Dealing with azoospermia?

[esuzanne]

:wave:Hi everyone! Sorry I have been away, I feellike I need to spend days reading on here just to catch up! I have started writing a journal and wow it really shows how my emotions are all over the place haha. So, I am seeking advice from all of you and anything is welcome! Sorry its soo long!

My DH and I went to a urologist who specialized in male infertility and only sees patients for this reason. While a regular uro did his biopsy, we wanted a second opinion and to absorb as much information as we can. DH test for Klinefelters came back normal...and this new dr tested for any microdeletion of the Y chromosome and they too came back normal!! Sigh. He told us that he strongly believes it is something genetic that we just don't have a test for yet in 2012. He said our options are, of course donor, or he can do a MicroTese where he will check the top, middle, and bottom portions of the testicle and of course he doesnt want to freeze any that he finds since they dont do as well, meaning that we would have to do IVF. The chances he said for finding any with this is about 20% and then of course the % of the IVF working. The other option is to send us to New York at Cornell and do the procedure where they basically turn the testicle inside out and search for any...this too would go with IVF and would run about....are you ready? $30,000. The % that this would work are about 40-45%. DH and I have been looking at donors and we are actually ok with it and just ready to get it going....I just dont know what to do? Should we get another opinion? I mean $30,000 would send our child to college, ya know?! I am at a loss here.

 

[WANBMUM]

Esuzanne- wow that is alot to take in! To be honest I guess only you guys can make that decision. And in my opinion I guess your hubby has to decide, with your support, what he wants to do. Before our final diagnosis my hubby had said he would try anything, have any op possible to have his own children, he had also decided donor would be a definite next option. I would have stood by him no matter what, if he wanted to spend 30 thousand I would have stood by him if it was something he really wanted. I have no idea where we would get that money but I believed it was his body his decision (once he wasn't in any danger)
As it turned out there was nothing they could do and we have moved onto donor
What does your hubby think about the op?

 

[esuzanne]

Thank you so much for you opinion! He is totally fine with donor and I am too (we actually put a few vials on hold!) as long as I don't start thinking about the things that our child won't have, like his eyes, etx., you know all that stuff that you know makes you sad haha. At this point we just want a child to share our love with. He honestly doesn't want to do another surgery and as you mentioned....where in the world would we get that kind of money. I agree that it is his body and he is the one who should decide what he is comfortable with. I do not want us to make a selfish choice...I really hope that our future child understands whatever we end up doing. We are going to see yet another urologist on the 15th, just as one more opinion. After all of this we never "get our hopes up," bc we have bascially already accepted what we have been given, and that is lots of love to share with a child. You have to draw the line somewhere, and just move on.

Good luck with your next IUI! That is SO exciting!!!!!

 

[Deb111]

CBergs - How 'high' is 'high'? and do you have a note of his other hormone levels? Testosterone? LH?

 

[WANBMUM]

Thanks esuzanne. I understand completely, it all takes so much time to come to terms with and I believe it will never go away not having our hubby's babies, it will always be there, I'm sure in 30 years that feeling will still be there but when we have our beautiful baby/ies we won't want to change it or them for the world.
You both sound like you have a good idea of your decision already, you would need a high percentage of success with an op like that in my opinion and also ask about downsides, could it affect your hubby medically if it didn't work out. etc
You are right to get another opinion, get all the information you can, you can never have too much

 

[Deb111]

esuzanne - that's a tricky one. I know my dh wanted to exhaust every chance we had before giving up, but we weren't looking at those kind of costs and he was dead set against donor sperm too.

I guess if it was me, I might consider the mTESE and IVF and move onto donor sperm if that didn't work, but it's so hard when it all comes down to money.

