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.

I've just been doing research and it would seem that any glimmer of hope for us to retrieve viable sperm would involve two operations (according to some medical studies I found online) and we would need to wait around 10 months after the first operation to do the TESE and based on this research there is about a 10% success rate (likely lower for us due to age). It would be difficult enough to convince DP to undergo one operation and then having to wait to do the TESE means that I would be almost 40 by the time we were able to try ICSI if it were even successful. I'm on the verge of having a breakdown. If it were me, I wouldn't hesitate to go through this process but I can't even talk about it with DP. I feel like I have no control over what is happening.

@UnluckySeaUrchin i am so sorry this is happening to you. Azoospermia is a kick in the teeth like no other but you have many different layers to your story. I wish I could help and solve your problem. It’s so so hard. Could you arrange a few sessions with a fertility counsellor or therapist? I did this but I didn’t quite click with my therapist- I wouldn’t rule it out in the future though and I know many people that it has really helped. You wouldn’t have to tell your OH you were doing it to begin with and just see how it helps..

Ignore if you feel this is too personal but why are you pitching your chances of success at just 10%? As @donnie12 , OA has quite high success rates and NOA, although less high, is usually pitched up at 50%?

rather than presenting him with options (eg get a Tese or proceed with embryo adoption) why don’t you talk about shared goals. Is it a shared goal to have a family? If so, what are you both willing to do to achieve this goal? it could be a good place to start but I understand that you don’t feel like your relationship is in a strong place at the moment so it might be hard x

@IslaO I've just sent you a PM x

@IslaO thanks for your kind words. It really is a kick in the teeth. I feel like I have so little control over the situation too – even though it affects both of us.

I did have a few sessions with a therapist just after we found out – it was three expensive sessions and then she recommended I speak with someone else as she didn't feel she could help. It was so emotionally exhausting to go through everything with her and I just don't feel up to doing it again and again until I find the right person (even though I know it would probably help). I'm just so exhausted at the moment. I'm waking up at 3am (pretty much on the dot?!) every night and not getting back to sleep. I've sent you a PM explaining why I think our chances are so low – I just want to be a bit careful about posting personal medical information that isn't to do with me on a public forum, especially as it's very specific to my DP. I've started collecting research / information and I will speak to him about everything properly at the end of April. I really hope that he does something before then (ie. makes an appointment) but I don't think he will..

Sorry for posting so much here today... it's not been a good day (a feeling I'm sure that you're all familiar with...)

I'm now thinking about getting my eggs frozen so I at least feel a little bit in control. When I had my fertility testing done in November my AMH levels came back at 5.5 – this doesn't seem that great... do any of you lovely posters have any insights into this and whether it would affect the success of harvesting / freezing eggs? Or do I need to make an appointment with the fertility clinic? thank you x

@UnluckySeaUrchin so sorry you’re feeling this way, it’s horrendous but you’re right lots of us can relate and understand. You’re not alone even though I know it feels that way. You can always post on here for support.

Just a thought but if you’re going to do an egg retrieval (and I definitely would - give yourself all the options you can) could you speak to the clinic about potentially trying to have a go at I don’t know say 50% depending on how many you retrieved with donor sperm? Just thinking that way if your DH came round to it, had the ops and you got sperm you could use both the eggs you might get then, plus the younger ones from now but if you didn’t you’d have some embryos hopefully if you did want to consider donor sperm? My understanding (I’m not medical so you’d definitely need to check) is that creating embryos might be easier before the eggs are frozen.

sorry that was longer than I thought it would be - just trying to think if there’s anything you can do whilst you wait to take back even a bit of control as it’s awful feeling it’s all out of your control

@UnluckySeaUrchin I can so relate to the no sex aspect. DH wouldn't have sex with me for months after his diagnosis. I think for him he just felt like less of a man and therefore struggled to be intimate with me. This actually put a big strain on us after a while. So I really do get where you're coming from with that. It makes the whole thing feel harder because you don't feel as close.

