Dealing with Klinefelter's Syndrome / XXY? Come here for friendship and support

[theclarks8687]

I know its cliche but you gotta stay positive. That is what my DH keeps telling me anyways. And try the clomid with home insemination if its possible.

 

[faithbabies]

we start donations tomorrow....i probably wont get my surge for 2-4 more days after that but we start early...he will donate every other day until i say done lol this month we are going to go a little bit longer as i feel like i ovulated late last month. fxd!

dust to everyone.

 

[theclarks8687]

Yay I'm praying for you!

 

[silverbell]

Thinking of you all.

Faith - lots of luck this cycle

 

[faithbabies]

thank you TheClarks! and i'll say a prayer for you as well! we need all the dust and prayers and positive vibes we can get



thank you Silverbell...hugs to you

 

[Stardust1]

Hi all, how's everyone doing? Hope all the uk ladies are enjoying all the jubilee celebrations x
My follicles hadn't grown at all today cd14 so my cycle has been cancelled, I'm so upset, it's the second cycle in a row to be cancelled now. I hate this feeling of limbo and that I am at the whim of the drs decisions. They are saying I'm going to have to up my dose of glonal f to 75iu daily next cycle and just pray it doesn't make my pcos go bonkers, which the nurse said is quite a strong possibility. If i get 3 follicles they will do a follicle reduction and if I get any more than 3 follicles they will cancel again.
I'm beyond fed up now

 

[theclarks8687]

I'm so sorry you are having so much trouble star, are you going to try again in June?

 

[drmscometru]

Hello Ladies,
I felt compelled to share my story on this board after reading all of your posts. My story is very much like all of yours. My husband and I got married in our late 20's. We told ourselves we would wait a year before we started trying to have children, well we made it 6 months and then we were hard at work. We did everything a couple TTC does, ovulation kits, counting days, etc etc. After 6 months to no avail we still weren't pregnant. I assumed it was my fertility problem right? It's always the woman, turns out I got the dreaded call that most of us on this thread I'm sure have received. "Your husband has zero sperm count". What?!? Can it be a mistake? Maybe, come back in and let's retest. 3 sperm samples later we were looking at chromosome test results and learning what Klinefelters Syndrome was. We were told that we would never have biological children. To say we were crushed would be the wrong word that came later. Shocked and in disbelief maybe? How could this be true? My husband went through all the same emotions other women on here explain. He felt bad for me, asked me if I would leave him because I didn't sign up for this and he would understand. That time in our lives looking back seems like such a dark time, filled with tears and hurt, uncertainty, endless researching, paying fertility experts literally 10's of thousands of dollars to give us the miracle baby we were praying for that consisted of both our genes. We met with a world renowned Dr who assured us that if we did the TESA with Icsi that we could have our babies we dreamed of. My husband of course was willing to do anything. We went forward with his surgery, which looked terribly painful. All waiting on baited breath for the nurse to come in and tell us they found sperm. That day the nurse did rush in, in tears to tell us they have found sperm! We were overjoyed to say the least! We then followed up that procedure with a transfer after several of our embryos made it to day 3. We even had 1 to freeze. We were anxious to get the results of our transfer. I started spotting but tried to keep the faith. Unfortunately our first cycle was unsuccessful, it ended with the start of an early period.

Onward and upward though right? We waited until my body could physically recover and scheduled our FET for the embie we had frozen. The transfer was a breeze, frozen is so much easier than starting over with fresh IVF cycle. This time no spotting, got my first beta and expected the worst but our prayers had been answered. We were pregnant! My betas kept coming back doubling and tripling! We were so unbelievably excited!

Then the day came for our first ultrasound, that day I just had a sinking feeling in my heart. My cute husband tried to keep me upbeat and positive. As I laid there on the u/s table and the tech searched and searched for a viable pregnancy, after 5 minutes of looking we were told that there was no baby, just an empty sac. I had what was called a blighted ovum. I think going through that was harder then just a plain negative from day 1.

We were at our darkest moment, no more embryos, my husband would have to go through the surgery again, we would have to come up with another 10k. We were sunk. Falling into a deeper and deeper depression I started looking into donor sperm. My husband and I talked about it for a long time, it was not an easy decision and there were times when we were both on different pages about it.

