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.

Thanks @donnie12 and @lemons44 for the speedy replies!
I've read through so many threads on here and a lot of googling so completely expecting for my partner not to really be given much within the NHS. I've seen so much about Dr Ramsey so we might consider this, but worried about booking any appointments with him until we have been seen by the NHS clinic next week - I worried if we start anything we might then not be eligible for NHS funding?

He did have hormone tests which were all normal but frustratingly the GP missed off the request for FSH! He had to ask for this a second time and finally went on Monday- just waiting for the results now 🤞🏻

Hi ladies,

been quiet on here as work has been crazy. Im finding it so hard to feel passionate about work these days as my mind is constantly elsewhere. It’s like I always have my fertility checklist going in my head and im always thinking of ways to solve our fertility struggles and it keeps me from engaging fully in work and sometimes even socially which is new for me. I found that since we had our appointment where the doctor found the reason for my OH’s azoospermia I relaxed a lot. The crying stopped and the waking up with anxiety subsided. This week it came back with a bang. I’ve been googling success rates of sperm retrievals for CF carriers, trying to dissect his MRI report before our appointment to discuss it next week and generally going to dark places in my mind. Really struggling and it’s such an awful feeling- I know you all will know what I mean. I just am so sad and frustrated that this journey is so long, difficult and so full of pain and worry. The waiting time between appointments is killing me too. Just need to vent.. I’m hoping my bad week takes a turn.

@lemons44 how are you and what’s your next step/when?
@Ljp2022 thinking of you?
@WhiskeyInTheJar33 are you ok?

welcome to all the new joiners- hate that you’re going through something similar but here to support xx

@IslaO I feel you. At one point I even considered going off with stress because my mind was so overwhelmed. Every stage feels like a big hurdle and a wealth of internet Googling. Will your appointment be to discuss next steps next week?

had my scan this week and am very grateful to say that we saw the heartbeat and all looks good. They aren’t sure what the bleeding is but fingers crossed for the next 5 weeks 🤞🏻

@Ljp2022 my heart skipped a beat when you messaged I was so preying you would have a positive update and not a negative one. I am keeping everything crossed for you for the next five weeks 💗💗

@IslaO I also really feel you. I have had times where I've spent hours and hours and hours obsessively googling things and looking at test results in such a panic and not even stopping to get a drink or do a wee, just in a worried trance. Its like trying to find that one website or that one piece of data that just reassures you that 'everything will be ok' except no website can say that so it leads to more searching and looking and it's exhausting. I've described this process to my friends and family as 'emotional torture' because that's what it feels like. Please be kind to yourself and cut yourself some slack with things like work... it's a difficult thing to be going through and you're doing your best ❤️

Do you think you can book the SSR for soon?

@Magix86 can you google your CCG policy? Mine was called something like 'clinical Priorities Policy' and it sets out what private treatment you can have without affecting your NHS entitlement. We had all of our tests privately and our SSR privately and for our NHS area that is fine and we are still eligible for NHS IVF, but it really differs by area. However I suppose if you have your appointment next week you can ask. Mr Ramsay has been off sick since early December. I don't know if he is back now (he was supposed to do our SSR in December but couldn't due to being unwell). To get your moneys worth it's always best to go to him with as many test results as possible so that he can really assess the situation, rather than pay to have tests there (which are more expensive). That's so annoying about the FSH! I had to have a chlamydia test as part of our IVF referral and the nurse did it at my GP and she did it wrong 🙈 so I had to have it done a second time, although this time was allowed to do it myself.

Nothing to update from me. Just waiting on our NHS funding to come through.

xx

@Ljp2022 i am so delighted and relieved to hear this! So happy for you! I think I just need to hear success stories to keep me going and let me know it’s possible. I also think I have just waited so long now (azoo diagnosis in august) and we’ve been through so much testing that I just need to know if there’s actual sperm now and if we can make some embryos. The waiting is driving me insane! How are you feeling overall? Has the scan helped you relax a bit?

@lemons44 thanj you 😘

@IslaO i completely get it. Hands down waiting for the Ssr results was so hard. I don’t think either of us slept for days before the surgery and when he was in, it felt like the longest 40 minutes when he was in the surgery waiting. Something you never expect to happen to you as a couple either.
I have had horrendous morning/all day sickness but I’m just grateful for that because it makes me realise things are going wel?

