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.

Hi all,
Just catching up properly after a crazy work week.

@Sleeter0893 your issue sounds like it may be similar to ours. My OH had testicle surgery (for a hydrocele) as a teenager and we didn't realise but his testicles are now full of scar tissue making it impossible for the sperm to get anywhere (and damaged some of the tubules). Maybe your husband also has scarring from the surgery. I will be keeping everything crossed for you for a successful SSR 🤞🏼

@WhiskeyInTheJar33 thank goodness they have started getting their bums into gear, although they seem to be making it SO difficult for you 😤

@pomdownunder1 sorry that you keep having rude doctors. It sounds like maybe he wants to use fresh sperm for the ICSI which is why he wants your eggs retrieved first? As opposed to freezing any extracted sperm. I haven't heard of anyone else having it done in that order but I know that some doctors do prefer to use fresh sperm not frozen so I don't think it's out of the ordinary.

@HR01 happy they found sperm but sorry you're in this worried position. I also still feel worried sick deep down about our sperm that they found as they didn't do a thaw test on ours and I won't relax until it is actually used. 6 vials is quite a lot for them to search through though so I will be keeping everything crossed for you that there's some strong sperm in there. Did they know what has caused your OH's azoospermia if the tests were all normal?

Hope everyone else is ok. Honestly reading these posts lately makes me so annoyed at all the crappy doctors and clinic staff we have to deal with. I know there's probably lots of good ones but between us on this group we really have dealt with our fair share of crap in terms of clinics and staff!

xx

@Magix86 you are not in an incorrect group. My husband had 4 down in his sample 6 years ago, 1 sperm 4 years ago, and none now. He could very quickly turn to having nothing or could continue having some production but there's a blockage preventing all to get out.

@lemons44 sorry you're having such a tough go of funding!! We just got our loan approval today and can finally start scheduling procedures! Should be another month or so until we can get in for TESE. That wait might kill me.. lol

Morning everyone! Hope you’re all doing ok.

@lemons44 i agree- the stories of crappy treatment at such a delicate time are all just infuriating!

We had our follow up appointment on Friday with urologist who reviewed our genetic tests and mri results. Confirmed OH has no vas deferens and no seminal vesicles and said this was due to him being a cystic fibrosis carrier. The reason I couldn’t make head nor tail of his genetic report is that it’s actually super rare- he’s a compound carrier which means he Carries two different CF mutations. I think this means that all of our children will be carriers of one or the other mutation so I’m just thanking my lucky stars mine came back negative.

Big day for us today- our first sit down with a doctor in an IVF clinic. I can’t believe we haven’t actually done this yet! The last 6 months have been filled with us getting to the root of the problem and me getting blood tests etc on my own so todays the day we sit and review all that we have so far and hopefully make an action plan.

if I’m honest with myself, I think I have been procrastinating on the TESE front and doing everything I can beofre actually locking in a date for this as it is so terrifying for me but I can’t procrastinate any longer. The urologist did say he believes OHs testicles are ‘full of sperm’ so I am just repeating this over and over in my mind.

no other news from me so would love updates from you girls. @Ljp2022 always thinking of you! And @Carla2601 you are forever my beacon of hope!

@Sleeter0893 thank you. That's helpful. OH has been referred for an ultrasound and genetic bloods (only y deletion and karyotyping so far).
The doctor said we then need to see whether he will need SSR or not. He said he would refer us for NHS funding although said it might be declined as my OH has not been registered with a GP in this area for 1 year 😒 even though I have and referral was in my name initially....so the wait continues unfortunately.

Good to hear you can get going now, that must feel good 🙂

@IslaO it is sounding so promising for you. How did the appointment go today?! You just need to be brave now, bite the bullet and get it booked in! 💗

@Sleeter0893 That's great you can start booking procedures! Hopefully you won't have too long to wait for the TESE.

@Magix86 hope you're doing ok. I missed your previous message but if he had 3 sperm that is really good news as it shows he CAN produce something so hopefully they can get to the bottom of it! Definitely makes sense to be on this group with those numbers... nothing worse than seeing people in other groups talk about low sperm counts when they mean 'only 1 million sperm' or something similar 🙄🙄

@IslaO it is such a worry isn’t it but if it helps they said to us about being full of sperm so hopefully you’ll have a similar experience….this time last year my OH hadn’t had surgery and we now have a 9 week old baby so it can happen and I’ll be hoping like anything that happens for you too! 🙏

re CF, so sorry it’s happening but I guess it’s good to know even though it’s another thing to have to think about and worry about.

good luck and keep us posted

Thank you @lemons44 really do appreciate that 😊 and yep! I must have read through hundreds of threads on here reading about low sperm counts 😅
I hope you're doing ok

@IslaO congrats on moving forward!! I understand the concern of how TESE will go.. we finally got scheduled for March 29th to know exactly what we're looking at. The doctor feels there's a 95% chance of finding sperm so I'm trying not to stress.
@lemons44 omg.. I know! It's incredibly frustrating when someone says they have low sperm count and it's anything more than 500,000. I wish our significant others a speedy recovery!