It's so complicated when you're trying to decide in the beginning to go forward or not. You have so many questions, will being pregnant with a donor feel the same emotionally? Will special moments be tainted because you'll wonder how your husband is feeling and if he's sad? How often will it cross your mind? How will it affect the childs life? What will people think? Who will we tell? Family? or not even them? Goodness all of those questions seemed so important then....

But... I'm here to tell you that they aren't.

Our second chapter in this is why I can tell you that confidently. We moved forward using donor sperm with IVF. I got pregnant the first time! We now have a beautiful, energetic, amazing little girl who is the love of our lives!!! More than we can explain! All of those burning questions fade so quickly when that baby gets here! If you are stuck in a bad place about using donor sperm I hope my story helps you.

I wouldn't change our story for anything, truly. It made us so much stronger and now that we're through it and have our daughter we are just like every other family out there with a toddler. We're not thinking about donors, chromosomes, failure, right or wrong. Nope, we're thinking about potty training, big girl beds, and how in the heck we're going to get that binky away from her! Life is about so much more! I promise you all it gets better and when I say better I mean it. We are scheduled to start our next cycle in August and we are so excited!

My heart goes out to all of you who are on here, and those who are reading but scared or embarrassed to reach out. I know now what you are going through seems so hard and it is but you will be lifted out of this and when that happens it will all seem like a distant bad dream.

 

[theclarks8687]

Thank you for sharing such a beautiful story.

 

[silverbell]

Hi all, how's everyone doing? Hope all the uk ladies are enjoying all the jubilee celebrations x
My follicles hadn't grown at all today cd14 so my cycle has been cancelled, I'm so upset, it's the second cycle in a row to be cancelled now. I hate this feeling of limbo and that I am at the whim of the drs decisions. They are saying I'm going to have to up my dose of glonal f to 75iu daily next cycle and just pray it doesn't make my pcos go bonkers, which the nurse said is quite a strong possibility. If i get 3 follicles they will do a follicle reduction and if I get any more than 3 follicles they will cancel again.
I'm beyond fed up now

I am so, so, so sorry star I've had 1 cycle abandoned and it was absoultely horrendous to deal with. Just that stupid 2ww with nothing happening. Us KS sufferers are used to the waiting, but once you start treatment you just want to keep going - we've had enough of the waiting already. I can't imagine how you must be feeling. Hopefully they'll keep a very close eye on you with lots of scans next time around so they can ensure your ovaries 'behave' with the higher dose. At least your clinic with do follicle reductions - I soooo wish mine offered that.

Thinking of you and knowing there's nothing I can say to make you feel better. Hope the next couple of weeks flies by for you - try and do things you enjoy and that fill your time. I personally found it made the time go more quickly.

Hello Ladies,
I felt compelled to share my story on this board after reading all of your posts. My story is very much like all of yours....

Our second chapter in this is why I can tell you that confidently. We moved forward using donor sperm with IVF. I got pregnant the first time! We now have a beautiful, energetic, amazing little girl who is the love of our lives!!! More than we can explain! All of those burning questions fade so quickly when that baby gets here! If you are stuck in a bad place about using donor sperm I hope my story helps you.

I wouldn't change our story for anything, truly. It made us so much stronger and now that we're through it and have our daughter we are just like every other family out there with a toddler. We're not thinking about donors, chromosomes, failure, right or wrong. Nope, we're thinking about potty training, big girl beds, and how in the heck we're going to get that binky away from her! Life is about so much more! I promise you all it gets better and when I say better I mean it. We are scheduled to start our next cycle in August and we are so excited!

What a fantastic post. Thank you so very much for sharing this beautiful story, drmscometrue I'm sorry you had to go through all that heartache, but it's so lovely to hear how it all turned out in the end and certainly it's reassuring for me and I'm sure for the other ladies on here going through donor insemination/IVF. Thank you and I'm so pleased to hear you have such a lovely little girl to fill your lives with happiness.