I think egg freezing is a good idea. Not just for you but in time your OH may really come round to the idea of donor sperm and so by freezing your eggs you would be sort of providing some insurance for BOTH of you. I would frame it like that when you talk to him too, that you're a team, and what you're doing is so that when he feels ready, you have options together.

I agree with what @Carla2601 says about it enabling you to take some control. It's hard because his actions will affect the rest of your life and you're being expected to just not talk about it.

I would use this time until April to get your own thoughts together as much as possible and maybe even put all your feelings into a letter. So you can be sure nothing you're feeling or thinking will get lost in a heated discussion. If it were me I would put in the letter all the reasons I love him and want a family WITH him and want to get through it together and explore options together. Then give him time to digest before talking. Sorry if it sounds like I'm speaking out of term it's just I'm really trying to imagine myself in your shoes and what I would do!

Sending love and support, we've got you 💗

@IslaO so glad this consultation went better for you that the experience you had with the other clinic. How refreshing to have such a good doctor xx

Hello all,

I’ve just got to the end of reading this whole thread from start to end.

We found out DP has Azoospermia this week and are still in shock to be honest. I’m the classic doctor google addict and this forum has given me both hope and strength in what feels like such an unfair situation to have ended up in.

You are all amazing.

I’m worried about what it’s going to do to our relationship, we were so excited to start a family and the shock of realising it’s not just the one time thing it seems to be for everyone around me is a hard pill to swallow! I’m finding it especially hard finding out in the approach to my sister’s birthday next week who died 7 years ago and should be turning 28.

DP seems in shock to be honest and the options all seem a bit overwhelming. How long did you all wait before you saw a doctor? I’ve managed to book an appointment with Dr Pippa Sangster in a few weeks (which sounds like she’s a good person to have found) but not sure he’s up for getting on with finding out what’s going on yet. Patience when you’ve already been TTC is so hard! I’m such a planner and just find myself wanting to control and manage and spreadsheet the whole situation. Also aware it’s not my body and it must be so hard for the men. I’ve had a suspicion something has been up for a while because DP had some surgery as a child and then has had issues with an overactive cremaster muscle. He’s also low sex drive and tired so often! He only did a sperm sample to appease my anxiety and I’m gutted for him that my worries might have been justified.

Anyway, just wanted to say thanks for all sharing your journeys, it really is amazing to have a community of people who have been where I am now.

@Anmika93 so sorry to read your story and that you’ve found yourself here but everyone is so lovely, you’re in good company.

I can only speak to what we did and this definitely won’t be right for everyone but we saw a doctor immediately, we booked a private scan for the next day (wouldn’t recommend this they’re not specialists in this area at all they’re ultrasound specialists and they told us our odds were horrible and it was in fact the opposite) and then Mr Ramsey in about 3 weeks that felt like 3 years. That was January 2022. He then had the surgery in February (delayed as my OH got covid) then I had my egg retrieval in March, transfer in April and we had our baby in December. It absolutely won’t be like this for everyone and I know we were incredibly lucky but I thought it might be helpful to provide a bit of hope as I remember all too clearly how dark those days are after initial diagnosis.

My OH has absence of VAS which I think from my limited knowledge is a ‘good’ reason because it’s a transit issue as opposed to a sperm issue.

Hope you’re doing as well as you can be and are managing to have a relaxing weekend

Oh @Anmika93 Im so sorry you find yourself here. I honestly thinking back to getting the results of our first ‘zero sperm’ analysis and shiver- I genuinely think it was the worst day of my life. However, although the journey is long and hard, I do believe that that was the worst day of the entire ordeal. After that, we kind of mourned and cried for about a week. Then we had a conversation that I believe really helped shape our journey. I asked my OH what do you need from me in this? And he asked me the same. His answer was ‘I need you not to blame me because I already feeI so guilty’ and I said ‘I need you to be open to doing everything and anything to solve this problem with me, and I will do the same’. And since that conversation we have both kept our promise. I always make sure I refer to it as our issue and not his and he goes to every appointment without kicking and screaming, takes his vitamins etc.

