hi everyone,
I was just wondering if theres any1 else out there who`s DH has klinefelters syndrome? or going thru the same kind of experiences?
we have had all the usual tests etc they have thankfully found nothing wrong with me just my DH has this k.syndrome and the only symptom he has is the no sperm part! which is devastating the fact the my DH bottles everything up anyway is making it all seem worse.
we have been advised to have TESE and see if they can find any sperm, has any1 been thru this? my DH isnt keen as hes petrified about it hurting etc i was wondering if any1 could share there experience of it for him so he can see if he does go thru with it hes not alone (so 2speak), they say its a 30% chance of finding sperm. if not then it will be the donor route for us.
Yes my dh has Kleinfelters syndrom also so i know exactually how you are feeling. He was diagnosed 8 months ago after many visits and tests and we he now finally has answers to alot of his questions.
We too have found no sperm after many samples and had a specialist appointment tonight to plan our next move. He is going in for the biopsy soon and we have ordered donor sperm as a back up if the worst should happen. The donor sperm had to be imported from USA but that was our only options due to the current UK laws on identifying your donor. Even if they find sperm during this operation he is not likely to be enough for more than one cycle and so we have make a painfull decision to have to possibly use ds.
My dh was told to stop drinking alcohol and has done so now for 8 months to give what sperm he MAY have a chance at life. This alone has been hard and trying to keep it from people who may already have their suspicions about us not having children yet is even more difficult. Usually its the females that stop drinking but not in our case.
We werre told by our specialist tonight that the operation itself takes est 3 hours and he may need to stay in overnight depending on how he reacts to the medication. We are now waiting for the letter to advise date of operation just want to have the unknown finally resolved so we can move on.
I was surprised to see your message as I thought I might have been alone on this one so if you need to chat further let me know.
Hi KK,
thanks 4 ur reply, im so glad ive found sum1 going thru the same things. ive often looked on this site and have never seen klinefelters syndrome mentioned! thort i was all alone.
i`d never heard of it b4 the diagnosis. we`ve known 6months now, it was finally a relief to know why we wasnt getting pregnant but was devastated to be told theres no cure so to speak. does ur DH have any other symptoms part from the infertility? mine does`nt appear to.
how does ur DH feel bout having the op? did they tell you what the success rate was? my DH is not keen atall on having it as the 1st gyno at our local hosp put him off by saying no1 had had it done b4 etc, now weve been referred to another hosp 4 donor sperm and the gyno asked if he wanted the op just incase there are any immature sperms so im trying to help him decide that its worth a try, cause then you know you have tried everything possible to have your own baby and if it doesnt workout then you do have the donor route.
we were told we would have to wait till april for donor sperm if we go that route but i was expecting it 2 b alot longer with the new laws. our lives seem to resolve around appointments and what if`s at the moment and theres so much waiting btween it all its very frustrating at times.
were waiting for a letter4our next appointment on whether to have the biopsy or go4donor. hope you get your date for your DH operation soon.
My Husband was diagnosed with Klinefelters 7 years ago. He has had 2 TESE since then in which they have extracted sperm both times. With this sperm we have done a total of 8 cycles and we also have enough sperm left over to do a few more. Our last FET cycle we were successful which sadly miscarriaged @ 9 weeks. I have just found out l have PCOS which l feel may have been the main cause of the lose. My husband was also a bit nerves about the op and apart from feeling a little sore for a couple of days came out on top and says he would not hesitate to do it all again if he had too. The op took all of about 20 min and he was home 4 hours later.
I am finding more and more couples that are having successful TESE, so dont give up hope. By the way we also have donor sperm as backup but to date have never had to use it.
I have just read your posting and I thought for a minute that I had written it as my dh has klinefelters and I have been told a have a mild case of PCOS and you and I have the same first name!
My dh has put off having the TESE as he is worried that he will hear the news he has dreaded all his life so we have opted to go with our back up donor sperm to take the pressure off us both. Not an easy decision but think it is a sensible one given our chances of finding any sperm at all are about 5-10%. He has done about 6 sperm tests with no live sperm found and with the limited numbers and the genetic test we are likely to have very few if any to proceed more than once/twice so donor sperm was most likely going to be our only option. The way we are looking at it is more than likely we will have to use ds so if there is a miracle then we will be over the moon, don't want to have too many expectations as I know we have many more heartaches to come yet, this is the first hurdle.