@Ljp2022 congratulations on your good news, that's lovely to see 🥰
@lemons44 thank you I'll try to look that up, that's really helpful! I wanted to try and get a lot of tests via the gp before we go to the initial consultation, hoping it might speed things up. Sorry to hear you weren't able to see Mr ramsay in the end - did your SSR go OK?
I understand if my partner had 3 sperm in his sample he wouldn't actually be classed as azoospermia (so I'm sorry if I shouldn't be on this thread?! - its really hard on here to know the right ones to join but reading this one you all sounded so supportive and possibly going through similar treatments to what I thought we will also need?). I have been thinking that we would also need SSR but now not sure... I'm honestly so confused by all this, it's so new to us!!

@Ljp2022 congratulations! So pleased for you! Can I ask, was this your first transfer? If you’d rather not answer no problem.

@lemons44 he’s healing quite well after the TESE, they went into both testicles so he has been pretty uncomfortable bless him! Plus he is terrible at doing nothing and recovering. Bloods are being taken next week, I’ve asked for FSH, LH, Testosterone and Prolactin. Then the wait for the results. Really trying to stop overthinking and googling. @IslaO i know exactly how you feel, the constant anxiousness is horrible. I get into such a google spiral, sometimes it helps find useful information but a lot of the time I know it’s just adding to my anxious mind with things that haven’t happened and may never happen. ‘Don’t believe everything you think’ is a quote I heard recently and I think it’s a good one to try and hold onto.

@Sums20 it was. Our first fresh was cancelled because I got really bad OHSS so it was our first frozen transfer. Totally relate to those google spirals - been there and still there!

@Magix86 welcome! Sorry you find yourself going through this.

@Ljp2022 congratulations on your scan and seeing the heartbeat. Soo pleased for you!

@IslaO @lemons44 I'm ok thanks. Frustrated with my clinic as emailed 2 weeks ago for update on the last freeze and hadn't heard anything. DP called them last week and fobbed him off with excuses and said to wait another week. I've called again today and they didn't have a clue how many sperm where in the last freeze and didn't know what I needed to do next. Said they would look into it and get back to me but I won't hold my breath!
I'm contacting another local hospital to see if we can transfer there and if so how to I go about it. I'm fed up now. On what is already a highly anxious journey I don't the need the clinic making me more anxious by not knowing what they are doing!

Hope everyone else is ok x

@WhiskeyInTheJar33 I am so annoyed for you. This reminds me of how much me and my DH were messed around. It's so unfair on you ☹️

I found I was taken a bit more seriously when I mentioned complaining to HFEA: www.hfea.gov.uk

They are the body that monitor the quality of fertility treatment. Have a look at the website, I think there was a page about what service quality you should be entitled to, and be prepared to quote them to the hospital as it may get their bums into gear.

@lemons44 thanks. I will look at the HFEA website. Im going to give the clinic until Tuesday to contact me and then I will start complaining. I might contact pals too.

I contacted a few clinics about transferring and I will need GP to re-refer me 😞 I don't want to start at the bottom of the waiting list again. DP said we should just go private now but it's been him pushing to try and continue with the NHS since the start. I feel like we've come this far now for him to change his mind🤦🏻‍♀️ It's soo hard knowing what to do for the best.

My husband has azoospermia from a congenital condition we were unaware of for the past 7 years. We're in the US and have to find everything for IVF out of pocket ( 🙄 ) but are finally at the point in our life we can financially take this step. He had 2 semen analysis' a month apart to confirm zero sperm in his sample and then blood tests to confirm no cystic fibrosis or other genetic issues. He also has blood tests for hormones and because his FSH was good, his urologist seems to think this is a blockage issue, not a production problem, giving us a 90% positive outlook on finding semen during his TESE procedure.

Once we have those number, we will either be able to move forward with IVF for me as planned, or stop all together. After my egg retrieval, the next big question will be how his sperm interact with my eggs as neither have ever met each other before and don't know if they'll fertilize.

Unfortunately for people like us, there are a few extra steps in the way, but no one can ever say you didn't want your future child!

Side note to answer your last question. We have decided to not tell friends and family of our struggles since it's such a personal matter to us.

My brother in law and his wife are currently expecting and wouldn't want to rain on their parade or have family take attention away from them. Hopefully we'll have our 9 months in the spotlight soon!

