing. I had to break up with him. Ultimately I think you’ll find you too need more.
For readers who don’t know, Klinefelter’s is a condition where a male is born with an extra X chromosome. His male sexual aspects never fully develop. These men are usually infertile.
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My post is responding to Mrs. Tee’s response. I have been married to a man with Klinefelter’s XXY for 30 years. My marriage is at its end, which is sad news, but I can say I have struggled many years with this exact issue. I found it difficult to bond with him as well. Great guy. Sweet, wouldn’t hurt a fly, would help anyone, but the low sex drive was difficult and left me stressed and struggling. If your partner is open-minded and could go for help about it, it may change. My husband was not willing to do this, so ultimately it did split us apart. I am more than willing to speak with anyone about this. You have my permission to share my email.
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Thank you, Chris. People don’t know much about this, but it can make relationships really difficult. For those who want to contact Chris directly, her email is pkmoo2299@gmail.com.
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Like I said, I was fertile … I will say later in life I felt I had a fem side to me… however, need to chat with a doctor. My issue could be a chemical imbalance. I do have breasts and not much body hair. Very small in that area as well….
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I agree too that there is a detectable fem side. Some women are perfectly fine with that and others have a difficult time. These are the struggles LA partners go through which is why to have support is so important.
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Not true. My sexual appetite has been there from my first injection at age 18. I have the characteristics of any normal man, plus more. I’m highly sexed, probably a tad too much, hence why it ruined a lot of my relationships. I felt my sexual organs were never connected to my soul, considering that’s where it all starts. So after my 300-plus sexual encounters including tantric experts, energy healers–and I never ever slept with any prostitutes, I didn’t need to as I had the gift of talk–I still have no closeness to me, still feel a distance from myself and my feelings.
So, not all men with KS are the same, ladies.
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I agree that not all men with KS are the same. We cannot negate that this is the case with some. I fully understand the woman’s point of view here and always felt sex drive and being able to truly connect were major issues for which women/wives/girlfriends do not have support. I was married for 30 years. We created a family, both agreeing to bear a child using family donated sperm.
I would love to say it worked out 100% but sadly, due to the disconnectedness and lack of desire to work on these issues, it did ultimately lead to divorce.
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Ms. Tee, yes these are very legitimate struggles from the “partner’s” point of view. I struggled with many of these myself. I found the lack of sex drive very difficult. I also found the emotional detatchment even worse. I know my husband always refused therapy. It is not easy, and I understand the need to find “partner” support. My personal email is pkmoo2299@gmail.com. Feel free to personally reach me. I am not a doctor, but I am a good ear to listen.
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Hi Ms. Tee.
I understand this in many ways. I had many of the same feelings myself. My husband was never looked at as “female,” but all the other characteristics I have experienced. It is true if this man is someone you will spend your life with, you will need to support him. It is critical for the relationship to survive that you both work through the obstacles. I will say BOTH must focus and work on them. Some with KS are very open and talkative and others (like my husband) will not ever speak of it. Bottom line: open communication. Do not suppress your feelings, and know we are here to help and support you as well. Partners have their own stress related to this, and you will need support too. My cell# is 973-370-3553..or email at Pkmoo2299@gmail.com. I’m not a doctor but someone to help and listen as I have lived it.
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@ Ms. Tee, I’m actually a man who lives with KS and I’m 28 years old as I speak today. I’m also like you… a man who dated his best friend, a female. I’ve known her since we were in elementary school. On our last year in junior high school, I moved to the States, while she stayed back home in her origin country. We got connected again through Facebook. I’ve known her in a friendship capacity for 10 years. We’ve known each other and went to the same school together since kindergarten. I’m also a man of faith. I believe to save myself until I get to tie the knot with her. She’s my everything, my girlfriend and my best friend at the same time. I’m afraid of losing her. However, I can’t come clean to her right now with what I live with. I wish I could, but I don’t have enough courage to tell her yet; it seems too soon to break this relationship apart. She said she loved me the way I am and will always support me in any way possible. I’m grateful to have a woman to say that to me, besides my own mother. I was diagnosed with KS when I was 25 years old. I’m pretty much clueless on how to explain to her when the time is right. Maybe I’ll spend a good amount of time with her together until I can’t bear to see her going through the difficulties that I have to go through, and in this case, I will deal with it alone. I’m 6 feet tall, weight about 175 pounds. I look normal from the outside appearance but in actual reality, I’m skinny fat. I have low self-esteem and I tried to fight it over the years. Maybe I didn’t try hard enough. I will do my best to lose my belly fat and lose more weight.