I really hope you can come to a decision which you are both happy with - it sounds like you're both on the same page anyway so that's great

 

[Deb111]

Good point Wanbmum - make sure you ask about health issues in terms of testosterone production after both types of surgery. The more tissue they remove, the less the ability to produce natural testosterone and this will potentially affect your dh's health further down the line

 

[esuzanne]

Thanks again ladies! Yes, the dr did say that every time you go in, there is a chance for scar tissue and the T production could change. I mean is it worth MAYBE finally having a child that is 100% biological and then DH be on medications, etc just to stay healthy? So many things to decide. And its like one moment I know that donor is exactly what we should do, then the next I am questioning everything. Ahh drives me crazy haha! We are also on a tight schedule bc of DH being the in military. I do believe that you can always get another opinion, over and over again...there are always options out there if you are willing to spend the $ and perhaps a few risks...so hard to decide when to stop. Thank you all!!! I hope to hear more from others!

 

[MrsC8776]

Hi esuzanne

We were in a similar situation a while back. Do we pay all this money for IVF (nothing covered by insurance) and have make a child or do we go the donor route and put that money towards raising a child? Plus add in the odds of it working the first time. We went the donor route. I guess the way we thought about it was we could have one go at IVF or try many times with IUI/donor. There so much costs involved with the IVF and getting sperm it is insane. Honestly I think it is completely unfair. I think it is best to let the men decide what they want to do. If it was the other way around I would want the decision to be mine. Its a hard choice but from what I have learned is that once a decision is made we can't look back and think about the "what if's." In the end a child will be made and unconditional love will be given to that child no matter what.

I don't know if any of that made sense. I just wanted to share how we went about deciding to use donor rather than going the IVF route.

 

[Stinas]

cbergs - Honestly, I think a frozen cycle might be better. You just never know what they might/might not find during the TESE. Our urologist gave us a 99% chance of finding "tons of sperm" and he ended up finding a couple. All DH's levels were normal.
Honestly, I find myself saying the same thing...Its crazy and such a shame that this happens to people....usually to the good people too. Nothing ever happens to the people that should not have kids. Its a shame.

esuzanne - We are in the process of IVF with the sperm they found through the mTESE. By the time we are done, it will cost us over 30k. We are going to fight the mTESE price because it went from estimated 6k to 14kish, thats just another crazy story added to our lovely list.
I would sit down with a IVF place and see their prices and what they do exactly, then weigh out all your options. You should do whatever you feel is right for you both. Everyone is different so those percentages can change.
Ultimately, only you two can really make that decision. Its hard to figure out what to do. The cost of IVF is another stress to add onto the whole azoo thing...trust me...our insurance does not cover a thing, so that stress is something we are currently going through.
I wish it was all easier.

 

[cbergs]

Deb- He honestly didn't say, maybe because he didn't think it was relevant. According to most literature, if it's higher than 15 than it is a problem with sperm production. I'm sure it was higher than 15...I will call and ask tomorrow. Does the number give insight as to the percentage chance of finding anything?

Stinas- We are going to go with the frozen cycle. If they thaw out and don't work properly when it is time for IVF/ICSI then we will opt for another mTESE and do a fresh cycle toward the end of next winter. (for some reason the Uro only does 2 "fresh cycles" per year??) (by the way, I'm speaking as if he def has some, which I'm not sure, but hey...what is the harm in hoping, right?)

Esuzanne- welcome, but I'm sorry to see you here. You are in the same boat as my husband and I... This whole thing definitely blows, and most people don't understand. It's great to check in here day to day and feel reassured that we aren't alone, and that there is support out there that totally gets YOU!

I will keep everyone updated...until then, good night.

Love,
Carrie

 

[Stinas]

cbergs - As my mom says...you need to hope for the best but prepare for the worst. In all our cases thats all we can really do! I really hope they find sperm for you!!!

 

[Deb111]

cbergs - firstly, I forgot to mention yesterday, that although it feels like a fresh cycle is better, and in fact that is what we chose to do, our urologist said there really isn't a difference. The advantage of a frozen cycle (especially if you end up with a few thousand) is that only the strong sperm survive the thaw. He said it acts as a process of natural selection, wedding out the poor ones

In terms of the FSH - according to Terry's notes, 2 - 12 is normal, his was 17. Mr Ramsay was really pleased with this. He said in conjunction with an LH of 10 (normal being 2-9) and testosterone of 8 and previously 4.3 (normal 8.6 - 29) meant that his body had realised there was some kind of issue and had started to raise the FSH to try to deal with it. Apparently the fact that it wasn't TOO high meant that Mr Ramsay had the scope to push it higher and make his body try harder. He said he had on rare occasions seen sperm in men whose own bodies had pushed their FSH up into the 30's.

