Dealing with azoospermia?

[Bookworm]

Hi Silverbell, we're only at the investigation stage but I definitely echo happyhippie - the waiting is hell and if you have the option go private.

In this situation - where natural conception has been completely ruled out (not unlikely/difficult but impossible) the NHS wait is torture! We still don't even have an official diagnosis of azo via NHS! And we probably won't have it for another 3-6 months! And that'll just be to schedule another round of hormone/gene tests so it could be end of next year before we would know on the NHS if we can have children of our own - privately we have been told that we'll know by the end of July! And all things being well they are confident that we'll have an ICSI cycle before the end of the year.

At the moment I'm counting us very lucky to have the flexibility to do this privately while working through the NHS too. I feel for anyone who finds themselves in this limbo with no option but to plod through NHS waiting lists. I think I would definitely find myself in happyhippie's position with a breakdown (I was almost there as it is!).

*BTW just an update on where we are- DH hormone results all back normal but GP received a call from the labs to say they wouldn't do the Karyotype/Ychrom/CF as request came from private clinic (this is after GP phoned them and they said they would:growled. So with hormone's down we're a step closer to our suspicion the CF is the cause... but private fs will probably recommend the tests done through them before the PESE (which is more money but as above, well worth it)

 

[silverbell]

I agree the waiting is terrible and we've only just started. It's horrendous and you're stuck in complete limbo knowing you can't get pregnant and just waiting and waiting and not even being able to do anything to improve the situation.

We had another chat last night and we both feel we just want to speak to somebody who knows what they're talking about and get things moving.

We are still in a bit of debt (DH's side), but we'll most likely be taking out a loan to pay for private treatment. Otherwise I genuinely believe we'll both end up depressed and struggling just to get through each day. Funnily enough I even said last night that I could easily see how you could have a nervous breakdown over this diagnosis.

Bookworm, not sure if you've already done this, but it may be worth speaking with one of the Pathologists at your local hospital and asking them if they do the Karyotype, Y-chromosome and CF carrier blood tests there and, if not, where they can test for these and, if so, how you go about requesting them. I found out that my local hospital didn't do it, but the Pathologist suggested I try Southampton. I contacted Southampton to be told it was the Wessex Genetics Service. Contacted them and they said that this was no problem and they just needed a brief note from the referrer to say what they were testing for and why and we could have the blood taken at our local hospital and posted first class to them to test over there! We've yet to ask anybody to do this, but I hope this helps. It may well be worth checking this out before having to get it done privately. Anything to save more money.

 

[luckdragon]

hi girls how you all doing? sorry i've not been on for a while, i decided to give thinking bout it all a bit of break lol but had mine and dh's first urology appointment through today for the 27th of july so i thought i'd let you know mwah xxxx

 

[waitingginger]

Hi all!
Hippiehappy i am also in Manchester! was it Dr Sajad you saw at St Marys? we saw her but got referred to an endocronologist Dr Wu due to my OHs irregular blood work.
The wait to see Dr Sajad is ridiculous i am glad we got reffered to someone else!

We are going to wait out the NHS way for now because i am 26 so we figured even if it takes a couple of years we still have plenty of time to go privately afterwards. (my next 2 bonus payments needs to go on our wedding)

Hope you all have a great weekend! i am on coundown until we go on holiday 5 weeks tomorrow!! then see our endocronologist about 5 weeks after we are back!
xxxx

 

[hippiehappy]

Hey, yes it is Dr Sajjad. She did the operation at her private clinic in Liverpool, which was worth it. His hormones were ok it was a purely mechanical issue but you're right about the wait to see her being silly!
Good luck with the trying x

 

[KB38]

Hi everyone, mind if I join you.? DH is 34. I am 32. We have been TTC since September last year whne we married. DH was diagnosed with azoospermia about two weeks ago and, just like that, my world turned upside down .

We had a urology appointment yesterday where the urologist commented that DH's testicles were 'a little on the small side' and referred us for blood work which DH had done this morning. We should have the results on Tuesday and, all things going well, be referred to an FS later in the week.

The urologist wasn't prepared to do any other tests because he said they were best done by a FS which makes me angry. Why in the world did we have to go there at all. The whole small testicle comment has made DH question his manhood and his self-esteem is totally shot.

TBH with all the stress that this is putting us through there is a part of me that wonders whether this is really all worth it or if I should just cut my losses and move on with my life. This is v weird for me as I have been desparate for a baby for so long (just put it off with study and work).

 

[silverbell]

Hiya KB I'm so glad you found this wonderful thread and I'm just so sorry you're another couple going through this terrible diagnosis. My DH was diagnosed 1 month ago yesterday.

Don't worry about the feelings with regards to just giving up. You'll still be in shock and it takes quite some time to start getting your head around things. In fact, I'm still trying. My mind still feels very much all over the place and I think all sorts of things. Don't over-analyse anything either of you are feeling at the moment - it's all normal and natural.

