Is this the right place for whining? (Long.)

NSTN · 08-26-2009, 03:21 AM

We are not doing very well with this. I need advice and support.

Our infertility journey began in April with testing for PCOS. In May, the results of a semen analysis spelled out the problem, and DH's tests with the geneticist will likely confirm suspected Klinefelter's. We will know soon enough for sure. If/once confirmed, that nasty little word "sterile" finally gets shoved down our throats.

Armed with the results of his SA and initial hormone b/w, I researched and found KS. My heart did a free-fall. This was in the middle of the night, while my DH slept (much like now). He is the eternal optimist, and knew nothing of these two words "Klinefelter's Syndrome." I am a realist, whose defense mechanism is to brace myself against life by knowledge. I knew that I couldn't just dump it in his lap. I needed to provide something resembling hope to grasp. So, I began researching case studies of KS patients successfully fathering their own children. They do exist. Yes, they involve mTESE, ICSI, and IVF--and a lot of luck, but those things mattered so little to us. My DH wants the chance to father his own children, regardless of how slim. He is a wonderful man, and I believe he deserves that chance.

A visit to a urologist, an RE, and a few months of time have come and gone. Donor sperm has been pushed, as well as adoption. We have no infertility coverage and not enough credit to go tens of thousands of dollars in debt. Hopefully, this will change, but I digress.

As I said, the results of the chromosomal assay will be back soon enough, but the fears are very real and ever-present. I will be emotionally paralyzed by thoughts of not wanting to have children with anyone other than DH one moment. The next moment, I will be crying over the thought of not having children period (and of not experiencing pregnancy). Then back again. I put myself on a path (mentally), and feel like I am taking 40 steps backward whenever I envision potential future children as not being DH's. Tonight, I decided that perhaps it isn't a path, but more like a cycle. A cycle which is exhausting me. As for DH's coping mechanism, let's just say it conjures images of birds and holes in the ground. Oh, and as an added bonus, the effects of KS are not treatable, curable, or able to be delayed. Time is against us.

Tonight, I just don't have it in me to be ultra strong. Yes, counseling has crossed my mind. DH is already seeing a therapist that specializes in this particular life issue. I'm supposed to go with him later today, for the first time. We're supposed to be discussing our communication. Personally, the insights and inspiration of people who have first-hand experience with this are so much more valuable to me. So, I thought I'd give this a shot.

ohjan · 08-26-2009, 09:01 AM

Hi NSTN,
My heart goes out to you. I don't have much advice, except that there are many people who have gone through similar experiences and found a solution that works for them. I would try to wait until you get confirmation from your Dr. There's no reason to jump the gun if it turns out your husband does not have KS.

I'm in a different situation because the partner I chose for life is someone that I knew I could not have children with naturally. We can't choose who we fall in love with (in my opinion) and I had to think long and hard about making a choice to commit and get married knowing that we would never have a child that could be related to both of us. It was harder than I expected and I still know, when we do have a child, that she will not be related. And, she plans carry our second child, which means I will not be a genetic parent of that kid.

Unfortunately you were not in a situation where you knew all of this up front, but it is obvious you love your husband very much, regardless of whether things go as you had initially planned. Just keep an open mind as you explore the pros and cons of each possible route. Also, remember that this can be more difficult for the partner that is the "cause" of the infertility and a KS diagnosis could further impact how he feels about himself. So, while this is hard on you, remember that you'll probably need to be the rock for him this time.

I think once you have all of the facts in front of you then it will be easier to face what is instead of what might be. Many people go the ART route, others donors, others adoption, and some choose not have children. If you two love each other as much as it seems you do, I'm sure you'll be able to take the time to listen on each other and find out what will be the best route for you both.

Hugs to you and best of luck,
OhJan

dmariehill · 08-26-2009, 11:38 AM

I just wanted to say that my heart goes out to you as well - I wish I had experience to share with you, I don't. I know this is so hard. And in some ways, you are probably dealing with the same emotions my husband is. I'm the cause of our fertility (or my age is). He's been completely strong and supportive while I struggle with the fact that I might not be able to use my eggs to have a baby - We're still trying - but each person's journey is their own. And only you two will be able to decide how to proceed.