After the meds, Terry's levels went to -
FSH - 28 and 23.7 in 2 different tests
LH - stayed at 17
Test - 13.4 and 12.2 in 2 different tests

So basically if it's not too high, there is potentially more hope, but it may indicate medsmight help. Plus it's important to remember that FSH has to be looked at IN CONJUNCTION with other blood test results xx

 

[cbergs]

Stinas- I am keeping the option of donor sperm in the back of my mind, and will begin seeing a therapist today that specializes in IF. I'm hoping she will help me cope through this whole process. (Whether it's finding sperm, and hoping that everything will work out as planned, or going another route.)

Deb- He had his Testosterone, LH, and FSH checked as well as a Karyotyping and Microdeletion test. Everything came back 100% normal, except the FSH. This is def helping in giving us hope. I mean, if everything else is normal, there has to be a few of those buggers in there somewhere? I mean, doesn't testosterone also tell the testes to make sperm? And if he's good in that area, as well as LH...then, hopefully! All we can do is pray, pray, and pray some more.

Keeping everyone in my thoughts,
Carrie

 

[wibble wobble]

sorry to put a downer on your hope, all my hubby's tests came back normal except for the raised fsh (I never did find out what it was raised to) our specialist said there was no medication he could put hubby on as his brain had recognised that there was some kind of problem and was trying to fix it hence the fsh result.

We went for tese given a 40% chance of finding sperm and we were hopeful (probably too hopeful), given that only the one hormone was dodgy and nothing was found. I'm not saying lose hope completely as every case is different, just don't think that it's a dead cert you'll find sperm with it only being raised fsh that is your problem.

Speaking from experience if it does happen to be nothing found at biopsy and you've been thinking too optimistically the result can really hurt... I sometimes think if I hadn't got too excited before the tese, the weeks after the result wouldn't have been so bad

 

[Step Mummy]

Thank you so much for you opinion! He is totally fine with donor and I am too (we actually put a few vials on hold!) as long as I don't start thinking about the things that our child won't have, like his eyes, etx., you know all that stuff that you know makes you sad haha. At this point we just want a child to share our love with. He honestly doesn't want to do another surgery and as you mentioned....where in the world would we get that kind of money. I agree that it is his body and he is the one who should decide what he is comfortable with. I do not want us to make a selfish choice...I really hope that our future child understands whatever we end up doing. We are going to see yet another urologist on the 15th, just as one more opinion. After all of this we never "get our hopes up," bc we have bascially already accepted what we have been given, and that is lots of love to share with a child. You have to draw the line somewhere, and just move on.

Good luck with your next IUI! That is SO exciting!!!!!

If I can just add a little something without upsetting you - My DH had SSR op and caught an infection which lasted 6 months and he was very very ill with it, it nearly ended in him having his testicle removed which then would have been followed by reconstructive surgery a year later, however a very strong intravenous antibiotic saved it - days before the removal surgery we noticed a slight improvement. We were initially told we had a high percentage of success and on the day of surgery DH was told less than 10%, but as DH was already in the hospital in his gown, he decided he might as well go for it as he was already there. If we had known in advance this % we would not have proceeded and would have gone down the donor route, we only proceeded because of the high chance of success. The next 6 months were pure hell. I am NOT saying this to scare you, or to suggest that you might have any problems, but the opp for £30k sounds very serious, and may have risks associated with it. Just find out what those risks are clearly before running into it headlong just because you want a biological child - listen to the bits that you don't want to hear. My DH was so keen to give me everything I ever wanted and was almost too keen and too easy going into the op.

I am not saying it can't work of course there are loads of ladies on here who's DH's have had successful SSR's and who have had successful IVF/ICSI following. It's just there is a huge amount to consider and it is as possible that things can go wrong as well as right.