Sorry to hear you miscarried at 9 weeks that must have been heart breaking, every day just leading up to my first injection seems like an eternity away!
Can I ask if you have told family member/friends about your dh having klinefelters? and if so what has the reaction been?
How strange it that, they say we all have a double out there somewhere.
Reading your reply took me back a few years ago. It sounds like you are having the same thought process l had at the beginning. When my DH first saw the specialist our option was donor or adoption. I brought up the whole fertility thing with him, in which he pushed to the side and she at this point he wanted to concentrate on starting DH on testosterone injections. After that appointment l was pissed. After a few months of testosterone injections l decided to contact the IVF clinic myself. On our first visit to the clinic, with mind you, one of the top IVF specilists in Melbourne, told us that the chance of retrieving sperm was very slim if any at all. We were then told that the operation consisted of removing DH testicle and even then the chance of finding sperm was 5%, he then went on to say that he would be blown away if sperm was to be found. DH had felt that removing a testicle just added to the blow of Klinefelters and that he wasn't prepared to do that. DH and l later spoke about this and also opted for Donor Sperm. We then went on to doing 2 cycles of IUI with donor. By this stage we decidied to change clinic to be closer to home and this is were are real journey began. We met with a new docotr that was excited to do a TESE and told us that the procedure did not consist of removing a testicle but instead removing a piece of tissue from the testicle. With hearing this we opted to go ahead. Like your husband, DH had similar feelings, what if the results were bad. DH was nerves but again with alot of soul searching DH decided he needed to know one way or the other. He already had multiple sperm tests all showing negative, so l guess he was half way there with bad results. DH felt that as much as he didn't want to hear those words "no sperm found" in a way this is what he needed to know one way or the other to truely move on. He felt that as must as it would hurt,this would then help with process of grieving.
I am the type of person who puts it all out there, so yes my family and friends know the whole story. DH has only told his parent and sister. He does not feel comfortable enough to tell the rest of the family as he comes from a very manly family and with the whole XXY thing, he felt wierd about. My family have been very supportive and dont see DH any different however l feel DH parents, his mum more so has alittle trouble, l dont know if there is a little guilt there or what but they say they are supportive but l dont 100% believe it. At the end of the day it really doesn't matter.
I wont go on and on as this post is already too long, but l all l can say is please consider the TESE again, as you wont regret it even thought at this point you may feel it to hard to visit. For your mental state it does alot to help move forward and even though it may not feel like it now, it may remove some of the stress you are both feeling now. The result wont change the way you feel about each other it will just put things in a clear light for you both.
Good luck with your decisions
Cathy
Melbourne Australia
PS I Please feel free to email me personally if you would like.
Great to hear back from you and again it feels like we are mirroring each other but you are 6 years ahead in the process. My dh was diagnosed about a year ago and put on testosterone straight away but has since been removed due to nil sperm.
We too were told different things about the two operations and dh main concern is that he was to loose all testicular tissue which was a great concern to him. He is worried that he will no longer be a "man" along with having a extra chromozone (XXY) he feels like he is different. Only his father knows as he is a doctor and we haven't told his mother yet as we dont want to worry her even though she knows somethign is up. None of my family know as dh wants to keep it between us, this is very hard for me as none of my family know we are even trying and let alone going through ICSI and I have no-one to talk to and get very frustrated. My brother and his wife are currently going through IVF and my parents have offered to assist with finance and here I am doing it also but all on our own. If only they knew!
I am very pleased to have found someone who knows what I'm going through as klinefelters is rare and it is the male side of things as opposed to the female. Females tend to be more open and involve their family but as this is not my body I do not have that choice. I'm struggling to even tell dh my feelings some days as he feels SO GUILTY that he has done this to me (the whole IVF process) and I don't want to add any more stress to that.
I have so much more to write and would love to email you privately but not sure how that works?