we didn’t move as quickly as @Carla2601 (whose story genuinely changed my mindset from doom and gloom to hope). We went to an IVF clinic and talked options but we were both in agreement that we wanted to find the cause of the azoospermia before just jumping into fertility treatment. We booked in with a urologist but had to wait a few months. He was great and found the root cause and sent us for some additional tests. Got those so we now have all our info and we are back in the fertility clinic. HyCoSy booked for me tomorrow morning and OH’s retrieval booked for end of April (after we bugger off on a two week holiday to South Africa).

it sounds like you have taken action already and I’ve heard good things about Dr Pippa. At this point you just need to take care of each other and know you’re in it together and ready to do what you need to do.

there is a lot for you to come to terms with- I remember really grieving the fact that I would never conceive naturally and it would always be IVF. But I have made my peace with that now. Things come in waves. We all understand how you’re feeling so post as often as needed xxx

@Anmika93 sorry you find yourself here too ☹️ I think that's really good you have scheduled the appointment already. It will feel really slow waiting for appointments and answers so I sometimes think it's better just to book the tests and appointments in the diary, and then wait for the emotions to catch up.

I agree that the first few days and that first week especially is the hardest. We had lots of tears and cuddles that first week. Just take it step by step, I am sure Dr Pippa will be able to work out the cause pretty quickly.

If you can I would consider talking to your OH about getting his hormone blood test at the GP. Just because this is a pretty quick test that only takes a few days to process and will be something that Dr Pippa can look at when you see her.

I really get the control thing as I am the same and love to be organised and I know there's quite a few of us on here who are all that kind of person! I have a big folder with all of our test results in and it even has a contents page that I printed out. But it's helped me to cope by 'ticking off' each test.

Xxxx

@IslaO amazing you have booked the SSR in! It must feel a relief to have a date for it.

@springflowers2023 I know you have yours coming up soon too.

Hope you're both feeling ok. I know it's bloody nerve wracking waiting for it. xx

@lemons44 it feels good but so scary- it’s our D-Day so I’m just terrified to face it!

how are you doing? Have you started stims? Or am I jumping the gun a little? Think of you often and you too @Ljp2022 x

@IslaO yes I totally get that 💗 it really does bring out so many emotions this waiting x

I am doing ok, thank you! I am hoping to start stims on April 1st (assuming AF arrives tomorrow on time) for a provisional egg collection of 4th May. I am trying not to get any hopes up and just be level headed about it all. Amazing to hear you have booked a holiday too! We went away last week and it was bliss to get away from day to day life for a little bit xx

@IslaO sorry I meant to say I am hoping to start down regulation on April 1st. I've been put on long protocol so hard down reg first x

Hi All,
Welcome to everyone new in the group. Im sorry you all have found yourself in this position, I wouldn’t wish it on anyone. It is one of the hardest things I’ve been through but having the support of the group has been priceless. @lemons44 so pleased to hear that things are progressing and you have some provisional dates booked in! Be really kind to yourself in this time, because the hormones can really take their toll.

@IslaO great news about your SSR! Have all my fingers crossed for you.

Had my 12 week scan last week but they did it a little early so going back next week. Can’t believe next week I will be 12 weeks. Sending love to you all, there’s light around the corner x

Hi everyone. I've been quiet for a while but keeping up with all your posts. Hope you are all doing ok. I'm feeling really anxious right now so thought I'd reach out! We went for our initial consultation 4 weeks ago and I was told to go for bloods and that I'd need another scan. OH needed bloods and is giving another semen sample this week. He was told he'd be referred for a scan also. I had bloods last week and today received a letter with a phone call appointment with the fertility consultant we saw 4 weeks ago. I've obviously jumped immediately to thinking there is a problem - when bloods have all been fine before now. There are no results on the NHS app tho....I assumed we wouldn't be given a further appointment with the clinic until OH had all his tests done as well as my scan which I'm still waiting for.
Does this sound usual? Or am I right to feel so suddenly anxious?! Is there anything else this call would be for? I'd assume that if my blood results were back then I'd be able to see them on the app?
If anyone can help put my mind at ease it would be much appreciated 😟 this phone call appointment isn't until the end of next week!

