Dealing with azoospermia?

[twilliamssbt]

Twilliam - I guess 2.7% of 43.7 million sounds like a hell of a lot to those of us who have none, but it's hard when the doctor says that to you; giving you some good news and then taking it away with a negative. However, at least there are plenty for IVF / ICSI and hey, no harm in trying! It only takes one as we've seen with MumamdDad
xx

Yep, I know, I am not sure which was worse, the azoospermia result or some there but no good.

If we have to go IVF or ISCI route, time is ticking too quickly, am 33 next month and family history of early menopause at 38, NHS waiting list even with explained fertility may well be too long and we really can't afford the private route.

All we can do is see what Endo says about whether HCG will help, as that should only take a few months to conceive naturally.

Plus the fact we know he probably has some kind of genetic mutation on AIP gene, means our children could be pituitary giants, so that probably does not help his sperm at all.

I want to feed them a can of redbull and tell em to get on with it

 

[mumanddad]

The clinics are never speedy are they - we are still waiting for matts chromozone results from 3 months or so ago like we are going to listen to them tho.

I think they prefer to give you bad news!

 

[twilliamssbt]

The clinics are never speedy are they - we are still waiting for matts chromozone results from 3 months or so ago like we are going to listen to them tho.

I think they prefer to give you bad news!

The DNA result is being done by FIPA under care of Professor Korbonitz at St Barts and London Medical School, Acromegaly is rare enough but FIPA families are even rarer, so there is research funding for the project. If positive, all of his family will be tested too, it will mean that all his cousins and his sister could potentially develop pituitary gland tumours and his cousins children could potentially be pituitary giants.

All the family will have blood tests and MRI scans every 12 months if they are positive as early detection can be curative.

Unfortunately for my other half and his cousin, that is not the case.

 

[WANBMUM]

Thanks so much for your help girls
You have given me some really good advise on how to approach it. I definitely need to say its nothing serious initially as I dont want to give her a heart attack lol.
I have a feeling she knows something is up, even though she doesnt know we have been TTC, I am sure she has an idea, as we are married a couple of years now and she knows we have always wanted kids, so i am sure she is wondering.
Hope the rest of you are as good as you can be. good luck to those going for results tomorrow.

 

[KB38]

Possibily the worst day ever of my life. I know that sounds dramatic but it is how it feels. No sperm or spermatozoa found with TESA and the scientist in the procedure told the specialist that the cells looked DH has sertoli cell only syndrome. We've been told the only option is to go for donor sperm. Then no less than 5 seconds after I got the phone call from our specialist whilst I was in the waiting room, my BF sent me a text saying that she was pregnant for the second time (and now I'm sounding nasty but she didn't even want a baby until she was at least 7 months pregnant with the first). Then I got a call from the recovery nurse to come and see DH and when I got there was told that they "thought the news would be better coming from me" so I had to tell DH what I'd been told. Then we got told we had to wait two weeks for another appointment with the specialist.

I've cried all day but am now wondering whether that advice is a bit premature as I've just read that even in sertoli cell only syndrome, sperm/spermatozoa has been found in mTESE. I feel like I'm always asking for advice but do any of you have any suggestions about what I should do? I feel like my whole world has been turned upside down and the hits just keep on coming. I'm not prepared to give up but I don't have the emotional strength to be supporting DH and researching this myself today. My GP is arranging some counselling for us so I'm sure that'll help and, at the end of the day, I do know it'll all work out in the end.

 

[WANBMUM]

KB38 I am so so sorry you are going through this and can truly understand it is your worst day! I'm afraid I can't help in relation to research but I'm sure someone here will be able to. I can't imagine how you must be feeling.
Even though throughout this journey it can never make it easier hearing that news.
Try to stay strong together, break down together but hold onto each other, you have never needed each other as much as you do now.
Sending you love and hugs x

 

[WANBMUM]

Ps what a cruel blow getting that txt from your friend. I'm presuming she doesn't know your going through this. This happens to me all the time, always hearing bfp news at the worst times!!!!

 

[silverbell]

KB, I'm so very sorry. I had hoped to hear some wonderful news today.

From what we have read mTESE is better and more advanced than normal TESE and this is why DH is so keen to go privately and get the mTESE done. Because he wants to be 1 million per cent sure that there is nothing there, rather than him having the TESE and then doubting the result and possibly having to go through it all again.

DH and I have discussed and are prepared to use donor sperm, but we still know that if we find he has nothing there we will be absolutely horrified. I don't think you can ever prepare yourself for that, just the same as you can never prepare yourself for the azoo diagnosis.

I'm sure some ladies who have been at this point before will be along shortly to offer help.

In the meantime, stay strong and look after yourself and your DH. Thinking of you

 

[Sar187]

KB38, so sorry to hear about your results, Wish i could give you some advice but I really don't know all that much yet at this point. I can definitely sympathize with the friend and her bfp though, It can be very frustrating to see all the people who get pregnant and aren't even trying or don't even want a child. Hopefully the counseling can help you and your DH deal with some of the emotions that go along with this. Good Luck!