For me, I've already cried and will probably cry again if what we're trying fails. But ultimately, I know we are committed to having a family and that we will have one - I just don't know under what circumstances yet.

I probably didn't help - but I'm thinking of you - sending compassion and strength your way - Best of luck to you - I wish I could offer more.

Alioop · 08-26-2009, 07:12 PM

NSTN:

I know it is hard when Dh does not want to address things. In my particular case, my husband had problems with something simple - motility. He was crushed and I allowed it to just let it go. I researched the issue and said ... well motility can change in time as we change our lifestlye (we were on the midnight shift; eating and sleeping were big issues). Things will get better in time with a shift change and healthier living. By the time we saw an RE (which was for him) I became the major problem. Now, I have to consider having to use donor eggs. What I am trying to say is I have been on both sides of the coin. I have been the one who let DH keep his head in the sand and am paying for the waste of time. And now that I am a major issue I feel horrible that I might not have a child that is genetically mine. I want children that belongs to both of us, and I have to think what is more important, having a child or having my child. My RE just gave me the news 2 days ago. Ultimately you should try counseling if you need help finding your way to a decision. Answers are definitely necessary and once you have them your path will come to you. If you need DH to come to grips with any facts then you must make that happen. I am living proof that time is in fact of the essence. I know it is tough, but I have faith you will find your way. Sorry this message is crazy, but this issue does not have an easy answer. Just know I am there in a similar situation and am here to support you if you need it!

NSTN · 09-04-2009, 12:35 AM

Got the phone call today. Confirmed KS. He was alone to take the news b/c I was at a job interview.

He said he wanted to drink, but didn't. I could tell that he really wanted to cry, but only a few tears would come at a time. We spent tonight playing spades at my parent's house, who don't know what's going on. It helps him forget it for a night. Tomorrow, he's going to have a "play date" with his two best friends, who also don't know what's going on. We seem to be focusing on the doors that are not completely closed, i.e. "Yes, it's KS, but that is not 100% sentence of sterility."

My job interview went well, and if hired, we will have insurance that covers fertility treatment as well as adoption. I think there is a 30-day delay, so the ball can start rolling as early as November 1st. I'm trying to believe in miracles.

dmariehill · 09-04-2009, 05:26 AM

I'm so sorry to hear that. Sending positive thoughts your way and hoping the job works out!

ohjan · 09-04-2009, 09:59 AM

Sorry to hear that as well. I hope things do work out for you. I have read a little about this and see that there is some hope. Also, what a nice silver lining that you might get an insurance plan that covers infertility! It will be helpful to not have the $ weighing on the decision about what is the best route for you & your husband.

Ferret Mommy · 09-04-2009, 10:45 AM

Many hugs.. my thoughts and prayers are with you both... I hope that a miracle will bless your family.