It sounds like your dh is still trying to come to terms with the whole situation. We still have issues that raise its ugly head once in a while, l could easily say that at least once or twice a year we will revisit the whole klinefelters thing. My dh also brings up similiar comments like, 'am l a man?' & 'men dont have extra x chromosones!'. I do have to say in our situation finding sperm has helped a little, dh feels like he can now at least contribute something. We have been through conversations where dh has felt bad and said things like he feels guilty for holding me back. When we first meet l made it clear that l wanted a large family, and dh now feels that if we weren't together then l would most likely have a brew in toe by now. All l can do is reasure him that it is he l want to be with and we will tackle any hardle that comes our way. Sometimes l feel sorry for him, putting up with my mood swings. It is a strange feeling to be torn between a man l love and a dream of a family l have so longed for. I guess the key for us in surviving the past 6 years is communication, l tend to lay it all out there and believe me l have said some hurtful things in the past. l guess dh knows where l stand and is now just over the past 12 months starting to open up himself about his feeling, this is when l say nothing and listen very carefully. We have been dealing with this issue for a while, and we both know we have given it all we can, so if in the near future donor sperm is the only option for us, we will take it knowing that we tried our best. At the end of the day a parent is a person that is there for a child day and night, those that will love him/her no mater what.
I am wondering how you can keep sane not talking to anyone about this. I strongly feel that you need someone to talk to about this whether it be a best friend or your dh. God know how many times l have had to call on my mother to vent, as l didnt want to add pressure to my dh. As l had said in a previous post dh's extended family does not know about the Klinefelters but they do know we are doing IVF. We needed to tell them one christmas as we were always getting questions like "when are we going to see babies?" every time the family meet. When we told them about the IVF, we were asked what was wrong and our response to them was "unexplained infertility" and to this day no more questions have been asked. Your brother and his wife would be the the most likely choice as them of all people would at least understand the presures of IVF, l too am always here if you need to talk.
Do you sometimes sit there and wonder how life ended up like this?
As for you l read you have PCOS, l just found out Nov/Dec 2006 and am still trying to get my head around it. I see my new ivf specialist this Wednesday and l wonted to ask her about putting me on Metformin, as l have read alot about the benefits with ivf. Are you on anything? and how are you coping with
it?
hi cathy,
sorry 4 the delay havent been online 4awhile. thanks so much 4 ur reply and advice it is nice to know there are other people out there in similar situations.
glad ur DH tese were successful, were you ever put off the op though? our 1st gyno gave us no hope wot so eva and practically told us it was pointless in having it done, but we were set on having it dun as wanted to try everything we could b4 the last resort options, but after she talked 2us she totally put my husband off but at the time we thought she knew best as that was her job it was only when i looked on the internet and gained more knowledge about it that we decided that option was not closed yet.
we then saw another gyno who totally encouraged us to go through with it if thats what we wanted, we now have a pre op talk feb 22nd and the op should be sometime in march/april.
it sounds like you and ur DH have been through alot, sorry 2hear of the miscarriage&PCOS.hope things work out 4 u both in 2007.
thanks very much 4 the advice, will let you know how we get on.
DH contacted his specialist last week and has asked for a date for his TESE so we are making some progress on his behalf. The first appointment for the operation was cancelled by dh as he got cold feet but i think he is more confident now so fingers crossed.
My dh has always suspected that there was somehting wrong (lack on facial hair and other side effects) and had some relief to now know what it is but on the other hand upset by the side effects it causes as it affect both of us now. B4 this was diagnosed we have always said, we would do ANYTHING it takes to have a family and no matter how much it costs we will have a baby one day. He feels guilty that it is me who had to go through the suffering as I have the injections and the treatment but I have told him I married him for him and what ever happens we are in this together.
I feel we communicate well and he will very supportive to me when it all happens but I sometimes feel I lack in support for him. This is not through any resentment on my behalf but have the habit of saying the wrong things at the wrong time which is my fault and no-one elses. I just think once he has the TESE we can move on, either way we will know. He is worried about the ££ as it is not cheap (£5k) but as I have said it is the price you pay for piece of mind.
As for the family not knowing, I too am from the southern hemisphere :-) but live in the UK so therefore don't see my parents regularly so can fight off the comments if need be. however we do get the odd sniky comment and saying we shouldn't wait too long blah blah blah but have managed to convince them we have a 5 year plan and not to worry. I would desperately love to tell my mother and sister but they would want to know why and the details of it all and we feel that one day if/when we use donor sperm we will need to tell family then so in the meantime are waiting till we have made some progress. Also they would want regular updates and with the rate in which this whole process takes I might feel more pressure from them i have been able to talk to dh father (who's a doctor) but as it is his son I feel limited to expressing my emotions too much!.
