Dealing with azoospermia?

[Deb111]

What amazing news!!!!!!! SO thrilled for you both! I'm no expert, but even if they still want to do ICSI - which they may well want to; let's hope they don't need to do the TESE now. And who knows?? No harm in trying naturally - it only takes one and 4.2 million is a lot more than 1 !!!!

Remind me what meds hubby has been on? It was a hormone issue right? xx

 

[twilliamssbt]

hi yep we are seeing an endocronologist Dr Wu at Manchester RI in fact...

We have had the most amazing letter today

' i am pleased to report that your analysis on 8th June showed a return of spermatogenesis with a sperm concentration of 4.2x10^6/ml. although this is still relatively low this is an encouraging sign'

soooo... woohoo for us. i dont know much about the levels so dont know what 4.2 means i am assuming 4.2 million!! even if his sperm count is now just low atleast there is some there for TESE/IVF etc!!!!

thats all the letter says no reason for why it might of gone up etc, so i suppose we will find out more when we go in september!!!

i am just in absolute shock! i have been crying like a baby and jumping up and down its just so unexpected!!!

Hope you are all having a good weekend!!

Yep 4.2x10^6 is 4.2 million, writing x10^6 means 10 with 6 zeros, easier than messing up the numbers and having to count the amount of zeros you enter onto a report.

Good news about the endocrinologist, he may well be able to explain what is going on, and why sperm levels increased.

Good Luck trying x

 

[waitingginger]

well he hasnt been takin anything thats what so strange!! the only thing that has been diffirent is that the endo told him to stop taking all the vitamins i had got him taking because these could interupt his hormones.

when he has had his tests before he has never had the blood and semen at the same time, the endo asked him to do that so he could work it out, i think because the results of the SA and the bloods never quite matched up.

i am in shock thats it managed to go up with nothing! i dont know whether they are dead or not or swimming around, in all his other SAs it has always said eveidence of dead sperm but too few to count!
i dont know if 4.2million is enough to get pregnant with naturally! who knows!!
so unbelievablly excited as your right deb there shouldnt be an issue with ICSI if thats the route we have to go down!!

 

[WANBMUM]

Wow waitinginger! What amazing news, so happy for you. Bet your hubby is thrilled!!! Congrats! I've heard of people getting preggo on alot less than that!
That is crazy to think the vitamins were more than likely doing more harm than good. Who would have thought! (mine gave up taking his ages ago)
Keep us posted on what's next

 

[wibble wobble]

Hiya is it ok for me to join your thread (i'm new to this forum,but I'm on a few others)

I'm 29 and hubby is 32 (well almost,he got really defensive a couple weeks ago when I mentioned 32 bless I think he's worried about getting old! lol) We got the intial diagnosis of azoospermia from our gp in March and got referred to Liverpool Womens gynae outpatients for more tests. Hubby had another sa,bloods for hormones,gene defects and an ultrasound and then we got the official diagnosis of Non Obstructive Azoospermia. He has a raised fsh level which Dr Lewis Jones says is an indication of maybe mumps having caused it. All other hormones were fine so no probs with the pituitary gland and no gene defects,ultrasound was also normal. So the next step for us is for hubby to have a tese,so we're now waiting for an appointment to arrive. The Dr couldn't tell us how long we'd be waiting as they were in the middle of changing management and the procedure is being moved from broadgreen hospital to the womens so they need time to implement this too. So far we've been waiting 5 weeks and it seems like a life time,I really wish I knew how long we'd be waiting so I had something to focus on. I've had my bloods done on day 21 and 3 and all results are normal,think I have to wait until we are referred for tx until they do an ultrasound to check me out

 

[Deb111]

Hi Wibble Wobble and welcome

I think we all know how hard the waiting is - it just makes you feel like you spend half of your life in limbo!

Please make sure when you discuss the TESE with your specialist, that you ask them if they will freeze ANYTHING decent they find. We were told they'd freeze what they found until they only found 3 and then they destroyed them because they said it didn't meet their minimum criteria of 100!

All the best and keep us posted xx

 

[KB38]

Hi everyone, thank you all for your kind words and thoughts. I'm sorry I haven't replied until now - I've been hiding myself away, trying to process everything.

DH's bloods came back late last week. They are:

FSH 17 U/L
LH 6 U/L
Prolactin 327 mIU/L
Testosterone 8.7 nmol/L

We are still waiting for the chromosome analysis etc.

From what I can tell the concerning ones are FSH and Testosterone. We have been told that it points to a 'primary deficiency of the testicle'.

We are booked in for a TESE on Friday morning at 8am but doesn't sound too promising to be honest.