08-26-2009, 03:21 AM	#1 (permalink)
NSTN 0-99 post 2 of hearts Join Date: May 2009 Posts: 36	Is this the right place for whining? (Long.) We are not doing very well with this. I need advice and support. Our infertility journey began in April with testing for PCOS. In May, the results of a semen analysis spelled out the problem, and DH's tests with the geneticist will likely confirm suspected Klinefelter's. We will know soon enough for sure. If/once confirmed, that nasty little word "sterile" finally gets shoved down our throats. Armed with the results of his SA and initial hormone b/w, I researched and found KS. My heart did a free-fall. This was in the middle of the night, while my DH slept (much like now). He is the eternal optimist, and knew nothing of these two words "Klinefelter's Syndrome." I am a realist, whose defense mechanism is to brace myself against life by knowledge. I knew that I couldn't just dump it in his lap. I needed to provide something resembling hope to grasp. So, I began researching case studies of KS patients successfully fathering their own children. They do exist. Yes, they involve mTESE, ICSI, and IVF--and a lot of luck, but those things mattered so little to us. My DH wants the chance to father his own children, regardless of how slim. He is a wonderful man, and I believe he deserves that chance. A visit to a urologist, an RE, and a few months of time have come and gone. Donor sperm has been pushed, as well as adoption. We have no infertility coverage and not enough credit to go tens of thousands of dollars in debt. Hopefully, this will change, but I digress. As I said, the results of the chromosomal assay will be back soon enough, but the fears are very real and ever-present. I will be emotionally paralyzed by thoughts of not wanting to have children with anyone other than DH one moment. The next moment, I will be crying over the thought of not having children period (and of not experiencing pregnancy). Then back again. I put myself on a path (mentally), and feel like I am taking 40 steps backward whenever I envision potential future children as not being DH's. Tonight, I decided that perhaps it isn't a path, but more like a cycle. A cycle which is exhausting me. As for DH's coping mechanism, let's just say it conjures images of birds and holes in the ground. Oh, and as an added bonus, the effects of KS are not treatable, curable, or able to be delayed. Time is against us. Tonight, I just don't have it in me to be ultra strong. Yes, counseling has crossed my mind. DH is already seeing a therapist that specializes in this particular life issue. I'm supposed to go with him later today, for the first time. We're supposed to be discussing our communication. Personally, the insights and inspiration of people who have first-hand experience with this are so much more valuable to me. So, I thought I'd give this a shot. __________________ Me: 26, mild PCOS maybe, anovulatory DH: 25, oligoasthenozoospermia Prognosis: not good.

08-26-2009, 09:01 AM	#2 (permalink)
ohjan 100-199 post 3 of hearts Join Date: Aug 2009 Location: Phoenix, AZ Posts: 111	Hi NSTN, My heart goes out to you. I don't have much advice, except that there are many people who have gone through similar experiences and found a solution that works for them. I would try to wait until you get confirmation from your Dr. There's no reason to jump the gun if it turns out your husband does not have KS. I'm in a different situation because the partner I chose for life is someone that I knew I could not have children with naturally. We can't choose who we fall in love with (in my opinion) and I had to think long and hard about making a choice to commit and get married knowing that we would never have a child that could be related to both of us. It was harder than I expected and I still know, when we do have a child, that she will not be related. And, she plans carry our second child, which means I will not be a genetic parent of that kid. Unfortunately you were not in a situation where you knew all of this up front, but it is obvious you love your husband very much, regardless of whether things go as you had initially planned. Just keep an open mind as you explore the pros and cons of each possible route. Also, remember that this can be more difficult for the partner that is the "cause" of the infertility and a KS diagnosis could further impact how he feels about himself. So, while this is hard on you, remember that you'll probably need to be the rock for him this time. I think once you have all of the facts in front of you then it will be easier to face what is instead of what might be. Many people go the ART route, others donors, others adoption, and some choose not have children. If you two love each other as much as it seems you do, I'm sure you'll be able to take the time to listen on each other and find out what will be the best route for you both. Hugs to you and best of luck, OhJan __________________ Me - 26, DW - 27 TTC since 05/09 IUI #1 August 2009 (Clomid 100 mg CD 3-7 & HCG Shot) 1 Follicle - BFN IUI #2 September 2009 (Clomid 150 mg CD 3-7 & HCG Shot) 3 follicles - BFN HSG October 2009 - Tubes free & clear IUI #3 Nov 15 2009 (Clomid 150mg CD 3-9) 1-2 follies

09-04-2009, 12:35 AM	#5 (permalink)
NSTN 0-99 post 2 of hearts Join Date: May 2009 Posts: 36	Got the phone call today. Confirmed KS. He was alone to take the news b/c I was at a job interview. He said he wanted to drink, but didn't. I could tell that he really wanted to cry, but only a few tears would come at a time. We spent tonight playing spades at my parent's house, who don't know what's going on. It helps him forget it for a night. Tomorrow, he's going to have a "play date" with his two best friends, who also don't know what's going on. We seem to be focusing on the doors that are not completely closed, i.e. "Yes, it's KS, but that is not 100% sentence of sterility." My job interview went well, and if hired, we will have insurance that covers fertility treatment as well as adoption. I think there is a 30-day delay, so the ball can start rolling as early as November 1st. I'm trying to believe in miracles. __________________ Me: 26, mild PCOS maybe, anovulatory DH: 25, oligoasthenozoospermia Prognosis: not good.