Hey all,

An update from us, my husband had all his bloods, hormones and genetics done and all came back normal
His ultrasound also came back normal
He had his SSR last week and then said they found some sperm, HOWEVER...there wasnt alot and it was poor quality, it took the lab a while to find some alive and they did find some that were twitching and so have frozen 6 vials but have warned us that there may not be enough for a cycle so have told us get to get a donor ready as backup...
I dont know how to feel i feel anxious, upset, in limbo i guess, can anyone provide reassurance or helpful advice as i feel so confused

@HR01 oh bless you that’s a lot of information to take on. Have they done a thaw test yet? That should be enough to confirm if the sperm is suitable or not?

@Sleeter0893 welcome! Everyone here is really supportive each step of the way. It can be a really tough process but it sounds like you’ve had some positive news. I was told by my clinic that 90% of eggs fertilise with icsi and azoospermia, 60% of which make it to day 3 so I have my fingers crossed for you.

@WhiskeyInTheJar33 thats so frustrating for you. Absolutely mention going to HFEA (it does help things move forward).

@HR01 I’m in a kind of similar situation to you expect we don’t have my partners hormone results yet. Do you know what type of SSR he had? It’s usually a PESA or if that isn’t successful a TESE. There is also Micro Tese that is only done by urologists that specialize in male infertility. My partner had a TESE and we’ve been told the same, potentially enough for one ICSI cycle and recommended donor sperm as back up. Once we have the hormone results we will make an appointment with the urologist Gareth Brown (who can also do the Micro Tese procedure if needed) he’s based in South Wales but there are others in the UK. I think a minimum of 6 months is recommended between SSR. My partner had a vasectomy previously so that’s why we are investigating back to front, they were expecting to find a good amount in the SSR so the outcome has come as a bit of a shock for us. Hope that helps!

Hey!
Im not sure which he had...i presume the PESA, they took tissue from the testicle and epidydimis, i guess we were happy they found anything but confused at the same time! Hubby doesnt know if he wants to do a micro tese so we need to speak to the consultant and cross fingers and toes that there will be at least 1 sperm that is willing to fight lol! Always here if anyone wants to chat privately although dont know if you can private message lol!!
@Ljp2022 congratulations! You give us all hope ❤ wishing you all the happiness

@Ljp2022 thank you! I'm sorry we're all here but happy to be part of such a supportive group of women. Best wishes for everyone! We're waiting on our treatment plan so we can see costs and plan TESE in the next couple of weeks hopefully.
It's crazy, we've been trying for 7 years and the wait of a couple weeks is driving me mad xD

Hi everyone.

Welcome to all the newbies!

We are not at the sperm retrieval stage yet but I must say, it’s the most terrifying step. Im dreading it the most. I wonder, with all of you who have recently gone through this, can you share your knowledge on it?

Does the sperm retrieved have to be mobile/twitching to be usable?
Are fertilisation rates lower in surgically retrieved sperm than normal sperm?
should I look for a clinic with embryologists specialising in working with surgically retrieved sperm?

would love answers to these questions but I know we’re not doctors- just some sharing of experiences. It hit me today that we have yet to actually speak to a fertility doctor! Since our azoo diagnosis in august it has just been fertility nurses and a urologist. I’m just desperate to speak to a doctor now and get our next steps in a timeline.

updates on our side- Urologist suspected OH had no vas deferens. This was backed up with a positive CF carrier test. We just did an MRI and this confirmed the absence of a seminal vesicle too. This is often associated with absence of a kidney as well so need to look into this. I’m not a CF carrier but worry that if we have any boys in the future they will have the same issues as my OH. All hormonal bloods are normal so far so really hoping we have a high chance of success at SSR!

so worried about everything at the moment and just so not like my usual self. We have a big holiday booked for first two weeks in April. Do you girls think I’d be mad to push for a SSR before that? What’s the healing time in your experience? We want to hike and be very active on this holiday so don’t want to risk any immobility!

thank you everyone as usual for all of your help and listening ears xx

@IslaO we were told sperm retrieved from the testicles is very immobile because they are not developed (they might be more mobile from the epididymus as this is further along and they've had chance to mature a bit). Apparently this can make some embryologists panic as non-motile sperm can be mistaken for dead sperm. They need to wait a while once thawed then they can add chemicals to get some of them twitching. This is all what our consultant told us who did our micro tese (she works closely alongside Mr Ramsay so I do trust what she's said).

