Azoospermia support, stories and timelines

[Ljp2022]

Hi All,
Hoping to get a chat going with some advice. My husband and I started TTC 9 months ago but had an inkling something was wrong. We had a private fertility assessment which showed he had no sperm in his semen (azoospermia). We are incredibly overwhelmed and shocked but are keen to explore further testing.

We have gone to our GP however he has explained the wait will likely be several months until we are seen in infertility clinic. We have therefore decided to go privately. My husband has had blood tests for genetic testing and hormones this week (not sure how long it will be until we get results?) and he has a urology appointment in a month’s time for a physical exam.

Id be so grateful if people can share their experiences of azoospermia, outcomes, success stories, other options explored, tests but also timelines if private? How long does it take for tests to come back? How long until he has his sperm retrieval test? What’s next and how long?

sorry for all the questions - so overwhelmed and no one seems to have any answers…thank you in advance.

@Sleeter0893 yes, June is when he predicts for us! It’s such a great celebration but then all of the next worries hit instantly- thaw test, egg retrieval etc. but I’m going to try just enjoy this positive news and not be an overthinker.

thaw test will be done today… everything crossed for that!

Ahhh amazing @IslaO !!!! So chuffed for you!!😃

I thought it would be good news as you said they have only been in one testicle and I thought if they had not found sperm they would have gone in the second one!

I know it's easy to get wrapped up in the worries of next steps but definitely just take this as a win! It's wonderful news!! 😘 xx

@lemons44 thats what I thought too but you just second guess every little thing. Like when it was taking ages for them to come and chat, every minute was a ‘oh they are searching the sample trying to find something, there’s nothing obvious in the sample’ and then when a random admin girl walked past and smiled I was like ‘oh that was a pity smile’. I was a paranoid wreck. I will take today as a win but it’s so hard to fully celebrate anything when each step of the process is nerve wracking! Thank you everyone for being there for me today ❤️

This is the only page where I feel like I’m seeing positive things everywhere I look there’s alot of negative about azoospermia so I’m pleased I’ve joined!

@IslaO congratulations!!! I’m very pleased for you! I can’t seem to find the background to your past circumstances but did you OH have no sperm? Was it obstructive or non? Sorry for all the questions, it’s a relief hearing that they found some sperm to start IvF as this could be us in a couple months time hopefully.

@lemons44 yes I need to make this clear I don’t know what is what with all these different things that I’ve never heard before it’s all so new to me. I’ve asked for copy of referral form so hopefully that will have all details on which I might need some help understanding ahaha. Deffo won’t do anything until we know the pros and cons to each part so thank you for making me aware of that. Are you all under Dr Ramsey? We are around 6-7 hours away from London where he’s based so I don’t think it would be possible just yet to have an odd appointment. We are being referred to a urologist at a different hospital which we were told he’s the best around near us. The current consultant said that he’s the best one and if there is sperm he will find it aha.

we are both ok just trying to take everything in. We are a little step forward with knowing the next step as to what’s going on. Where as before we were in the dark not knowing if it was an obstruction, or a bad test or whatever but at least we know now. Trying not to think about the long road we have to go down and it terrifies me incase my body doesn’t cope with ivf but I’m trying my hardest to overthink.

Everyone that’s had a micro-tese what was the waiting time to get that appointment. I think it’s the not knowing/waiting times of appointments that makes everything 100x worse.

thank you all so much for your replies they have really helped me.

@IslaO yes!!! This is such amazing news, one huge leap closer to what you want! Enjoy today and try not to worry about the future because today is a bloody great day in what has been a really traumatic experience so you deserve to celebrate!

@Lp96 I can't speak to Dr. Ramsey or wait times near you, but if you feel good with the urologist you meet, he could definitely be a good fit. Just make sure to do background research and if you need to grill him, do it! We spent hours talking with my husband urologist to see what he thought, why he thought it, etc. He made us feel comfortable with the results we should see, but also cautious that everything could be different than he expected. It took us about a month for each appointment (DH had to reschedule due to not asking off work for our first appt).
I'm glad you're finding good news! I love this group as well with everyone being so supportive!

@Carla2601 thank you so much! You know you’ve been my ray of hope through all of this when I found out your story. Hope you’re doing well!