09-04-2009, 09:59 AM	#7 (permalink)
ohjan 100-199 post 3 of hearts Join Date: Aug 2009 Location: Phoenix, AZ Posts: 111	Sorry to hear that as well. I hope things do work out for you. I have read a little about this and see that there is some hope. Also, what a nice silver lining that you might get an insurance plan that covers infertility! It will be helpful to not have the $ weighing on the decision about what is the best route for you & your husband. __________________ Me - 26, DW - 27 TTC since 05/09 IUI #1 August 2009 (Clomid 100 mg CD 3-7 & HCG Shot) 1 Follicle - BFN IUI #2 September 2009 (Clomid 150 mg CD 3-7 & HCG Shot) 3 follicles - BFN HSG October 2009 - Tubes free & clear IUI #3 Nov 15 2009 (Clomid 150mg CD 3-9) 1-2 follies

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08-26-2009, 11:38 AM	#3 (permalink)
dmariehill 0-99 post 2 of hearts Join Date: Aug 2009 Location: Georgia Posts: 22	I just wanted to say that my heart goes out to you as well - I wish I had experience to share with you, I don't. I know this is so hard. And in some ways, you are probably dealing with the same emotions my husband is. I'm the cause of our fertility (or my age is). He's been completely strong and supportive while I struggle with the fact that I might not be able to use my eggs to have a baby - We're still trying - but each person's journey is their own. And only you two will be able to decide how to proceed. For me, I've already cried and will probably cry again if what we're trying fails. But ultimately, I know we are committed to having a family and that we will have one - I just don't know under what circumstances yet. I probably didn't help - but I'm thinking of you - sending compassion and strength your way - Best of luck to you - I wish I could offer more.

08-26-2009, 07:12 PM	#4 (permalink)
Alioop 200-299 post 4 of hearts Join Date: May 2009 Location: Chicagoland Posts: 295	NSTN: I know it is hard when Dh does not want to address things. In my particular case, my husband had problems with something simple - motility. He was crushed and I allowed it to just let it go. I researched the issue and said ... well motility can change in time as we change our lifestlye (we were on the midnight shift; eating and sleeping were big issues). Things will get better in time with a shift change and healthier living. By the time we saw an RE (which was for him) I became the major problem. Now, I have to consider having to use donor eggs. What I am trying to say is I have been on both sides of the coin. I have been the one who let DH keep his head in the sand and am paying for the waste of time. And now that I am a major issue I feel horrible that I might not have a child that is genetically mine. I want children that belongs to both of us, and I have to think what is more important, having a child or having my child. My RE just gave me the news 2 days ago. Ultimately you should try counseling if you need help finding your way to a decision. Answers are definitely necessary and once you have them your path will come to you. If you need DH to come to grips with any facts then you must make that happen. I am living proof that time is in fact of the essence. I know it is tough, but I have faith you will find your way. Sorry this message is crazy, but this issue does not have an easy answer. Just know I am there in a similar situation and am here to support you if you need it!

09-04-2009, 05:26 AM	#6 (permalink)
dmariehill 0-99 post 2 of hearts Join Date: Aug 2009 Location: Georgia Posts: 22	I'm so sorry to hear that. Sending positive thoughts your way and hoping the job works out!

09-04-2009, 10:45 AM	#8 (permalink)
Ferret Mommy 10000-15000 post ace of hearts Join Date: May 2005 Location: In My Place Posts: 10,907 Blog Entries: 42	Many hugs.. my thoughts and prayers are with you both... I hope that a miracle will bless your family.