I hope I have not up-set you, I just wanted to urge caution into your decisions, never wanting anyone to experience anything like we did.

There are no right or wrong decisions, it's just you and hubbies choice to get where you need to be. My thoughts are with you while you are making this tough decision, and taking the time to get there.

I am so sad to hear people still going down those same steps we took a couple of years ago.

Good luck in figuring it out. x

 

[CanadianMaple]

Hi everyone. I too am just feeling too down and depressed to post these days. I'm on the pill pre- donor IUI and it is making me into a depressed crazy person. I took today's pill late and am this.close to calling the whole thing off. If I am angry/crying all the time on the pill, I don't think I could do clomid either. Suddenly I am questioning everything. I have made an appointment to see my family doctor for antidepressants, even if that means I have to wait a few months before doing the IUI. I think I just hit my rock bottom and really regret not pushing for antidepressants when we got our dx.

As for deciding between mTESE with small percentages (same stats we were given too, BTW), I had to leave it up to DH. We would have loved to have his bio child. Desperately. But, he's 44 in Sept and we just didn't feel like we had months and months to decide. Our clinic only does fresh ICSI, so we would have been taking a huge gamble and probably would have ended up with donor sperm at a huge cost. I knew emotionally, I wouldn't be able to to an egg retrieval an hour after discovering it wouldn't be DH's biobaby. It's a lot of money and I really didn't want the huge debt reminding us for the next few years of his azoo and failures.

I am still nervous as hell to go through with the donor. DH is starting to get nervous because I am. I'm not sure if it's because I am a crazy person these days with the BCP or if there is more. We're going to spend some time talking tonight and this weekend about it.

I am thinking about you all and will try to pop in more. I'm just so caught up in my own hell, I know I am not being the buddy I want to be.

 

[Deb111]

sorry to put a downer on your hope, all my hubby's tests came back normal except for the raised fsh (I never did find out what it was raised to) our specialist said there was no medication he could put hubby on as his brain had recognised that there was some kind of problem and was trying to fix it hence the fsh result.

We went for tese given a 40% chance of finding sperm and we were hopeful (probably too hopeful), given that only the one hormone was dodgy and nothing was found. I'm not saying lose hope completely as every case is different, just don't think that it's a dead cert you'll find sperm with it only being raised fsh that is your problem.

Speaking from experience if it does happen to be nothing found at biopsy and you've been thinking too optimistically the result can really hurt... I sometimes think if I hadn't got too excited before the tese, the weeks after the result wouldn't have been so bad

I was just popping back on to say something along the same lines. As I said before, I don't know that raised FSH in itself is much of an indicator on it's own. I think ours was treatable to an extent because of the combination of raised FSH and low testosterone. Of course, the fact that your dh's FSH is raised, means that his body has recognised the problem and is trying to rectify it - whether or not his body is being successful in doing so is the gamble you're looking at xx

 

[Deb111]

CM - I'm sorry you're going through such a tough time. I went back on my anti-depressants for a while before the IVF and it just gave me the boost I needed to get my head a bit straighter before the IVF.

Don't ever feel bad about not feeling strong enough to be supportive on here. If you need some time away for whatever reason, then so be it, but please don't stay away because you feel you're bringing people down. Everyone is here to support you, whatever stage you're at and whatever route you decide to take. There have been plenty of other times when others have felt very low and you have been there for them.

Be kind to yourself xx

 

[WANBMUM]

Well said Deb. Canadian, this is the time when you need this support. We have all been there at some stage or another in this process.
You sound like you are overwhelmed at the moment and you def need some time to relax and get your head and hormones back to normal. You poor thing your hormones are all over the place. just remember it is the pill, not you, when you are feeling crazy, remind yourself of that.
Even though most of this journey goes so slowly, at times I have felt it has all moved so fast and you barely have time to breath, that sometimes the waiting can be good to get your thoughts in place and just switch off at times.
Hope your ok, can you change the 'type' of pill your using? You poor thing = sending you hugs x