@Lp96 im so sorry you find yourself here. It’s such a shit club to be in and that information gathering phase is so mentally draining. Have you joined the Facebook group ‘building families with azoospermia’. This thread and recently, that group, have been a great source of information and comfort to me! I’ve told some people in my circle what we are going through but no one fully understands.

update on our sample today:
9 vials were found, they thawed one and it survived so we are good to go with next steps. Crying with happiness (and riddled with anxiety over next steps but I won’t even go there right now!)

@IslaO oh my goodness! 9 vials is wonderful! I thought 6 from my DH was good 😆 oh such a happy day!

@IslaO thats amazing news! I’m so happy for you guys, I bet things feel so surreal at the moment for you both!! Hope your partner is feeling okay??

@lemons44 thank you! Twinges are good! It can be quite uncomfortable towards the end so just be prepared!

@Sleeter0893 yes first round, we felt so incredibly lucky! Glad to hear things are progressing well with you!

@IslaO Congratulations on the mtese success? Can I ask what his FSH was and if had NOA? Because ours is 50 FSH been given just 20% success

@donnie12 it wasn’t a mtese and I really started to worry that I should have pushed for one of these but not many do it here. So it was described as an exploratory biopsy a lot but think it was just a standard TESE. He has OA caused by being a CF carrier and having no vas deferens. Luckily I wasn’t a CF carrier so we could move forward without PGT added into the mix. His FSH was 4ish I think. I don’t remember it being out of parameters.

where are you in your journey now?

@Sleeter0893 thank you! I will definitely join this group on Facebook. We have told close family but just keeping it on the down low at the moment as we don’t know the full situation.
Did the samples your partner do show zero sperm?? This is the bit that I’m so confused about and worried. Have people had no sperm in sample but then find some through micro-tese with non obstruction azoospermia? Me and my partner have spoken briefly about a donor sperm in the worst case happens but we are hoping and praying there is sperm somewhere.

@IslaO im assuming this is great news from the comments but I’m just trying to learn the language behind all of this.. what is a vial? And also what is ‘thawed’ sorry if these sound like stupid questions.

our consultant mentions something about FSH but I honestly have no idea what that is and I’m now kicking myself I didn’t ask him but it was all about crazy. I wrote down low FSH I think? But I couldn’t be 100% certain that’s what he said.

The next steps are not in our current consultants field so hence why we are being referred. He’s basically said that we could either

1. be put onto injections to boost testosterone to see if they are then able to produce some sperm.
2. my partner will go for a biopsy/micro-tese to see if there is sperm then freeze it. Then start the process for me to get ready for ivf.
3. Get my ready for ivf then do the micro-tese and kind of do it then I’m assuming just get straight on with ivf without it being frozen?

are these the kind of things that were suggested to you all? And which ones did you go for. It’s very daunting knowing that they found zero sperm and it’s the unknown if there is actually anything there??

I’ve never known more about sperm and testicules in my whole life. Ahaha!

@Lp96 my husband had 0 sperm on his last 2 sperm analysis and had obstructive azoospermia (OA). FSH is a specific hormone tested in conjunction with LH and testosterone. Low LH and FSH are main indicators that point to a production issue rather than a blockage. It sounds like your Dr. has a good plan to try and raise his production levels and do a microTESE to see if there are any sperm in his testes that's just not reaching his semen.
A vial is essentially enough sperm for a single round of IVF (as explained to me). We received 6 vials which is enough to do 6 rounds of IVF. Movement from the sperm found is great, but not necessary for successful IVF.
You can choose to prepare for IVF and do the mTESE the same time as the egg retrieval to fertilize fresh, but if they don't find anything, you risk going through IVF with no sperm when you need them. Many people talk through what's the best option for them, but as we were set on no donor sperm, we did mTESE prior to starting the actually IVF medications and process to know if it was even possible. Hope this helps!

@Sleeter0893 oh wow this is really helpful and made me feel so much more at ease the fact your partner had zero but then found sperm for 6 rounds! That’s amazing, I can’t imagine how you are feeling right now! Do you know if the freezing of the sperm maybe damages the sperm or has any risks etc?

sorry for another question but what’s the difference between ivf and icsi? If I’m right I think ivf is where they let the egg and the sperm fertilises naturally (well as naturally as ivf is) and the icsi is where the doctors fertilise it? Which one do you go for? Do you get a choice?

thank you again!!