In my panic I also asked our embryologist if she can use immobile sperm. She did confirm if they cant find any twitchers they can use immobile sperm. I think from what I have read online the risk with using immotile sperm if you can't find any twitchers is that there can be a risk of using dead ones as both non motile and dead sperm are both just floating without moving, and so this can affect the fertilisation rate as they may accidentally inject some dead sperm.

My husband took about a month to heal from the micro tese but that is obviously the most invasive.

Sorry this is a rushed message as I'm currently out xx

@lemons44 thank you!! God every step of this journey is nail biting isn’t it? Injecting dead sperm is now my new fear! Wonder what it will be tomorrow?!

how are you doing overall? What stage are you guys at now? Have you had your egg retrieval? Im trying to scan back through threads to remember. Are you happier with new clinic now?

@WhiskeyInTheJar33 I'm annoyed for you! Did you complain? This journey is hard enough without these added complications.

We saw the urologist today and is it just our experience or do all these specialist have the same personalities? So egotistical and no personal skills!! He barely said hello to us before saying 'pull your pants down' to my husband 🤣🤦🏻‍♀️ didn't even say what he was doing. You have to laugh. He was going 100 miles an hour and we tried asking him the general timeline of everything and he said 'that's the problem with your generation, you want everything instantly, this isn't going to be instant.' I'd put him as the same age as my husband!! Anyway all very strange, he says he wants at least double digit eggs collected before he books in the mtese, is that normal?

Welcome newbies, I've been quietly following along in the background x

Welcome all the newbies!

@HR01 glad they found some sperm and fingers crossed its enough and works for you!

@pomdownunder1 I called the clinic yesterday afternoon to ask for yet another update as had not heard anything since Friday morning. They couldn't tell me any more. They sent yet another message to the funding team to ask them to contact me. I've told them they have until 4pm today to call me otherwise I will send complaint to PALS and HFEA. I will spend today typing the complaint ready to send later today. I'm just soo fed up with it all!

Your urologist doesn't seem helpful in rushing you along and not answering your concerns. I was under the impression they would do micro-tese first so that the sperm is ready and waiting for when they collect the eggs?

Well here's a turn up for the books.... the funding team finally called me back! 🙌

They said they are still waiting for us to update them on our weights as DP BMI was over 30 and I need my AMH repeating. I said that we emailed nearly 3 weeks ago to which she initially denied they received. She searched for it while on the phone to me and there it was! No apology! she just said well you still need your AMH testing. I said in that email you can see we have asked what the next steps, I'm not psychic and asked if I could have the blood test there. She said no and for me to go to my local hospital who referred me as they should repeat it, but they have discharged me. GP's can't apparently do it. I asked if I paid privately and sent them the results would this be ok and then she said I could have it there after saying no! omg this is so stressful! so I'm going tomorrow to have my AMH done and then fingers crossed they will apply for funding!

I still considering complaining, as they constantly contradict themselves and no apology for the delays. Not sure if its best to wait until my funding is approved and started treatment... don't want to be black listed! 😂

@IslaO I know exactly how you're feeling about being worried. I just want to get out over with to determine if there are any sperm! My husband has a normal testicle and then an under developed one. In the normal one, the vast deferens is very difficult to find but he has a normal vas in the smaller one that's likely not producing much of anything.. he had an undescended testes and it was surgically brought down when he was very young and his mom never thought he'd have an issue. His CF test came back negative and all hormones are ok so it seems like just a blockage from all the issues from birth. His urologist recommended him take a week off of work to recover his he's very active all day so I'd recommend doing it at least 2-4 weeks prior to your vacation so he's not completely miserable based on that.

@pomdownunder1 oh no! I'm sorry you're having such a rough go of it... our urologist is amazing and takes the time to talk to us any time he's sees us, remembers our names when we run into each other, and never blames us for rush or slowing things down. He definitely recommended having TESE done first (could be done same day but doesn't recommend) so that you know if there are enough sperm to even move forward with the ER. We're planning to do it 3 months before IVF/ICSI so we know it's even possible to do and to give my husband PLENTY of time to recover before I go through all my crap lol