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@Vincent. I was married 31 years to an xxy man. We found our way in life as a husband and wife and as parents. A future and children are difficult topics. Our choice was to have a family member donate and I was inseminated. It was a beautiful gift. I am telling you this because we are now divorced. It was the lack of emotional connection that took place. My advice would be love is love. People can endure more than we give them credit for. Instead of walking away or closing off, be open and honest. Talk about it with her. Give her the chance to choose to walk the road with you. Understanding each other’s feelings is important and part of committing to each other. There are ways to have a full life. Our son is now 19 and off to college. In my case it’s a shame the emotional detachment happened, but that was a choice he made. Don’t shut off from what is your reality. Instead, embrace it and allow people in so you have all the fullness of life. I hope everything works out for you. I have confidence you can do it.
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I’m currently trying to get my husband to go to the doctor in order to either confirm or rule out KS. He doesn’t want to talk about it and definitely does not want me to talk to anyone we know about it. I’m going to have to talk to someone. I’m worried about his health aside from how it affects reproductive health.
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Keep trying, Ila. There are issues that definitely need to be addressed.
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Ila,
I understand your concerns and have been married to a man 30 years with XXY. There is an organization that provides a lot of information about Klinefelter Syndrome. The Support Group is mostly for those with Klinefelter’s. The website is Klinefeltersyndrome.org. I understand the emotional detachment you are referring to as well. It’s very difficult when you can’t seem to break the barrier they put up. Try the website. It will help with the medical questions you may have. As a partner of one with KFS, I know it’s hard to find partner/spousal support. I am not a doctor by any means but can definitely lend an ear to your side of the fence. Chin up! Keep trying.
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Can relate to your concerns. I have not been diagnosed but am about to chat with my doctor. However, we did have children. That is what confuses me
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Hi, I hope by now you have gotten your husband in to see an endocrinologist to get his testosterone checked. He should be getting shots by now. You will see a big improvement. I am 51 and was diagnosed with KS at 20. I too never said a thing about it. It wasn’t anything people talked about back then. There is a site on FB, XXY. Look it up for help. Good luck.
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Thanks for the good advice, Chris.
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I am a partner of a KS Male. I have found this very difficult to cope with. Our story began about four years ago when my partner suffered a major stroke which he is still recovering from. I kept him positive during this time because i believed we still had a life to live. I lost the person he was. He has not worked since, and I have to support us both. Two years ago, it was confirmed he had KS. This has devastated me. I kept strong during the stroke because I believed we still could get on with our lives, but since the diagnosis, I have struggled to cope. It is like everything has come crashing down on me. I feel very alone, as he has not fully understood the full impact of this diagnosis, but I have stood by him, as he needs a lot of support during this.
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Louise, I’m so sorry you have to go through this.
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Hi Louise,
I am very sorry you are going through such a difficult time. I do understand how this feels, as my husband was dealing with his diagnosis and the death of his father, with whom he was VERY close too. They worked side by side every day. I named this my “double whammy.” I understand the part where you feel your husband doesn’t understand the “depth” of what’s being told to him. I can only speak for my husband, mine withdrew. ” “Checked out” of reality. It’s a way he coped. I am not a psychologist by any means, but I can always be an ear to listen to you. My email is pkmoo2299@gmail.com. You may email me directly. Also, the organization I worked with for my husband is Klinefelters.org . Stefan Schwarz was a wonderful man, dealing with KS himself and has guided me during the most difficult times. Louise, I can even talk to you about the infertility part of it. I understand that devastation too. Email me and I will be happy to tell you my story. It may be inspiring. I hope to hear from you soon. Smile. There are others who do understand.