I've been doing lots of research and am coming up with nothing but am sure that I read, on this thread, the names of a UK and/or US doctor who specialised in the management of this sort of thing and who were happy to look at results and offer other suggestions. If so, could you please let me know.

In the meantime, if any of you have any other suggestions about which way to go, I'd really appreciate it. Its so hard to keep looking for solutions when you're basically being told there is nothing more that can be done.

 

[silverbell]

KB, don't give up hope. I got in touch with Dr Schlegel in New York by email and he replied and attached 2 interesting articles about azoo and basically it seems to me that blood results really don't give you an answer either way as to whether they'll find anything inside on TESE. Ie. there can be a guy with normal results and no sperm or there may be a guy with abnormal results and sperm found. I really do hope that Friday proves to be a day of celebration for you both.

Mr Jonathan Ramsay in London is the UK specialist in this area. He has been away on leave and has not responded to my email as yet, but once he does I shall be booking to go and see him with my DH. We just want to talk to somebody who specialises in this and knows what the heck they're talking about.

Don't give up hope and PM me with your email address if you'd like me to forward you the 2 articles. They're very medical and intense, but make some sense and are quite encouraging at a time when you need a bit of hope, no matter how small.

 

[hippiehappy]

hi yep we are seeing an endocronologist Dr Wu at Manchester RI in fact...

We have had the most amazing letter today

' i am pleased to report that your analysis on 8th June showed a return of spermatogenesis with a sperm concentration of 4.2x10^6/ml. although this is still relatively low this is an encouraging sign'

soooo... woohoo for us. i dont know much about the levels so dont know what 4.2 means i am assuming 4.2 million!! even if his sperm count is now just low atleast there is some there for TESE/IVF etc!!!!

thats all the letter says no reason for why it might of gone up etc, so i suppose we will find out more when we go in september!!!

i am just in absolute shock! i have been crying like a baby and jumping up and down its just so unexpected!!!

Hope you are all having a good weekend!!

Hey waitingginger that is SUCH good news I'm over the moon for you guys!
I see that you are in Manchester, we are too. Not sure if you have read my post, but we too have been dealing with azoospermia. Have you seen anyone at St Mary's Department of Reproductive Medicine yet?
If your OH has sperm at all the TESE might not be necessary as I hope for your sake it will not be. We have had that done recently and sadly the wait for that on the NHS is over 12 months, which is why we went private. Also as I understand it, in cases of azoospermia where sperm is recovered via TESE or there is a low count you will probably be referred for ICSI to the IVF clinic again at St Mary's. I know a little bit about this as I am waiting for results to start DR'ing.
If you want some advice, whether it's on TESE or IVF/ICSI in Manc, feel free to contact me. We've had lots of dealings with Dr Sajjad who is probably who you would be referred to. Also, though I might be no expert on IVF/ICSI (as a first timer) I am finding out more as I go along so again, feel free to get in touch and I will do my best to answer.
Good luck and lots of hugs xx

 

[hippiehappy]

Hiya is it ok for me to join your thread (i'm new to this forum,but I'm on a few others)

..........

So the next step for us is for hubby to have a tese,so we're now waiting for an appointment to arrive. The Dr couldn't tell us how long we'd be waiting as they were in the middle of changing management and the procedure is being moved from broadgreen hospital to the womens so they need time to implement this too. So far we've been waiting 5 weeks and it seems like a life time,I really wish I knew how long we'd be waiting so I had something to focus on. I've had my bloods done on day 21 and 3 and all results are normal,think I have to wait until we are referred for tx until they do an ultrasound to check me out

Hi wibble wobble and welcome. You must be quite near me geographically, I'm in Manchester and we had TESE in Liverpool at Spire. Sadly, this had to be done privately as the wait in Manchester was over 12 months. I don't want to give you bad news as it all depends on the PCT so the wait in Manc might by all means be much much longer than L'pool. However in Manchester the consultant (1 male fertility specialist for the whole Greater Mcr area btw ) now has to apply to the PCT for funding for TESE, which means you are completely at their mercy. I'm guessing that as time goes on, this will make the waiting list longer and longer. As soon as you are accepted in Manc and funding is approved, the W/L is about 12 months. I should say WAS actually as this is what we were told in December 2010 so probably even longer now?
Anyway like I said we went private in L'pool, reason being that the consultant we were seeing in Manc has a private clinic at L'pool Spire. We booked in to see her privately in March, got an appointment 10 days later and had the TESE op done 6 weeks after that. It might have been even quicker if we weren't going away on honeymoon in April .
I'm not an ambassador for private above NHS, but like I have said in other threads, do it if it will save you from having a breakdown. I waited, waited, almost had a breakdown, then went private. Best decision I ever made. I know perfectly well how the sitting around waiting is by miles the worst part. I just wish I had gone private when, after waiting 6 months to see a consultant, we were told that the follow up appointment to get the results would also be 6 months later!
Anyhow...
Please feel free to DM me if you want any advice on costs, time scales etc.