I actually got a little bit of good news yesterday. I know a lot of you are from the UK so not sure how much you know about US healthcare but the fertility clinic we are scheduled to go to is out-of-network for our insurance company. They have a much better success rate with Male factor cases than the in-network one and got much better reviews so we chose to stick with the out-of-network one the urologist referred us to and deal with them only covering 65% of expenses as compared to 85% for in-network(still better than nothing!). We also have a $10,000 lifetime max for infertility services. When talking to the insurance company yesterday to make sure we didn't need to fill out any paperwork to go out-of-network DH was answering some questions for the woman and was told that because of his situation if we could prove that his problem was caused by the hernia surgery he had when he was 3 they will waive the $10,000 maximum which would enable us to do more than 1 IVF cycle if needed!

This does raise a question though, how do we prove that the surgery caused the problem? Our initial thought is to get proof from DH's physician that he had the surgery as a child, and then maybe have the urologist actually perform an ultrasound to show there is a blockage. Any other suggestions?

 

[silverbell]

When talking to the insurance company yesterday to make sure we didn't need to fill out any paperwork to go out-of-network DH was answering some questions for the woman and was told that because of his situation if we could prove that his problem was caused by the hernia surgery he had when he was 3 they will waive the $10,000 maximum which would enable us to do more than 1 IVF cycle if needed!

This does raise a question though, how do we prove that the surgery caused the problem? Our initial thought is to get proof from DH's physician that he had the surgery as a child, and then maybe have the urologist actually perform an ultrasound to show there is a blockage. Any other suggestions?

That's great news, Sar! Very pleased for you.

I don't know about your questions, but I'd say that seems a good place to start. I think I'd be tempted to ring the lady again and ask how you're supposed to get proof - what they suggest. They must have come across that before and should be able to tell you what to do? Otherwise I've no idea, sorry.

 

[WANBMUM]

Hi girls.
Sar, I think silverbells idea to ring them back and ask what they would expect as proof is a great idea. Maybe they want a consultant or gp's opinion to confirm it or a report, do you think you will get that as the docs might be apprehensive to do so. Maybe his records say that already?
I hope you get what you need as that would be brilliant if you could.

 

[Sar187]

Well the Urologist told us he is 90% sure that is what has caused the problem, but that is based only on medical history and a physical exam. From what DH said the woman he talked to was thinking more proof than that, all she could give him though was to get more tests run. So I think we will start with proof of the surgery, a copy of the SA results and maybe talk to the urologist to see what he thinks.

I am letting DH do most of the talking to the insurance company though as the last time I talked to them they hung up on me because i got frustrated with them for asking the same question 5 times .

 

[Bookworm]

Possibily the worst day ever of my life. I know that sounds dramatic but it is how it feels. No sperm or spermatozoa found with TESA and the scientist in the procedure told the specialist that the cells looked DH has sertoli cell only syndrome.

I've cried all day but am now wondering whether that advice is a bit premature as I've just read that even in sertoli cell only syndrome, sperm/spermatozoa has been found in mTESE. I feel like I'm always asking for advice but do any of you have any suggestions about what I should do? I feel like my whole world has been turned upside down and the hits just keep on coming. I'm not prepared to give up but I don't have the emotional strength to be supporting DH and researching this myself today. My GP is arranging some counselling for us so I'm sure that'll help and, at the end of the day, I do know it'll all work out in the end.

Hi KB I'm really sorry... I know that this is a possibility, but there's just no preparation. I wish I knew more about the alternative testing, but I'm afraid I'm still learning - hope you get the answers though.

 

[Bookworm]

Thanks Debs for sharing you experience - sounds like quite an ordeal for your OH! I hope that's not how it goes for us as DH & I have our own business and time off can be very difficult.. Sometimes it would be lovely to be back in employment where you can be sick and it's someone else's problem!

 

[KB38]

Hi Bookworm, one of the nurses suggested to DH that rather than wearing a supportive strap, he'd be better off in regular jocks then an icepack and another pair of jocks for extra support. He's been relatively comfortable (at least not whinging as much as I expected he would be) .

 

[Deb111]

Possibily the worst day ever of my life. I know that sounds dramatic but it is how it feels. No sperm or spermatozoa found with TESA and the scientist in the procedure told the specialist that the cells looked DH has sertoli cell only syndrome. We've been told the only option is to go for donor sperm. Then no less than 5 seconds after I got the phone call from our specialist whilst I was in the waiting room, my BF sent me a text saying that she was pregnant for the second time (and now I'm sounding nasty but she didn't even want a baby until she was at least 7 months pregnant with the first). Then I got a call from the recovery nurse to come and see DH and when I got there was told that they "thought the news would be better coming from me" so I had to tell DH what I'd been told. Then we got told we had to wait two weeks for another appointment with the specialist.