@Sleeter0893 that's very good odds! Are they planning a micro tese or normal tese? Fingers crossed for you 💗 it must feel a relief to have a date set

@lemons44 they're are doing a regular TESE because his blockage is a birth defect and there's no correcting and no use searching further. There's always a chance he's not producing anything too, but unlikely since he had previous semen analysis', even if they only had 1-4. So happy to have a date though! Just time to not stress lol

Hi everyone,

Just catching up on everything. @Carla2601 knowing that this time last year, your OH hadn’t even had his surgery has really boosted me. Sometimes the end goal seems forever away but that puts it all in perspective. I hope you are enjoying mum life and your little one is doing great!

@Ljp2022 thinking of you and hope you’re doing ok. @lemons44 how is your funding issue going? Have you had an egg retrieval yet? Just reading back but can’t figure out if you have.

@Sleeter0893 when is your OH’s TESE booked for?

we had our first IVF appointment last week. It went well but the consultant seemed to think my OH had full blown CF as he has two different mutations. I was happy with my follicle count and all looked ok with my uterus. I was under the impression that we would get a call later in the week to discuss dates for Tese as that would be first step. However, when I got the call I was absolutely fuming to hear the nurse say that they wouldn’t proceed with the Tese until we saw a geneticist- there are just two geneticists in the whole country so the waiting list could be 6months or more. Our urologist/andrologist said we should see a geneticist but this could be done in parallel to IVF etc. I was just so frustrated to get this news over the phone when it wasn’t the impression we got in the consultation. Going to another clinic on Thursday as I think this is a bad sign of what’s to come with this current clinic.

would love to hear all of your updates if you have any. I’ve had to come off social media as it was all becoming so overwhelming and full of announcements that were triggering me.

Oh @IslaO that must be SO frustrating. I don't understand why they won't do the TESE until you've seen a geneticist? Is it because if he has CF they need additional measures to do the procedure... Like how ours had to be done at the hospital because my OH has a medical issue that effects his heart? Hopefully this new clinic gives you a better vibe! You've waited so long already I totally get that you just want to get cracking!

We haven't had any issues with our funding luckily. It's just been approved! 🎉 Can't believe how quickly it has happened. 2 months from NHS referral to our IVF funding in place. We have a consultation on 8th March and then will start on my next cycle. I have been reading a thread on here though about a national shortage of IVF meds and I'm hoping that won't delay me starting. Trying not to think about it much to be honest as I'm still absolutely petrified that our sperm might all die. I get panicky about it all the time.

@lemons44 this is so exciting!! Your next chapter is so soon. Worrying about the sperm dying.. unfortunately I think we are all destined to worry about every single step of the way. That’s why I think I’m going to pull the plug on my current clinic and go for a doctor that js reknowned for his honesty but sense of humour and compassion. I just can’t face being on a conveyor belt at such an awful time. I honestly feel so consumed by everything- you should see the notes on my phone with lists of questions that pop into my head. It’s an insight into my brain and it’s not pretty!

three best friends all due babies in the next month so I am going from being optimistic, focused on being organised, feeling hopeful…to completely spiralling and verging on a bloody breakdown.

what have your clinic said about they sperm? Will they thaw it the day of your egg retrieval? Did they pass on a report on the quality of it?

@IslaO how frustrating! I feel your anger, that feels really unnecessary to say that over the phone too and not in the appointment!

@lemons44 sounds like things are progressing well! Be reassured, I was also told there was a shortage of meds but they just put me on a different type which did the exact same thing :)

I know this is an old thread, but I was wondering if anyone has been in a similar position to me. DP has azoospermia. It is very likely (given health issues as as a child that caused complications – I won't go into more detail about this) that there really is no sperm at all and likely no possible treatment. There is, however, a very small chance. He is refusing to talk to me about it at all (I've had to basically piece together what I do know from a few comments he has made) and doesn't want to get the scan or the tese to see if there is any usable sperm. He also doesn't want to talk about donor sperm as he sees it as being 'me having a baby with another man'. I have tried to talk to him about it sensitively but he gets angry with me. I know he is hurting and feels embarrassed and (in his own words) humiliated. But I'm also hurting and feel so alone. I desperately want to have a child and am in my late thirties. I've said I will stop talking about it for two months to let him think about things in his own time – although we found out about the azoospermia in November last year, and I do feel like I am running out of time if there is anything we can do. I'm just so sad and I'm angry that the treatment he had as a child has had such a huge impact now – and that the people who were meant to be looking after him (nurses, drs, parents) seemingly failed to do so. It is an issue that if it had have been dealt with appropriately would have caused no fertility issues. Has anyone else been in a similar situation? I have tried posting on the main MN boards but just seem to receive insensitive reply after insensitive reply... I don't know what to do.