@Lp96 no problem! They do a test run to confirm that freezing and thawing will not be an issue come time for fertilization.
IVF is normally where they just put sperm and egg together and let the sperm do its thing to fertilize naturally.
ICSI is an additional step that is where the sperm is inserted directly into the egg. With surgically extracted sperm from mTESE and standard TESE, ICSI is required because the sperm typically aren't as mature as what is normally ejaculated. And yes, thank you! We're thrilled with the results and can't wait to get started! We're looking at a start date of June. The medications scare the crap out of me.. 😆

@Sleeter0893 have you heard of any stories where there it is non obstructive sperm and they’ve still been able to get some??
ah ok that makes sense now. Is there anything your partner did prior to the Micro-tese to help?

in terms of you and been ready I’ve head it can be a brutal thing to go through.. I’m already panicking about it and we are far off that yet. People tell you to just ‘relax’ and it’s the hardest thing to do when you are wanting something do badly. Im assuming the start mean where you have to get your body prepared with injections etc? Wish you both all the luck in the world! Can’t wait wait to follow on with your journey and hopefully share ours too!!

@Lp96 hey! I just sent you a private message

wow lots of new updates here!!!

@IslaO We are ok, thank you for asking. Needed some time away from here and social media as been struggling.

Fantastic news that they found sperm! Soo happy for you! And 9 vials seems an amazing amount! Don’t worry about the next steps, enjoy this bit and cross each hurdle as it comes.

@Lp96 p96 Welcome! Sorry you find yourself here. It’s a horrible situation but we are lovely and supportive here. There are some options, I think the first thing to find out is a potential cause, whether blockage or not. have his chromosomes been tested? As @donnie12 said, it’s worth looking for an andrologist who knows what they are looking at. I’d highly recommend Johnathan Ramsey. We’ve also seen Dr Yap who works in the same clinic as Mr Ramsay who also seems good.

@Ljp2022 2022 Wow, times going quickly! So pleased for you!

@lemons44 ns44 Good luck for your scan tomorrow! Sounds like this process is slowly moving forward now for you!

Update from me... We had our follow up at the clinic. The 3rd and 4th freezes returned to 0 sperm. The sperm they managed to freeze from the first 2 freezes, there's only a few, and its very poor quality. They're not sure if it will survive thaw and if used in ICSI its unlikely to result in anything, but they want to keep as back up. They've referred DP for micro-tese, its a 4 month wait so have referred him while we still wait for funding! (8 weeks now and no response, I don't think my clinic actually applied when they said they did). In the meantime DP has been restarted on Anastrazole in preparation for the micro-tese, as he responded well to it last time. DP is feeling very down and feels like its last chance saloon. He's not hopeful they will find anything and will have to consider donor sperm. Its soo difficult. I thought I'd accepted the possibility of needed a donor but now its coming closer to reality, I'm not so sure. I'm going to try my best not to think about it until we know for sure but we've had soo many set backs and bad news on what has been an absolute rollercoaster of a journey, its soo hard not to think about it.

@WhiskeyInTheJar33 I'm so sorry to hear about your update. I'm glad they have some as a backup, even if it's not what you're hoping for. TESE isn't the worst option as there's still a chance! Completely understand the mental break away from everything and just know we're all here for you 😀

@Lp96 I wouldn't say we are all under the care of Dr Ramsay as we are all with different clinics/urologists but most of us have gone to him for a single consultation to get a second opinion. It does sound like your current consultant is pretty on it though!

As @Sleeter0893 said when sperm is extracted from the testicles it can't swim, it just twitches. So ICSI is required as they wouldn't be able to swim to the egg. The embryologists add chemicals to the sperm to help get them twitching to see which ones are the sprightly ones to then inject into the egg.

It is normal for I think it's about 50% of the sperm to die when being defrosted and this it totally normal/expected and the clinics just use the remaining ones in the vial.. this happens for everyone so don't let that worry you. The only reason why I am worried about our sperm is because our clinic didn't check the quality at all prior to freezing. Normally clinics would to check there's enough.