I've cried all day but am now wondering whether that advice is a bit premature as I've just read that even in sertoli cell only syndrome, sperm/spermatozoa has been found in mTESE. I feel like I'm always asking for advice but do any of you have any suggestions about what I should do? I feel like my whole world has been turned upside down and the hits just keep on coming. I'm not prepared to give up but I don't have the emotional strength to be supporting DH and researching this myself today. My GP is arranging some counselling for us so I'm sure that'll help and, at the end of the day, I do know it'll all work out in the end.

Oh KB, I'm so sorry but please don't feel bad about asking for advice!! This is what the thread is here for - especially as it affects relatively few people. It is SO important to be able to talk to people who know exactly what you are going through.

My husband's op biopsy results said 'areas of sertoli cell only syndrome'. I don't want to get your hopes up unrealistically, but we were told that because it's a random biopsy, they can easily miss pockets of sperm wthat may be in some areas and may have just hit the pockets without them

Where in the UK are you?

Thinking of you both xx

 

[Deb111]

Thanks Debs for sharing you experience - sounds like quite an ordeal for your OH! I hope that's not how it goes for us as DH & I have our own business and time off can be very difficult.. Sometimes it would be lovely to be back in employment where you can be sick and it's someone else's problem!

He coped Bookworm - it wasn't too bad after the first 24 hours and nothing ever stops him sleeping which was good. I just wanted to point out that being back to 'normal physical fitness' can take longer than they tell you - in SOME cases xx

 

[Deb111]

Hi Bookworm, one of the nurses suggested to DH that rather than wearing a supportive strap, he'd be better off in regular jocks then an icepack and another pair of jocks for extra support. He's been relatively comfortable (at least not whinging as much as I expected he would be) .

Hubby went into some regular jocks too as soon as he got home and it helped a lot

 

[hippiehappy]

Possibily the worst day ever of my life. I know that sounds dramatic but it is how it feels. No sperm or spermatozoa found with TESA and the scientist in the procedure told the specialist that the cells looked DH has sertoli cell only syndrome. We've been told the only option is to go for donor sperm. Then no less than 5 seconds after I got the phone call from our specialist whilst I was in the waiting room, my BF sent me a text saying that she was pregnant for the second time (and now I'm sounding nasty but she didn't even want a baby until she was at least 7 months pregnant with the first). Then I got a call from the recovery nurse to come and see DH and when I got there was told that they "thought the news would be better coming from me" so I had to tell DH what I'd been told. Then we got told we had to wait two weeks for another appointment with the specialist.

I've cried all day but am now wondering whether that advice is a bit premature as I've just read that even in sertoli cell only syndrome, sperm/spermatozoa has been found in mTESE. I feel like I'm always asking for advice but do any of you have any suggestions about what I should do? I feel like my whole world has been turned upside down and the hits just keep on coming. I'm not prepared to give up but I don't have the emotional strength to be supporting DH and researching this myself today. My GP is arranging some counselling for us so I'm sure that'll help and, at the end of the day, I do know it'll all work out in the end.

Hi KB38 honey, so sad to hear about your news. Getting that text message must have just finished you off as well, you have all my sympathy. We have been TTC for about 3/4 years and are dealing with azoo too. My sister is also expecting her 2nd, she keeps rubbing my face into it and I'm starting to really hate her. It's even worse if your friend doesn't even appreciate what she has, but then, her babies will never be as loved as yours will be, when they eventually come. And have faith, it WILL happen .
Sadly I can't give you any advice but to keep trying specialists and to get a second, third and even fourth opinion if necessary.
Counselling is also a great idea, I have been seeing a counsellor for almost a year now and though sometimes the sessions are draining, it has brought me and hubby closer than ever.
Keep your chin up, lots of love

 

[WANBMUM]

Hi Guys WHERE IS EVERYBODY?
Hope you all are good.
I TOLD MY MOTHER!!!!!!!!!!!!! Arrghhhhhh!!! I must say it was tough as I thought and thought about the actual convo but when it came to it I just cried and couldnt get the words out - I am such a tit! But she was so good and helped me along. What I was shocked at was, she was so positive, to stay positive until you have the answers for sure, which I know we are always going to think of what may be ahead, but normally in any situation I am always the positive, glass half full sorta girl and I must say, on this 'journey' I have really lost sight of that because after each test it has been more bad news but I know for my OH's sake he really needs someone positive to help him through this. I know i wont always be able to do that when I am low etc. But you know what I mean.
I did say to her too, that we are prepared to do what we have to do to have a child biologically and that there are lots of alterntives, so if it is donor sperm, it might be less of a shock. We;ll see, as she said, we will wait and see what happens.
U/S is this friday - arrgghhhhhhh - my poor OH for some reason he thought it was thurs + when I said it was friday, the relief on his face that he had one more day was so funny.
Hope you are all doing ok