Hello, I hope it's ok to post here. I've read through the thread and it has really helped me wrap my head around the situation we've found ourselves in.

A bit of back story. Possible trigger warning. DH and I were TTC for 3 years before we began IVF. I needed a large ovarian cyst removed which damaged my left ovary, but thankfully didn't have much of an impact on my AMH. My husband had a very low sperm count (less than 0.1 mil/ml). Our first cycle ended in a miscarriage but our second cycle resulted in our baby boy. We have started the process of a sibling round to find out my husbands sperm count is zero.

When he was first found to have a very low sperm count, he had hormonal blood tests, genetic tests and a testicular ultrasound and all were clear. He will have a repeat semen analysis in 3 weeks and hormonal bloods done again with a consultation shortly afterwards.

I just assumed it would be OK again. My head is spinning trying to make sense of it all. I've tried to do lots of reading and it seems as though if all tests come back clear then it is likely to be obstructive azoospermia, even if an obstruction isn't seen on an ultrasound, is that right?

I've had him on Impryl for the last 6 weeks so I'm hoping that starts to make a difference. He also had the flu around 8 weeks ago had had a very high fever for a few days (up to 40c), could this all have impacted too?

Hi @Magix86
We got our initial tests done privately so I can't say for certain how NHS works but with our private tests they wouldn't show us any test results before a consultation. This is because they think people can read the results and get confused interpreting them and then have to wait for an appointment to seek clarity. For example even when my husbands genetics tests came back fine they didn't want to give them to me until we had our consultation and the consultant could explain the results properly.
When is the appointment for?
What was the blood tests for? If it was for AMH and you had this done before I very much doubt it would have changed much as AH declines quite slowly. If it was for hormones I can't imagine it would flag anything that wouldn't be fixable. For example I needed my thyroid checked as they said if the result is a bit high it just means they need to put me on a type of medication before IVF. So try not to panic. Let us know when your have the appointment.

Hi @itsmschanandlerbong sorry you find yourself here and im so sorry to hear about your previous miscarriage ❤️
Being as your OH had such low numbers before I would double check if the clinic did centrifugation (I think that's how you spell it). Basically they spin the sperm really fast so any sperm clumps together and is easier to see. In answer to your question about flu. I believe that yes that could have affected the sperm. I think Mr Ramsay even asked my OH if he had had corona for that reason, as the high body temperature can kill them off. Sperm takes about 3 months to fully produce so I would consider moving the repeat semen analysis to be about 3 months after the flu to see if that makes a difference.

@Ljp2022 Thank you. What meds did u use for downreg? Wow almost 12 weeks already! That has gone SO quickly. How are u feeling? Xxxx

Thank you @lemons44 that's helpful. I'm aware I'm probably panicking for no reason but I couldn't help after reading the letter thinking of all the bad things it could be! I had bloods for thyroid, bbv's plus fsh. They didn't want to repeat lh this time and didn't mention amh...I think because perhaps the NHS mostly consider fsh and not amh?? I could be wrong. But I've never had a test for amh. I just wasn't sure why they'd offer a follow up appointment without all the tests having been done, ie my scan, oh's sperm analysis and his scan also. And also unsure why the appointment is only addressed to me and not asking for both of us to be present. Its not until next Friday.

@lemons44 im sorry but I actually can’t remember! I was on burserelin I think but they considered putting me on a nasal spray when supplies were low because of the shortage, can’t remember what it’s called!

Could the appointment be for further tests?

@lemons44 thank you, I'm not sure if my nerves could hold for 3 months, but we could ask for a repeat 3 months after this one if it's still showing no sperm. I think we'll just need to wait until then and go forward from there, trying not to let my mind run away from me.

@itsmschanandlerbong perhaps, yes. I know there is no way of knowing until I get the call and no one has a magic ability to tell what will happen! I guess I just posted to share my anxiety really, but do appreciate there's not much anyone can say at this point. I'm going to give the clinic a call tomorrow and at least find out what the appointment is for 🙂