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My wife did. I have had no issues. The long legs did not happen, and we had children. My breasts and small penis were not an issue. I enjoy being small and not like most, make use of it, nudge nudge
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Neil, thank you for sharing this with us.
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Neil, thank you for bringing the male perspective in. Every couple faces the challenges differently. It’s wonderful to have perspective. I pray all find the help they seek. It’s a difficult thing to find out and support is key.
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My spouse has been doing testosterone shots for seven years now. I met him four years ago, I knew about the KS, and everything was great. For the past two years, I believe he has been not taking the same dose or trying to come off of the testosterone because he thinks he does not need it, I believe he does need it. Without it or a low dose of it, he is beyond tired. I read most of the comments, I noticed no one posted about mood swings. Personally, in my relationship, it is as if I walk on glass or on a roller coaster.. did no one else have this problem? I always thought it was because of taking testosterone shots… just curious if anyone has had this problem. Anyone is welcomed to email me if needed if they do not wish to talk about it on this post. Thanks,
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My friend with KS certainly has mood swings. He also makes a lot of impulsive decisions. As far as I know, he doesn’t take anything.
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Hi Nicole. Yes there is a noticeable difference when they are on or off testosterone. I noticed without it seemed there was no motivation. When they’re on medication, I noticed there is more motivation and they feel better. The unfortunate part is they feel they are fine and don’t need it. They tend to go back and forth. Therefore the mood swings. I am not a psychologist by any means, but lived it for many years. My thought was it’s a psychological battle within them plus the drug effects. Any chance he’s open to counseling? My ex was never open and kept the mentality “nothing is wrong with me” or “I won’t be labeled” instead of learning what he could do to understand and learn about himself. I resonate completely with you. When on the sideline, we feel the rollercoaster effect of it.
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My ex took testosterone. He became raging and aggressive. He tried to cut back but it was not helpful. The side effects from the testosterone on his personality only aggravated his depression. I tried my very best for almost 20 years, but in the end he became violent and got fired from jobs. He refused therapy or to even consider he played a part in the problem. I am so very sorry you are in this situation, it really destroyed me.
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I wish i had advice to give. As with anything the person who has it needs to agree to get help. Agression is a testosterone related symptom. Not sure if they would but the Klinefelters.org website for support could truly benefit anyone with KS.
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Is this comment thread still active? I’m a KS male in my 30s and currently having a rough time in my marriage. I wasn’t diagnosed until about 10 years into my marriage. Although my symptoms don’t seem to be as extreme as what some others experience, my low sex drive and difficulty emotionally connecting with my wife are causing a lot of stress in my marriage. Are there any couples reading this who successfully overcame those issues? Any advice for me?
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The thread is still active, although I haven’t had many comments lately. I will mention it on my blog tomorrow and see if we can shake anybody loose. My experience with a KS male went badly. We’re still friends, but it took years for him to accept that we can’t be together. It’s definitely a challenging thing.
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Hi Seth,
I experienced a lot of this in my marriage. I can only speak about the wedges that drove us apart and hope these things help you find a road to connection. In my experience, the emotional disconnect is the hardest thing your partner will deal with. I truly tried for many years to re-connect. The thing I have to stress here is it does take two to make it work. Emotional needs are every bit as important as sexual ones. It’s what makes the act of sex intimate between a couple. It’s the depth of feeling that is missing. It may be hard for you, but if you want to reconnect it will take couples therapy. You both need to put in a good solid effort understanding the others’ needs. You have to understand where your emotional blocks lie and why, and she needs to understand how to communicate effectively what her needs are. Step by step you walk through it. Accepting couples therapy is a step that you are both showing the other how important you are to each other. It’s an open forum.