Hello
I watch this thread as we have been going through treatment for NOA. We were put in touch with Miss Pippa Sangster who we saw in London at King Edwards 7th hospital. She has been nothing but amazing for us from start to finish (successful microTESE!). Her whole team is fabulous (her PA is a guy called Cecil who went above and beyond for us at every step). We were seen quickly and organised the surgery within a month.
I thought you might like her details as she looks after lots of patients who had cancer or treatment as children within the NHS at UCLH where she runs the male infertility service. I know this because she looked after a friend of ours there and he recommended her. She's really into hormones and treats men before their surgery to improve success. You could ask your GP for a referral to her at the NHS as she can see people from anywhere in the country.
I suppose you need to get your DP to agree first which might be the hardest part! Good luck xx

@mj88 Thank you for replying, and I’m so happy to hear you had a successful micro tese! Unfortunately DP just won’t engage with me on any of this… I was recommended Jonathan Ramsay and then his PA recommended someone else - my DP did get in touch but won’t make an appointment.. I know I can’t force him to get treatment if he doesn’t want to but I just want him to talk to me and for us to be able to discuss what our options are without him getting angry at me for bringing it up. I’m devastated and not coping very well.

Urgh so hard - men not great about talking about health at the best of times. Maybe point him in the direction of other men

www.himfertility.com/

@UnluckySeaUrchin so sorry your in this situation. It's so hard for men, I suspect he feels shame or embarrassment and feels less of a man, through no fault of his own. My DP certainly felt this way and struggled with the diagnosis at first. He was also dead set against a sperm donor too but has slowly come round to the idea.
The donor conception network have some fantastic resources to help. There's a letter written by a man to give his experience.
I also recommend "knackered knackers" on instagram. He has azoospermia, failed micro-TESE and has twins via donor sperm.

Like you said, give him some space to process what he is going through and hopefully he'll talk when he's ready. It's soo hard though when you feel like your clock is ticking. We are a lovely group of ladies with a listening ear so feel free to vent if you need x

@UnluckySeaUrchin I saw your thread and wanted to scream at the idiots on there. Please ignore them, they have no idea what it is like to be in this situation. All the people saying 'we had ICSI and didn't need an operation' I just kept thinking oh f*ck off! I would hide that thread now and don't look at it again.

My DH has also struggled a lot with it. He went onto anti-anxiety medication (which he is still on) and even now after his micro tese he is still struggling. He was open to the idea of donor sperm but was straight up against adoption, which is my preferred second option.

This type of diagnosis is just so difficult 😞 I think you're doing the right thing by giving him space to process it all. It sounds a bit like your OH has maybe resigned himself to no hope of there being any sperm at all. Obviously I don't know what your OH experienced in childhood but I think with most causes (childhood mumps, undescended testicles, injury, past surgery) there's usually a CHANCE of something. Even with Sertoli cell only syndrome which is often considered one of the more severe types, there can be 'pockets' of sperm in the testicles. Perhaps he is so hopeless and resigned to bad news that he just can't face exploring it.

You say he won't consider sperm donation - would he and you maybe consider double donation or 'embryo adoption' ? It could be another option to consider.

I think giving him some more time to process it all is one of the best things you can do right now. How are you looking after yourself? Have you told any friends or family what's happening? You can always talk in this group. I think a lot of us get how shitty azoospermia is and I know a lot of our OHs have and are struggling. xx

@UnluckySeaUrchin i think all of the ladies above have said it all- such an awful situation and it tests you as a couple like nothing else. I wish I had a solution for you but just know we are here to listen. My OH and I have always aligned on things but this journey and potential options have divided us like no other! Sending loads of love.

how has everyone’s week been?? We were told by IVF clinic #1 that they wouldn’t proceed until we got a genetic counsellor. This country (Ireland) has a grand total of 2 geneticists so there’s a long waiting list and it’s €500 for 45 minutes. Absolute robbery! From what we understand, because I am negative, we are not at risk of having a child with full CF. So we went with another clinic and had our first appt yesterday. I have to say, meeting a doctor we clicked with has just lifted so much off our shoulders. He was utterly amazing. Sat with us for an hour and my OH spoke to him more than he’s spoken to anyone about things. We both left feeling amazing and excited to proceed.