 

[Deb111]

DH's bloods came back late last week. They are:

FSH 17 U/L
LH 6 U/L
Prolactin 327 mIU/L
Testosterone 8.7 nmol/L

The FSH and Testosterone are virtually the same as my hubby's and they found 3 perfectly healthy sperm when they did the TESE - the NHS / clinic wouldn't freeze them as they said their minimum was 100! Worth checking out before the procedure.

Even if they don't find any on Friday - don't despair - my hubby is currently on tamoxifen to raise his testosterone naturally and is a different man! I just hope it's having the same effect on his sperm.

As well as Dr Schlegl and Dr Ramsay, you could have a phone consultation with Dr Turek in the US - you get 10 mins and all it costs is the phonecall

Wishing you both bucketloads of luck for Friday xx

 

[waitingginger]

Hippie Happ- we are in Manchester yes, we got referred to St Marys and did see Dr Sajad then she reffered us to an Endocronologist at MRI Dr Wu because OHs hormones were all over the shop.

You know i have been thinking nobody has ever sat there and said you have Azoospermia to us never had an offical diagnosis and the 2 SAs tht had 0 readins were done in April/May 2010 2 weeks apart so would of been from the same sperm sample. we then didnt have another SA until we went to see Dr Wu in April this year! so the samples are like a year apart!

is it possible the 0s were just reflective of one time period and not really a good indicator of how he is all the time! and Dr Wu knew this from looking at his blood tests! which is why he made us wait and get tested over 6 months before giving any treatment?

suposse i will get the answers soon! back to St Marys we go i think Dr Wu will of done everything he can now

 

[silverbell]

Just an update to say ...

Today I have:

1. Got an appointment sorted privately with Mr Ramsay a week on Saturday

2. Had counselling as I've not been coping well (and found it incredibly beneficial)

3. Seen the NHS Urologist with DH who said a biopsy (not a retrieval, but just a biopsy to see what's going on) was the next step and agreed seeing a Specialist was a good idea. He fully supported our decision to see Mr Ramsay and is sending him a letter and all our results off to him.

He did say that the biopsy (not a retrieval) could be done within a couple of months as a day case, but we feel we want any procedures done by Mr Ramsay as he specialises in this and we would feel safer with him. Urologist was fine with this and said it was sensible to keep everything together instead of bits and bobs done with various different people at various hospitals etc.

Hoping to update further a week on Saturday after we've seen Mr Ramsay.

 

[Bookworm]

Hi KB, Twilliams & wibble wobble - and everyone else!

Been ages since I've been on; coping alright and didn't want to tempt another crash! But I do feel pretty ok at the moment (which I'm hoping isn't just denial....)

Anyway - I thought the comments about looking at some of the positives of azo. were interesting; even before we had a diagnosis of a problem we'd been TTC for so long that I had already had that 'I'll never take my children for granted' feeling. But since our diagnosis I've binned the OPKs and stopped looking at CM and over analysing every twinge of my body. On nights out I don't worry should I drink or not.

Obviously we now have one BIG scary stress factor, but it's a stress with a name and a process to follow and a possible solution where as with TTC it's everything you eat/drink/excerise/when you DTD... having the diagnosis is strangely liberating and terrifying at the same time...
Of course I'm still taking my vitamins and alcohol and coffee intake is limited - and generally I eat pretty well and I walk the dog everyday and do yoga a couple of days a week, but most of that I would be doing anyway so it's not a concerted effort.

Quickly on where we are right now:
We're on the dual NHS/private track so there's some overlapping (and just plain lapping as we're so much further ahead with private!!)
Got (NHS) hormone results back (normal)
Been to another consultation (private) armed with hormone results - they've taken more blood from DH to do screening (HIV etc) which they do before doing TESE (eek!)
Got referral letter from (NHS) re: chromosome testing (that's separate from fs, at a different hospital and down to me pestering GP) - thanks SilverBell for the advice there!!
Got call for 2nd (NHS) SA in August(!!!!!) - no results of 1st SA, just call for 2nd.

So moving forward:
Calling NHS to see if they'll accept the SA results from private clinic and so cancel 2nd NHS SA and move to next step with them (not likely though - wording of letter is extremely officious and says if we don't go we get removed from their care and back to GP)
Calling NHS to set up appointment for genetic stuff and FX we can move that forward really quickly!
Waiting for bloods back from private clinic (expected to be available Thursday) and once they're in we can make an app for TESE/biopsy (expected to happen in next 2 weeks)

So basically we'll know by the end of July if there is anything in there! If there is, I'm hoping that the NHS genetic testing will move along quite quickly as that could save us quite a bit. If it doesn't we'll just get that done private too and move on to ICSI (FX FX FX FX). I think the private clinic would do ICSI and leave the further testing as recommended but to our discretion; but with the possibility of CF gene causing the problem I think we'd be irresponsible not to do it.