I suggest you each see the same therapist, separately AND as a couple. That allows freedom to speak without the other in the room then discuss together what triggers there are that need to be overcome. Unfortunately in my case, my ex didn’t “feel” until after our divorce. We always were more friends than husband and wife, but in my heart I felt he was blocking me after his diagnosis. Don’t let this happen to you. I always felt couples therapy could have saved our marriage if he was only open to it and gave it an honest to goodness try. I wish you both peace and love. Feel free to reach out anytime. We may be few, but you are not alone in this. You already took the first step…keep going!!😊
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Thank you, Sue and Christina, for your thoughts. We actually just started getting some counseling. I had been reluctant to go at first out of a feeling that counseling wouldn’t help, but I changed my mind on that. I think the hardest part of discerning the issues is figuring out which parts are due to KS and which parts are just normal/regular husband and wife issues. Hard to de-tangle that, for sure, and especially since I don’t have some of the proto-typical KS symptoms.
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My ex didn’t have all the symptoms either. Emotional detachment. Low sex drive, difficulty with reading and comprehending. He steered away from learning new things, especially if studying was concerned. As a child, he dealt with frustration and anger in school. As an adult, he suppressed those feelings and taught himself to shut off. Part of emotional detachment. These are mostly what he experienced. Willingness to recognize and work on these if you have the same is important. I am very happy you are going to counseling. It’s a step in the right direction. Keep in touch if you need anything. Also, did you find Klinefelters.org? Great resource for you. Stefan Schwartz is a great gentleman who started building the organization years ago. I can also be a good resource for what your wife experiences if she ever feels she needs support too. I remember feeling very alone like no one understood. So please reach out here and I will provide my personal info to you. Have a wonderful weekend.
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I believe my husband has KS. We are infertile and it is male factor. My husband does not talk about his condition. I found out inadvertently (found and read some medical reports) that he was treated (testosterone injections) in his early 20s because of the attributes associated with KS (though no mention of KS itself). When we first started dating (in his 30s) and well into his early 50s, his sex drive was strong and he didn’t have obvious physical features associated with KS. (As I became more aware of the symptoms, I have noticed some, legs that are disproportionately long, compared to torso.) With age, testosterone drops in most men naturally (my husband is now 64), but in his case, it has been very dramatic. He has muscle weakness, and though he eats very well, excessive upper body fat. He has had low libido for the past decade. I have never brought up KS to him, but I have talked to him about seeing an endocrinologist and possibly receiving testosterone. He is hesitant about doing so because of complications associated with testosterone (prostate cancer among the biggest concerns). But I worry that he is not getting the proper care by not being open about his condition. I know that certain problems like osteoporosis affect KS males. He is a wonderful man and highly educated. He does not exhibit the difficulty with reading, etc. that others talk about, quite the opposite; he is fluent in two languages and has reading knowledge and some comprehension of a third and fourth language, and he writes beautifully. However, I think that the low testosterone is also affecting his moods. He is an incredibly kind person, but increasingly easily irritable. I would love to connect with those of you who are either men with KS or wives of men with KS.
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Hello, Melissa here.
My partner has Klinefelter Syndrome xxxy. We have been together for eight years. He is my best friend ,the love of my life. It’s been a long hard road. But I find the love in my heart to keep going on. We don’t have children. That’s okay though. I just need some help, as he only knows two emotions. When he is happy, he is very happy. and when he is angry. he’s very angry. The problem I have is I need to teach him the in-between emotions and how to control his outbursts. Please help. Thank you.
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Melissa, this sounds like my friend with KS. He’s not so much angry as either crazy happy or deeply depressed. I don’t think you can teach anyone how to be, but I hope you can find a way to cope.