I am not an expert on non obstructive azoo as ours was caused by damage to my husbands testicles from a previous surgery, but I do know that micro tese is the best option and that even with maturation arrest (where the testicles are failing to make sperm) it is still possible that there are pockets of sperm to be found. This is why a micro tese is so important as it is a thorough search. The very difficult thing with azoospermia is that even with all the tests, it is only really possible to know 100% if there is sperm if not by doing the surgery.

It is such a daunting process with many big words and new stuff to learn so please keep talking to us and asking questions. I know we've all felt that fear at the start of the journey or having to google everything and work it all out. It's tough. 💗💗

@IslaO 9 vials!! You must be so chuffed! That's an amazing result. Sorry if I've missed it but did they do the needle aspiration method or tese? Xxxx

@WhiskeyInTheJar33 sorry you're struggling at the minute. I've been thinking of you too and hoping you're ok. Totally understand why you needed a MN break. Sometimes it's easier to have a break from thinking/talking about it. Just know we are here when you need us.

I actually think that them referring you for a micro tese is going to feel less tough than the repeated SA/waiting for SA results. You guys have already been through such a rollercoaster. It will allow you to have a date to work towards rather than feeling in limbo. 4 months might feel a long time but it will probably go really quickly. Maybe you can also keep calling to see if there's been cancellations etc as that could speed it up. Sounds like a really good idea that your OH is going to take the medication again as it's a weird coincidence that when he was on that they found some sperm. And four months is a good chunk of time to get it in his system.

Have your clinic upped their game now? I saw your other thread from a while back on simply fertility and just wanted to say this is the clinic who messed us around so use that one with caution. xx

@donnie12 hope you're doing ok too. Are you going ahead with the mtese? x

@Sleeter0893 thank you. Yes am glad we have something in the freezer as back up even if not good quality. I just keep telling myself something is better than nothing and means theres a chance.

@lemons44 thank you. I'm sure the 4 months will go quickly. DP needs to be on Anastrazole for at least 3 months before the micro-tese and we are away June and July. Therefore aiming for August works with our plans. I'm going to try and not think about it too much and enjoy the next couple of months!
My clinic still isn't good. If we get the funding for micro-tese and not ivf (which is highly likely), we'll have the surgery done and then ill arrange to have the sperm moved to another clinic. I'm considering kings hospital or create (st pauls). I've heard some bad reviews about simply fertility too, so they are off the list.

Hi
It's so great to see stories similar to ours here, I'm sorry you're all going through this hell.
My husband and I were diagnosed with azoospermia last year. We had a urologist appointment at which he has examined and told it was non obstructive and there was a 99% chance of retrieving sperm. We went off to sign forms and were called back in and the consultant said he'd changed his mind, didnt explain why, but that it was obstructive and it was a 20% of retrieving sperm not 99%, that we shouldn't spend any money on a private microtese or ICSI as "children are expensive" and that we must think about adoption..After that horrible experience I pushed for an appointment with the more senior urologist who having looked at ultrasounds said it was obstructive with a blockage in the vas deferens. All bloods normal and that he was very confident of retrieving sperm, unless there was an unknown issue in production which they could not know till the op. At the moment we are waiting for a aspiration or microtese to be done in same procedure. It has been a very long wait so far of 8 months and due to operate in June so 10 months total from 1st urology consultation, 17 months since first GP sperm test.
My question for those further on in process is that I do not understand why the clinic, we are with NHS, will not see me until after the results of the SSR.
I am 35 and we have awaited over 15 months since first sperm results which is a lot more than their standard waiting time. They won't see me for screening or any assessments at all not even to discuss the process. I have asked repeatedly to do fertility tests, bloods etc, any screening or preparation but refused. They have now said it will be 2 months to next available appointment but won't book me until after the operation so 4 months away.
I'm just anxious that so much time is being wasted and there could be issues with me not identified. Is this normal to wait for after the operation results to start process for ICSI? Thank you if you've read to the end of this essay!!

Oops I'm a idiot, I meant our first consultation originally said obstructive then changed mind to non obstructive. Not the way around I've said above.