My DH was also told his testicles were smaller than normal and the look on poor DH's face will stay with me forever. He looked like he was going to be sick and I think it was a mixture of worry and a knock to his confidence. DH was referred for a scan and for bloods (the scan because the GP could feel 2 lumps on one side of DH's testicles, which DH had known about anyway and it turned out it was a cyst).

The bloods showed he had very low testosterone and a high FSH (which proves testicular failure), so he was referred to an Endocrinologist as he needs some kind of hormone therapy to improve his health (not related to fertility).

As for the Urologist, we've not seen ours yet but due to see him in 1.5 weeks and I've already came to the same conclusion in that they won't be able to do much at all and he'll probably just send us away to see a FS. I think a lot of this comes about because GPs panic and honestly don't know where to send people with this diagnosis, as they very rarely come across it. I wish they were better informed because when you're given such a shock the last thing you need is the medical professionals floundering and not really knowing anything. In fact, our GP isn't even aware of sperm retrieval and how it can sometimes be successful for azoospermic men. He simply told us that we were left with donor sperm or adoption. I thank heavens for the internet and the knowledge it can provide.

We're going to see a specialist privately very soon hopefully, as the waiting is not doing much for our mental health right now.

Keep talking to your DH and be as open as possible between each other. You need to be strong and supportive for each other and you'll both be going through your own personal grief and sadness. He is absolutely not 'less of a man' due to the azoospermia or small testicles. If anything, he's more of a man because it takes a really strong man to get past this and move on and find peace with it. I have so much more respect and admiration for my DH since the diagnosis than I thought was possible and, despite everything, our relationship has gotten much stronger over the past month.

Thinking of you and please stick around on here. Everybody here is going through the same thing and that makes it a very safe and understanding place.

 

[hippiehappy]

Hi KB38 & thanks for posting. I think what you're going through is like silverbell says completely normal. When I went through my rough patch at the end of last year that is exactly how I felt. I thoughtthis isn't worth it and just started going out and getting off my head. Apparently it's a way your brain reacts to protect you from grief. It's taken months of counselling to get me right again.
The good news is that one of the first things we were told is that male problems are generally easier to solve than female ones.
I know this doesn't sound like much at the moment but like silverbell says, keep talking to each other. Doctors and fertiliy specialists usually go for the worst case scenario approach: we were told about considering donors and adoption as soon as the azoospermia was diagnosed, without him even having done the hormone blood tests!

My advice as well would be to try and see a fertility specialised counsellor. Ours has done us the world of good as a couple, I couldn't recommend it enough.
I know just the thought that you now need to consider this is depressing, I broke down when they told us the solution would be ICSI. it's like the reality of the situation bashes you in the face, but help is out there, even though sometimes it's no that easy to find.

Good luck and keep your chin up xx

 

[Deb111]

Hi KB38 and welcome

Silverbell and Hippy have pretty much said it all perfectly. Be kind to yourselves and give yourselves time to grieve. I don't know where we get it from, but like all the other couples on here, you WILL get the strength to move forward with this and pursue your dream xx

 

[WANBMUM]

Hi kb and all you other lovelies
So sorry your here with us kb, it really sucks but being here with this support really helps and from people who understand completely what you are going through.

Girls, I know this may sound weird or you will think I'm a freak but very occasionally (maybe I try to think like this to make me feel better) I feel in a way, we are almost lucky, maybe lucky isn't the word but I feel proud that we are getting through this nightmare together, in a crappy way me and oh have become closer, its like us againstthe world. we have been reminded how precious life is, I almost sorry for people who can have babies willy nilly as they will always take them for granted and never truly know how lucky they are, whereas when we finally have our precious baby, every second we will be grateful.
Ok sorry, got carried away there, I hope some of u understand, I still wouldn't wish this situation on anyone and it breaks my heart every day but at least I have my husband

 

[silverbell]

I don't think it sounds weird and I don't think you're a freak and while I don't think we're lucky by any means I do understand what you're getting at there. My relationship with DH is a lot stronger already after just 1 month and I'd already thought it was solid before all this. I also think that we will definitely treat pregnancy and a child a bit differently to other people who have no fertility issues. It's only natural that those with infertility would feel much more blessed, having gone through so much to get that end result.

However, having said all that ... I still wish we could just have sex and get pregnant like so many other couples

 

[WANBMUM]

Ya I wonder what it's like to have sex and get pregnant? I almost dont put the 2 together anymore.
Only 20 days until the U/S, it is going quick I guess and even though it kills me to wait, in a way it's given us time to process what may be ahead, at the moment we are feeling alot different than 5 weeks ago. Maybe that's because it's not as fresh or even real, the time around tests is the worst ok I'm waffling again

 

[twilliamssbt]

Ok here goes, my partner had a pituitary gland tumour in 2001, excess growth hormone and raised prolactin, low testosterone, low cortisol, low LH low FSH.

He has Acromegaly, his cousin has a prolactinoma, it seems his family carry a gene mutation on the AIP gene which codes for a tumour supressor gene.