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I was married to a man with KS for almost 20 years. We discovered it when going through fertility work up. He had hernia surgery and the surgeon commented on his very small genitalia. I met him when I was very innocent and frankly did not know what “normal “ looked like. I suspect he and his mother knew and intentionally withheld this. He had a very low sex drive and ED. Again, my ignorance lead me to believe it was my “fault”. MD put him on testosterone which exacerbated his rages, depression, impulsive behaviors. We adopted 2 children, but he could not bond as a father. He was extremely insecure and jealous. He was emotionally detached, egocentric, immature, frequently got fired from jobs and relocated the family often. His behavior became violent on the testosterone, and he attempted to strangle me. I left with the children and divorced him. That was 10 years ago, and I am still heartbroken and feel guilty that I did not know or understand. I wish I could be forgiven for leaving. He dragged my name and reputation through the mud and is constantly striking out in jealousy and revenge. I wish him happiness and peace and want him to move along.
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I am so sorry, Denise. Not every man with KS gets violent, but it does happen.
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I suspect it was the Testosterone supplements, completely changed his personality.
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I have been in a relationship with a man with KS for almost 4 years. I know this may come across as paranoid delusion, but I felt the need to post something about it anyways….
I have noticed big changes in my physical body and my emotional/energetic self- my period cycle is totally out of whack, I am constantly breaking out (hormonal), I’ve gained 20 pounds, (even though I eat very healthy and haven’t changed my diet), my energy level and my sex drive has declined dramatically and I am having extreme challenges with my self esteem and confidence. All of these issues had never affected me like this before we started seeing each other. Now that we are together all the time, the issues have rapidly become worse. I know that thinking his KS could be related is quite far fetched, but I know that when women live together their moon times sync with each other…so that means that hormones send out signals, which doesn’t make my worries all that far fetched.
I just wanted to know if any other women (married to men with KS) have experienced this or if anybody knows if there is any research on this?
Thank you so much and God Bless
Yennifer
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I don’t know if this is scientifically possible, but I do know that stress can cause all of these problems, so maybe the stress of being with him is more than your body can tolerate.
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Unfortunately, my ex husband did not know he had KS. He had surgery for hernia repair and the surgeon asked if we were hoping to have children. When I answered “yes” he said “not with this man, he is probably sterile” and told me about KS. I was devastated. We both went into deep depression and KS became the elephant in the room, he was so ashamed and devastated, he refused to talk about it. Our PCP started him on testosterone and he became raging, impulsive, bullying. We adopted 2 special needs toddlers,but the damage was done and irreconcilable. During this marriage, I gained 60 pounds from fertility treatments and donor IVF. It is still a source of great pain and unresolved grief in my life.
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I’m so sorry.
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Hi Yennifer, is your partner on testosterone therapy? If so does he use something topical or oral? I was noticing some chin/moustache hair on myself after being married a couple years and looked at his Testosterone (Androgel) literature, and it says that it can transfer to other people if you don’t wash before they touch you. He had to apply it to his shoulders and upper arms and leave for 5 hrs, so we started making sure he washed before I touched him and my symptoms lessened, though it’s been awkward to have to not be spontaneous or stop to wash arms….. We’ve now been married for 15 years and I’m not noticing any further issues with myself. I hope that might help you.
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I just found this site and thread and I’m so relieved to not be alone. My husband and I were single until we met in our 30s and it was love at first sight. Fortunately, doctors had already informed him he was probably sterile and he told me so early on, so I knew what I was facing. But I didn’t care. I had finally found my man and I wanted to adopt anyway. Now a few years into marriage, (and after tests confirmed our situation) I’m still struggling with the emptiness. He’s the best husband I could imagine, we’re still as in love as ever, but the emotional ups and downs, the health issues, and watching everyone else raise families while we go on alone remains a struggle. He decided after marriage that he wasn’t ready to adopt because he’s afraid he’s not ready to emotionally care for the child. I get it. But I don’t know how to be okay. Just when I think I love my life the way it is, I fall apart again. It’s not fair to him for me to be sad, it’s not his fault, he can’t help being himself and he’s the best husband he can be with this condition. He’s been willing to talk through things with me, but it hurts him every time I bring it up. I don’t want him to feel like less of a man, he really doesn’t have all the KS symptoms others deal with, his physical features are wonderfully masculine. I just need to talk with others dealing with this and there’s so few people talking about it! It doesn’t help that when others hear we can’t conceive, they always assume I’m the one that needs treatment or that IVF will help—so awkward and frustrating! Going to check out the KS website as well. Thank you.