I often ask myself what have we done to deserve this and others have it so easy! For all the money we have/will need to throw at this we could have a very comfortable life but that is all being put on hold for something that cost majority of the popluation NOTHING! When I need to vent I tend to use this website as I know others can relate and feel like I am not moaning and feeling sorry for myself.
I found I had PCOS on my first appointment with the IVF clinic when they scanned me so have known for about 6 months. I have been told that the only effect it will/should have is I may get overactive overies when I start my injections (sorry not familar with all the terms). This means I may get very bloated when my eggs are developing before retreival.
Well the ball started rolling for us yesterday I had my fist injection (Prostap) and now have to await for my period to arrive....tick tock tick tock! Feels like a long time coming and I know the games have only just begun. they told me I may be a little emotional and sure enough I felt like I have wanted to cry about 6 times today just while watching tv and for no reason - very strange feeling I must say!
Thank you so much for responding to my postings you really have been an inspiration to me and knowing I am not alone is so releiving as for both of us (and Claire) we have to deal with the male factors also and building them up where we can as they too have had a blow in life!!
Are you only doing IVF or have you tried ICSI as well? When is your next cycle?
Claire, lt is so nice to hear from you. You asked, was DH ever put off about the op and sadly the answer is yes. We too were told the same thing that it would be a waste of time and the chances of finding any sperm was 0-5%. The way in which the doctor explained our chances it was clear it would be wasting our time and put DH through pain for what. Like you we were talked out of it as we felt that doctor knows best and the fact that we were all new to it and didn't know much. For me looking back at the whole situation l feel in some way l became a bit selfish as l was focusing on making a baby, as long as l held that baby in my arms l was looking for the fastest way. By the end of the appointment we opted for donor sperm and ended up doing 2 IUI cyles before deciding to revisit the TESE again. Thankfully we moved clinic's and meet a new dr that was exsited to go forward with the TESE and explained the whole op in a different way. It makes me so mad l hear that couples are still be put off by their dr not to have the TESE done. If it wasn't for sites like this couples would not stand up and challenge their dr. I am glad to see you have an appointment and have decided to go ahead with the TESE. In our case we did it as we had nothing to lose and alot to gain, so we thought they were good odds to take. I guess at the end of the day you need to kept an open mind and hope for the best, not always do they get good results but isn't it better to have tried than to not have tried at all. Good luck with your appointment, l would love for you to keep me updated.
KK: That is great news to here about your dh reconsidering the TESE. This whole process can be a cycle of emotions and guilt. We have our husbands feeling guilty for putting us through this process and then on the other hand you have us (or me) feeling guilting for not being able to give DH the child he so longs for, so what can we do but try try and keep trying. l guess at the end of the day as a couple you need to agree that its no ones fault but instead believe there is a reason for what is happening and believe me l am still trying to figure it out. DH and l have been married for 8 years this feb and we have been together since we were both 16 (about 16 years ago), and l feel closer to him than ever (lol l do have my days though l am still human). You talk about having the TESE and moving on, that is what it was for us, it was a way of closing a chapter in our book other wise you would be left there wondering what if we had of....... However when l read how much the TESE was going to cost you l nearly fell over, did you say 5k is that 5,000 pounds? If it is that is around $12,500 in australian dollars. I am blown away because for a TESE here in Australia it only costs us $220 which is 99 pounds there abouts. It costs us for a full IVF/ICSI cycle around $2,400 which would be around 958 pounds. Am l calculating this right? As for the PCOS I too developed hyperstimulation when cycling. l became very bloated and at times l swear l could feel my ovaries through my abdomon lol. Each IVF/ICSI cycle resulted in 18 - 20 eggs retrieved however l have never had any more than 7 eggs continue to egg transfer. Before l do my next cycle i am going to try to sort out my hormone imbalance again caused by the PCOS, l feel this may have alot to do with the lack of success and the quality of eggs. Who knows l will try anything l think my give me a better chance. DH and l am looking at doing another IVF/ICSI cycle in May and am looking forward to it.
So you have just started your first cycle, are you excited? So what's next?
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