[pining4apeanut]

Hi,

Some of you may recognise me although I must admit I havent been on here for a long time, been trying to "forget" our problem, but its not happening, I posted on here a long time ago our fertility problem and now I'm posting again in the hope someone out there, maybe a new member is going throught the same as us and can give us some advice.

My DH and I have been ttc for 5 years, we havent had any treatment as such, my DH has had 2 sa's and we went to a genetic clinic where we were told of the problem, we have never heard from anyone again.

our problem is MF, my DH has marked oligospermia due to Y chromosome structural abnormality, his buccal cell smaple ( I dont even know what this means?) shows mosaicism for a different structurally abnormal Y chromosome (distal Yq deletion, but single copy of distal Yp) ( My apologies for all this but I am typing from the letter we received 2 years ago)

We tried to block it out and continue on and hope we would conceive naturally but so far after 5 years of desperate trying its a no go, I would like to type part of the letter so anyone out there who has the same sort of problem may be able to advise us, all we were told in laimants terms is that it is not possible to have a boy and a girl may be born with turners syndrome, heres part of the letter:

" The situation could therefore, of course be assessed from chorion villus biopsy at 11 weeks gestation if the couple did acheive a pregancy and, indeed, we would recommend CVS to check for turners syndrome or Turner mosaicism ( quite apart from the Y chromosome structural abnormality) in that situation, however the other option is could be to explore PGD with reimplantation of blastocysts in which one cell had been taken off at the 8 cell stage and shown to have 2 X chromosomes, in other words PGD could be possible to ensure the couple would have a chromosomally normal girl.

Again I do apologise for this rambling but we dont know where else to turn we went to our GP and they didnt really know what all this meant, I am hoping and praying that one of you can help me, I feel at my wits end and the desperation we feel as I'm sure all of you do is driving us apart, please help me

Lots of love

Piningforapeanut xxxxxxxxxxxxxxxxxxxxxxx

 

[SerenBach]

Sorry I can’t help but I didn’t want to read and run. 

This crazy world of IF can make you feel very alone and that it’s only happening to you. I can understand your desperation but what we have learnt is that you need to talk and take strength from each other – IF is a couple issue.

I hope someone can help – have you had a follow up appointment with the consultant yet?

Good luck 

 

[pining4apeanut]

No we havent, I noticed on the letter that they were gonna arrange to see us again in 6 months, that was 2 years ago................ DH and I were so gutted about initail diagnosis, I dont think we read letters properly, we just got on with painting, weekends away, work, anything to take our mind off of it to be honest. Do you think I should still try and get that appt?? even though it should of been 18 months ago? After all it was their error, they never got back in touch.

Thanks for replying, I would be amazed if anyone could help us xxxxxxxxxx

 

[pining4apeanut]

P.s just thought, does anyone think I would have better luck posting somewhere else on the site?, thanks  p4p xx

 

[SerenBach]

There's no harm in getting back in touch re: the appointment that never arrived. At the very worst they might put you back on the waiting list. It sounds like you need answers to your questions. Also I have found if you are doing things to be proactive it makes you feel more positive about the situation.

With regards to posting somewhere else ...  what about the Pre Treatment section on the Peer Support board. Have you been referred to a Fertility Clinic – perhaps you could post on the board for your clinic/PCT you should find that in one of the Location boards. It’s worth a go.

Good luck – fingers crossed someone will be able to help you.

 

[KerryO]

Hi Peanut,

Firstly  it doesnt sound like a good place to be and I'm angry with your clinic for leaving you out there. The wording of their letter ... 'of course'. Of course WHAT? They're making it sound like all this gobblygook is obvious when it so isn't. I should imagine even doing a google search (which is probablyw hat I'd do) wouldn;t throw up any understandable answers for you.

I think you definitely need to go back for a laymans explanation if nothing else. I shouldn't think the 18months delay matters, its still a follow up. Even if you have to call it a 'first consultation' appointment then do that, just take all these letters with you as if you were a couple coming from another clinic for the first time. You really do need some answers hunny and a better understanding or you'll never know what the next step needs to be.

Its very understanadable that you've had a break from it all we've done the same, our last tx was this time last year and we just got to a point where we couldnt think about it anymore. Now you're feeling a bit stronger you need help assessing where you are and what to do. That's what you pay them for!

Best of luck, sorry I couldnt be any help with the technical stuff I hope you get some answers soon.

Kerry 

 

[fox mulder]

Hi - I don't have any medical training but as far as I know the buccal cavity is the mouth so I think they are probably talking about a DNA analysis from a cheek swab - you know the sort of thing where they shove a cotton bud in your husband's mouth and rub some cells off the inside for analysis
To be honest I think you need to get a proper medical opinion on this and this is probably not the place to get it.Why not go back to your clinic and ask them to explain it to you in terms you can understand ? I'm sure you could get one of the doctors to explain it to you in terms you could understand - doctors are real people too. You aren't going to get anywhere by ignoring your issues and if you make yourself look stupid then so what ? - I don't think anyone is going to laugh at you. I am really sorry to hear about your problems but it does sound like you could have a solution if you bite the bullet. FF is full of stories from women who seem to have kept putting off the issue and it doesn't sound as if you really want to become one more sad story. If all else fails you could always consider using a donor to start a family

Regards

Fox

 

[leebs]

I would recommend making an appointment with a genetic counseler.  They are VERY good about explaining what all of that means!  I work with a pediatric geneticist and that is a big part of her job.  It can be very helpful.  I think that would be the first place to start.  Once you've answered those questions, you can move on to the CVS versus PGD debate.
--leebs

 

[Claudine]

I have read that some men with Y deletions are able to father children naturally (and the deletion is passed on to their sons) so I don't blame you for trying.  However, after 5 years, I'm sure you are wanting to look at other options.  I take it you are ready to consider assisted reproduction? It is possible for men with Y deletion to father children through ICSI, I know of one couple who have a DD. 

She hasn't been on the boards since but perhaps she'd respond to a message?

annarose

I'll look to see if I can find anyone else.

 

[Claudine]

In fact this couple also have Y deletion

http://www.fertilityfriends.co.uk/forum/index.php?topic=137770.0

Chartered if you're reading, congratulations on the good news and all best wishes for happy and healthy 9 months!