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Hi Leah,
Yes, I remember feeling the same way. The KS website should be a good resource for him to find treatments and support for him. The partners of men with KS, well, there was little support. I found in my experience there was withdrawal from speaking on the topic. That leaves us empty and feeling like our feelings aren’t understood. My advice to you would be to seek a good psychotherapist. One that knows of KS and can help support you and your feelings. It is life-changing for the partner with KS, but it is also life-changing for the partner standing by their side. Seek a therapist and remember you and your feelings matter too and to take care of yourself.
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Thank you, Christina, for replying. After several years of marriage and silent suffering, it’s my first time to talk to other women who’ve dealt with this or even know what it is. I’m so grateful. I thought I was okay, I had no idea how painful and frustrating marriage and intimacy with a man with KS could be. I pray our love will carry us through. Holding on to hope that I can continue to find help on this journey and be a support to others too.
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Hi Leah, our story is almost identical to yours…. We met when I was almost 29 and he was 27 and married in 15 months. He knew about the KS and was already on testosterone treatment since puberty but although he told me he was genetically infertile, he didn’t tell me it was KS or that he was on treatment… His mom told me that a couple months before the wedding…. We thought we would adopt too, but he could never talk about it. His sex drive was also not good, and he had trouble with suggesting things for us to do together, and communicating in general…. About 4 years into marriage, he wanted to pray for healing and we got prayed over and believed he would be healed so he could have a biological child. Apparently it didn’t work, because I didn’t get pregnant and he still had to use the testosterone, and I felt even more rejected, though I always knew he loved me. A few years ago he was diagnosed with high functioning autism, which explains even more why he wasn’t more forthcoming with me because autistic people are even more prone to being afraid of discussing difficult topics. The reason I specifically mentioned autism is I noticed on the list of things that people with Klinefelter’s syndrome might be more prone to, there was ADHD, and some other learning difficulties and since they’re learning more and more about autism and how common it is, my guess would be that autism could also be linked with klinefelter’s syndrome. We learned so much from my husband’s evaluation, and it is really unlocking a lot of the puzzle of what is going on with us and helping us find solutions. It’s just a suggestion…. but it sounds like you are like me and know you’re with the right person and are just trying to find a way to have a better relationship. I don’t know if I said, but we’ve been married 15 years now.
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I too am a male with KS. My wife and I started out great, I didn’t find out about KS till I was 27, we were 1 year into dating at that time. It did not bother her because she already had children. All and all I felt normal besides being 6’3 and 145lbs; also I had a great sex drive. Fast forward to 40….yeah. She filed for divorce due to me being unaffectionate which probably isn’t the KS but the low sex drive that came along is definitely apart of it. My advice to KS guys out there. Take testosterone and stay on it, I never took it and now I am 40 and alone. I am scheduled to start taking it here soon due to being so tired, I could sleep the week away. Just remember guys naturally lose testosterone in their 40’s; Men with KS do too and it is 10x worse.
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Thank you for sharing your story and this valuable information.
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How disappointing and tragic. I am so sorry you had this experience. Unfortunately, my ex never disclosed his KS, I found out from surgeon when he had a hernia repair. Our PCP put him on testosterone and it was a nightmare…mood swings, rages, got fired from several jobs and became violent. KS is devastating.
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My boyfriend has a KS condition and after reading everything in here, I am just confused about whether to continue this relationship. He is nice, but it worries me a lot when his anxiety strikes –He is shaking. I am scared to leave him but also so scared to level up the relationship. What should I do?
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Sherlyn, I’m sorry you have to make this tough choice. No one else can decide for you. For me, my friend and I could only be friends, nothing more–and he wanted much more, but it was never going to work.
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Sherlyn, Like others said, it has to be your choice. Really allow your inner voice to speak to you here. Deep down you know whats right for you and your life. Do what your soul tells you to and you will never be misguided.
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