one question that has been playing on my mind was ‘is the lab used to dealing with testicular extracted sperm?’ And he just said to me ‘I’m sorry to tell you, you’re nothing special- we do this all the time’. It was such a relief to hear as I often feel like we are 1 in a million!! He spoke about using a solution called sperm mobile that the embryologists use to ‘wake the sperm up’ and sort the dead from the viable. This is really interesting and I remember @Ljp2022 and @lemons44 were talking about biopsied sperm not swimming like normal sperm and being a challenge for embryologists.

ladies let me know how you all are. @lemons44 how are you feeling about stims? X

Hi all, hope everyone is ok. We are just patiently (or perhaps not so patiently 😂) awaiting our M-TESE in a few weeks. Sorry I’m rubbish at keeping up with messages but have been checking in on the thread now and then.

.@UnluckySeaUrchin im sorry you’re in this position, it’s so difficult when there are disagreements about how to proceed. My DH was against donor sperm initially for the same reasons, but as we’ve talked about it he’s come round to the idea, I think helped by seeing other people’s stories and also the realisation that there are so many step families in the world (so lots of people are raising non-biological children). I would really recommend knackered knackers on Instagram. He is lovely and responds to DMs too. Perhaps you could suggest your DP just has a very initial chat with him about how he is feeling? I’m 36 so can also empathise with the panic about time running out. Look after yourself, it’s so difficult emotionally xx

@UnluckySeaUrchin we also had azoospermia however a really different experience so I don’t really have any advice sorry but didn’t want to scroll past without acknowledging your post. Sorry your past MN experience hasn’t been great, this is a wonderfully supportive thread so if nothing else you’ll definitely find some kindness and a place to vent here.

I really hope your OH comes round to some further investigations after some space and time to process….I know you say November but it is so overwhelming and so much to process. Although absolutely appreciate how horrid that feeling of time ticking by is. It’s just a crappy thing to go through and I’m sorry it’s happening to you

Thank you for all the kind messages. I don't know why I posted on the main boards – it was a pretty awful experience tbh! @lemons44 I've taken your advice and deleted the board from my watched posts list.

I think he would be more open to the idea of double donor (egg & sperm) – I just struggle with this a little bit as I don't see why we should use a donor egg when it's not needed... it seems a bit unfair on the potential child? I don't know.. I need to look into it more. I just want him to get the initial consultation so we actually know where we stand, although I think our chances are very, very low of there being any viable sperm.

I can't bring it up without him getting angry, so have decided to not say anything until end of April (2 months) – so I can't really suggest he read anything / go anywhere... it will just be counterproductive.

We just feel so far apart at the moment. It feels like we don't even know each other any more. Having a family is all I can think about at the moment and I can't talk to the one person who I share my life with. We also have no sex life. It's like he has lost all interest in me, doesn't even want to hug or kiss me any more. I feel like we're flatmates not partners and I'm so sad.

I don't have any family here – they are all on the other side of the world. I have told my mum and sister what is happening. It's hard as my sister just had her fourth baby, and my mum just doesn't seem to know what to say (apart from suggesting adoption because one of her friends did it in the 80s and it worked really well for them... which isn't exactly helpful). My dad and sister always talk about how having a family is the most important thing you can do, and how you don't know love until you have a child. And I've found that I'm having difficulty even staying in touch with family at the moment. I have told two friends and both also responded with 'why don't you just adopt' which I found really hard too. I just don't feel like I have anyone I can talk to who understands.

@UnluckySeaUrchin Sorry you are going through this. Give him a little bit of time but ultimately think he is being a little unfair from what you have said. Suggest he goes onto the male fertility forum on reddit. Mainly azoospermia men on there and would be a great help for him especially as it's mainly male posters with the same condition.

As he had tests to see if it's non Obstructive or Obstructive Azoospermia? You will know by the blood results. High FSH and low T will be NOA, normal bloods most likely Obstructive. If it's Obstructive then the chances of finding sperm are extremely high. If it's NOA then it's a lot lower and donor sperm should be considered as a backup in case of the unfortunate high chance of not finding sperm after an mtese operation. He has to see a urologist if not already.

Really don't see the point of donor eggs if nothing wrong with you. Just a massive extra expense.

Give him a couple of weeks to digest the news but really he should be taking matters into his own hands by then and looking for answers and solutions. Azoospermia is an awful diagnosis to receive but it could be ALOT worse. Wishing you the best of luck.