I'm still amazed that (if NHS say they won't accept the SA results we already have) we could already have a full private ICSI cycle over us before we even get our NHS azo. diagnosis! With an NHS SA in Aug and a potential 5mth wait for a review app (where you get the results) we'll be more than 1year in the system before they tell us we can't have children naturally.... I dread to think what the waiting list for actual treatment is like!!!

But then my next thought is "don't get ahead of yourself! Treatment might not be on the cards" (did I already say FX?!?!?!?!)

 

[WANBMUM]

FX FX FX FX FX FX FX is right. It is shocking that the whole process just to get diagnosed takes so long.

What is TESE? I guess i shall go google anyway.

A week on friday we have my OH u/s, FINALLLY - it has been the longest 8 weeks and its still ages away.

Ive been feeling quite crappy the last few days, i have had alot of constant reminders we dont have kids and alot of constant reminders other people can have kids willy nilly. Im sure it will pass..................or will it ever

 

[silverbell]

Hey Bookworm

How are you managing to do NHS and private? I didn't know you could do that? So does this mean he'll have TESE privately and you have IVF on NHS? If so, do you know if they'll use privately retrieved sperm for NHS IVF?

I'm so glad you managed to get a referral re the chromosome testing Great news and glad it worked.

You're right about the waiting for the NHS being so long and never-ending. It's absolutely depressing. At least those with non-severe infertility can keep trying in the meantime, but us ladies know there's no use doing that and so you're just stuck in limbo. It's horrible.

Wow, the biopsy is just around the corner for you guys now. I'm keeping everything crossed.

 

[silverbell]

Ive been feeling quite crappy the last few days, i have had alot of constant reminders we dont have kids and alot of constant reminders other people can have kids willy nilly. Im sure it will pass..................or will it ever

I've been feeling the same, Wanbmum. I just went for counselling today, in fact, as it all has gotten too much especially with some other bad news I've had on top of that (my Nan is dying).

I wonder if it'll ever pass for me too. I just have to believe that one day we will have our little family somehow and that is what is keeping me going.

 

[Bookworm]

Well the different nurses & drs/consultants seem to use slightly different terminology but the process they are referring to is the same thing: DH will go in and be put under a general anaesthetic, then they'll do the least invasive procedure which involves 'piercing' the outer layer og the testis (the epydidimus) and extract sperm - that's the TESE but some say PESE? I think there's a slight difference in procedure? If that bit is unsuccessful they move straight to biopsy there & then. I'll be in the waiting room...

With our dual approach I think it is quite common. We started with NHS before Christmas & just getting to referal & scheduling SA with fs took us to June so we just thought that was ridiculous. So without cancelling anything with NHS we approached a local private clinic & started the process with them. I asked at NHS if that would be a problem and they said no, and according to the person I spoke to even if we successfully conceive & deliver privately it won't effect our entitlement to NHS treatment further down the line..

 

[KB38]

Wow Silverbell and Bookworm, you girls are on fire!!! I think I'm going to start planning the way you both are. I think doing something is better than sitting around doing nothing.

I am getting nervous about Friday although I feel like a bit of a dill because DH is having a TESA not a TESE. The research is a bit equivocal about which one has a better chance of finding sperm but it seems that our specialist likes to do the least invasive procedures first. I guess I'm just going to run with that. I've also asked our specialist whether he can order an estrogen test. I haven't heard back yet though. Did your OH have estrogen done Deb111?

Call me crazy but I've also been exploring alternative therapies like acupuncture and homeopathy. I've emailed a few people and am just waiting for their replies. DH doesn't sound too keen but who knows....

Oh and I've thought of a positive to add to your list Bookworm - if I can move past this point, bigger picture = no more birth control

 

[silverbell]

I don't think it's crazy to investigate any alternative measures, but do just be cautious before trying anything in case it will interfere with any of the more medical stuff/procedures etc. I'm sure you know this anyway.

That's the only good thing about all of this, KB - no more birth control! Which is good, as I wasn't going to go back on the pill again after this anyway. I hadn't ever had problems on the pill, but just didn't like the idea of giving myself artificial hormones. Of course, this does mean more of the dreaded 'wet patch' ... I told DH that's one thing I am not looking forward to. I hate the wetness after! (sorry if TMI) DH is rather chuffed he probably won't have to use condoms again as well.