On diagnosis he was 23, I was also 23.

In 2006 he had SA which was total azoospermia, I worked in the lab that tested the sample and I saw the slides myself, (only after the doctor had given the result officially etc etc).

In May this year after not using protection for 5 years, due to the previous azoospermia result, we approached the Endocrinology Professor that overseas his treatment about fertility treatment.

He informed us that HCG injections 3 times a week would within 6 months raise his count from 0 to enough for natural conception.

Our GP sent the funding referral to our PCT in May, and because he has issues with erections at times due to the hormone imbalance was also referred to a Urologist. The urologist is sorting the erections, and there is considerable improvement, but he also asked for 2 semen samples for analysis before the fertility treatment could begin.

Here was the big shocker, since the azoospermia result, he now has a low count with some progressive motility problems (I have berated him for not getting figures when he phoned the GP for the results). Even our GP was shocked at the increase in sperm.

He has been taking all the hormone replacements he needs day to day, 4 years ago he was also swapped from Sandastatin LAR growth hormone supressor to Somavert, which finally has got his IGF-1 level back in the normal range (IGF-1 is the representative test for measuring Growh Hormone levels, random levels change depending on time of day), he has been on Cabergoline daily since 2001 to decrease his prolactin and allow his testosterone to increase. His testosterone has been one of the complicated ones to get stable, and often goes up and down in bad swings.

We are now trying actively on our own charting while waiting for all the doctors to get their acts together to decide on the next step and acquire funding.

We were kind of gutted a few weeks back when we found out his tumour is hereditary and that our children will be DNA tested for the mutation before they are 4 years old as this is the gene responsible for pituitary gigantism. We have been assured that we will be entered into the study at Barts and London hospital and our children will be monitored closely for any signs of increased growth hormone, Prolactin and dips in other hormones along with MRI scans yearly for those who carry the gene mutation.

I am so lucky I have a medical background even though retired after an accident, it was me that put two and two together when we found out about his cousin and contacted the professor in London who discovered the gene mutation. She thinks my partners tumour began in adolescence which technically makes him giant in comparison to his parents even though he is only 6'4 and usually giants are approaching 7 foot if not more.

There can be light at the end of the tunnel, but undiagnosed endocrine problems really can play havoc on fertility for both men and women.

 

[Deb111]

Hi twilliam and welcome to the thread

It's really interesting to hear how everyone's azoospermia stories are so different and with so much info to delve into, it really sounds like your medical background is a godsend. I really hope you get some positive news soon. Keep us posted xx

 

[silverbell]

Hi everybody

Hubby has found out today that he has to have an operation on his nasal passage to remove and straighten some cartilidge (is causing him problems with sleeping and breathing).

This has to be under general anaesthetic and apparently will be done within 5 weeks, as it's just a day case op.

Does anybody happen to know whether general anaesthetics effect the treatment of azoospermia in so much as a biopsy in the future or medication etc? I'm pretty sure it would be fine, but DH is concerned that this might further delay any treatment, as we're hoping to go privately for everything. I have emailed Mr Ramsay to ask him, but as it's his first day back today after leave I realise this may take a while and wondered if any of you knew so we could get DH put on the list rather than waiting for a reply?

 

[Deb111]

Sorry SB I don't really know. My instinct would be that it wouldn't be a problem, but I understand the concern. Could you get him on the waiting list anyway ? - you can always cancel it xx

 

[silverbell]

No probs, Deb. Yeah that's what I've told him. I actually think from bits he's told me today that he's trying to delay it because he's worried about the effect it's going to have on my current state of mind, bless him.

I'll keep persuading him! Thank you x

 

[waitingginger]

Hi twilliam

Thanks for your post really interesting! my OH is so scared his azoospermia is caused by a brain tumour, his testosterone and FSH and LH are also low, nobody seems to be considering a tumour as a possibility, we havent had a scan but i think i am going to ask when we go back in Sept, even if its just to put his mind at rest!

I really hope you have luck naturally very soon!
xxxx

 

[twilliamssbt]

Hi twilliam

Thanks for your post really interesting! my OH is so scared his azoospermia is caused by a brain tumour, his testosterone and FSH and LH are also low, nobody seems to be considering a tumour as a possibility, we havent had a scan but i think i am going to ask when we go back in Sept, even if its just to put his mind at rest!

I really hope you have luck naturally very soon!
xxxx

I see you are in Manchester, has your OH been referred to an Endocrinologist yet, Professor Trainer at Christie is an amazing endocrinologist and is very versed with pituitary disorders as well as tumours. He is my other halfs Endo.

There does not necessarily need to be a tumour for his hormone levels to be out, a good Endo will do further blood tests and an MRI however.

Has he had cortisol, prolactin and Thyroxine checked yet. Am presuming Testosterone, LH and FSH were performed as you had problems with fertility. Possibly following an azoospermia result.

Thank you, fx for your OH too x

 

[waitingginger]

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!!