 

[Stardust1]

Agreed, fabulous story made me cry, it's sounds like you've had so many knocks but it just shows that we can't loose hope. Thank you for that xx

Thanks theclarks8687 and silverbell your support means so much to me. we are trying again as soon as af arrives they may give me provera in a week or so as they are not sure I'm gonna get af naturally as my lining is so thin. I've got to wait for a call on Friday after the drs have reviewed my case. X

 

[theclarks8687]

Is it normal for your lining to be thin?

 

[Stardust1]

No but then my cycles are quite long (up to 50 days at times) and my average ovulation day is cd24 so my lining usually has a lot longer to build up, i guess its just a sign of me not responding to the drugs. The nurse said that now I've just stopped the gonal f everything will shrink back down so she wasn't sure I'd bleed at all. They said to wait a week or two and they'd either rescan me and start afresh if my lining is still thin or start provera to induce af. It kinda confused me a bit, but I guess they know what they are doing.

 

[theclarks8687]

Wow I'm sorry you are having to go trough all that. I was lucky in the fact that my cycle was normal and 30 days long with oing midway but with the fibroids I had to be on painkillers to get through a period. Now I wish I had the pain if meant a normal cycle again. I haven't had one since the mc.

 

[Stardust1]

Im sorry you suffer so much with fibroids, sounds horrible. Have they given you any explanation as to why your cycle hasn't sorted itself can they induce af? I've never ever had regular cycles, in fact I only had about 5 periods until I was about 21 due to my pituitary tumour, I'm now as normal as I'll ever be due to the drugs I'm on but unfortunately it's resulted in me now having osteopenia in some of my bones due to lack of estrogen, some days I just think enoughs enough, I'd like a little bit of good luck now and again. I work in a secondary school and in the last 2 weeks I've found out about 3 girls that are pregnant, they are not mature sensible girls, in fact one is verging on being a bit bonkers and is in care herself, these little babies are not going to have happy starts in life one is only 14 the others are 16, I just don't understand why the world is so unfair at times. I must have been a nasty person in a past life if karma is chucking all this back at me!
I've had some spotting this morning, cd16, I've no idea what that's all about????

 

[theclarks8687]

Omg I have a 19 yr old girl in my life who is living in a crack trailer that the inside is covered with dog feces and roaches. Her bf who she's been dating for 6 months is an unemployed wannabe dapper and they live with his mother. Just found out 2 weeks after my mc that she pregnant and due in Dec. I try really hard to not get resentful at God for things like this. But it is very hard at times.

 

[silverbell]

If any of you find the cure to not being resentful and jealous of people who are pregnant who don't deserve to be/don't appreciate it ... please let me know!

Thinking of you all. Stardust and clarks, I do hope AF is just around the corner for you.

 

[theclarks8687]

Lol I wish I knew, and u try not to be resentful, I really do, it is just hard sometimes when I see certain things.

 

[clarkea]

Hi Ladies, how are you all doing?
Im so sorry to hear that things havent gone as planned for some of you.
The stors that dreams can come true wrote was inspirational. The fact that they found some sperm is a hope for me.
My DH and i have an app on 26th of this month, we get to find out a date for his op for sperm retrieval. i hope so much that its quick as we only ever moved hospitals as they said there was no waiting list. But here we are again waiting!!!
I never used to think i had much patience but i must have hey?
My sister gave birth a few weeks ago to a prem baby. Only 2lb 6oz. Shes still in the hosptial and will be for a while. When i found out she was pregnant it hurt a bit but not too much as she had been trying for years to have a baby so she knew to some extent how hard it is when you really want a baby.
I have two girls in my office at work who are pregnant. When i found out they were pregnant i was devestated as they both said they didnt want kids. I then found out that my brother in laws girlfriend is pregnant which totally hurt. i know it might be selfish but i cant help but feel probably the same as most of you feel.
I just bought a house so trying to concentrate on that while we wait for app's.

i do have hope that they will find sperm when they do the retrieval.

You girls as so much further down the line that i am so when your saying some things i dont understand lol.

baby dust to all you lovely people xxx

 

[theclarks8687]

You are further then me when it comes to getting a date for sperm retrieval. I hadnt mentioned this but we had DH checked out some more and his FSH levels are off the charts high so we were told likely there is NO sperm at all anywhere but we have an appointment at the end of the month to speak to a specialist in Klinefelters 2 hours away.