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.

We are literally in the exact same position, except my DH has had his ultrasound scan already.

Our consultant said he is 'cautiously positive' it is a blockage but can't be certain until we have the retrieval op. The other possibility would be that it is a problem with the testicles just not making sperm.. our consultant described this as 'maturation arrest'. So sounds like the same as you have been told.

We have our next consultant appointment on Thursday and will hopefully book the retrieval then. So far we have paid for private tests so I am also now trying to push my GP for an NHS referral. We can afford to do a private semen extraction but then would need the NHS for IVF.

It's so hard waiting isn't it? It's been about 9 weeks now since our first semen analysis showed azoospermia and it's just been awful.

Oh sorry and we are based in Essex @Ljp2022 how about u?

@Ljp2022 do you have a date for your sperm retrieval yet? You’re right it’s the waiting that’s hard! Had news today that ultrasound will be next week which is good.
we are in Wiltshire. We only just had our letter through today to say that we have been referred for nhs but that it might be 12 weeks until our initial telephone appointment.
we are kind of at the stage now where we are accepting that we aren’t going to have the ‘normal’ journey. Now is just a waiting game isn’t it!

Hi @Ljp2022 how did the ultrasound go?

We have been offered an appointment for surgical sperm extraction on 15th September (with a private clinic) but I really feel like this is too long to wait.

Are you going for private extraction of waiting for NHS?

Just giving this thread a bump as I've seen a few other threads recently on azoospermia.

Not much to update on here. We have our SSR in just under two weeks so just waiting really.

@lemons44 hey! I’m so sorry things have just been so busy here.
Since we last spoke, the ultrasound showed that my husband was missing a small duct. They said this could not be solved with microsurgery therefore booked us in for sperm retrieval 10 days ago. They said everything pointed towards physical but still gave us a 50/50 chance.
Thankfully the SSR was successful! They found loads of sperm and some even had a slight wiggle! They explained that sperm in the testes is not mature and doesn’t have much of a wiggly tail. They said it’s at high risk of dying when they freeze it because of this so that was the next step. This week they thawed a small amount of frozen sperm to test it and it lived!
I started my cycle this week and am due to start injections for IVF around day 21 of my cycle. A long road ahead but feel like we have been so lucky with the best possible news so far.
they’ve just said that if I get covid, they will have to stop IVF and make sure I’m 7 weeks free before they can proceed with egg collection. I’m now being so cautious but having a wedding in 12 days and the groom has just tested positive for covid - terrified!
Not long now until your SSR! Sending lots of good luck your way 🤞🏻🤞🏻🤞🏻
sorry for the essay!

@Ljp2022 this is such amazing news!! Thank you for sharing as it has given me some much needed hope!

I never knew that about the wiggly tails. I did read that something like 50% of sperm will die when thawed but with ICSI that doesn't matter too much as they are picking a single sperm.

Do you mind me asking what procedure your OH a had done? Was it TESA?

One week tomorrow and we will be having ours. Honestly it is all I can think about. Thank you for the good luck. I will definitely update you.

X

@lemons44 i really feel for you. The wait is the longest and hardest part hands down. The rest of the journey isn’t easy but waiting for answers is so hard.

They planned for all 3 types of surgery but were successful on the initial incision which I think was TESE.

got my fingers crossed for you!

@lemons44 sending positive thoughts your way. Here if you need a chat.

@Ljp2022 Did they do a re-test oh was told this, after lots of research stopped going in the hot tub and Sauna, not hot baths or showers. Reduced caffeine, 3 months later retest completely different results we had IVF as I don't ovulate and they couldn't perform a HSG and I'm 12 weeks pregnant after the 2nd full cycle.

Cautiously Optimistic as 12 week scan is next week x

@PMAmostofthetime that’s amazing news congratulations! X

Thanks for checking in @Ljp2022

Honestly we had SUCH a nightmare. So we waited 7 weeks for our appointment, which I thought was a long wait anyway considering this is private.

I was literally counting down the days and then hours until we would finally have an answer. And then the DAY BEFORE the SSR, they rang us and cancelled. I honestly spent the entire afternoon in floods of tears ☹️

They basically cancelled because the anaesthetist refused to do it until he saw DH's NHS notes. DH has a relatively mild and common medical condition that could be affected by anaesthetic and so they refused to do it until they saw his notes. This is obviously fair enough but we couldn't believe this hadn't been picked up in the 7 weeks prior! They'd known about this condition since we first signed up to the clinic 5 months before and during the screening appointment that was 2 weeks before.

Anyway we finally got the NHS Notes yesterday and I am ringing the clinic on Monday to rebook. They did say they would get us in ASAP once we have the notes. I hope they do.

How are you doing? Have you started stims?

@lemons44 what an absoloute nightmare! That’s really poor practice. Can completely understand their wish to read medical notes before hand but they should only take 24 hours to pull from medical records, especially when they were very aware of his past medical history. I’m sorry to hear that it must be so frustrating! Fingers crossed they’ll get you booked in quickly!
Started down regulation injections this Monday, likely to have egg retrieval if all goes well in November - everything takes so long.

Hi all,
This is my first post in this site but felt i had to reach out for support
My hubby (35) and I (33) have been trying for a baby for 1 year and decided to get tested for any issues, mine have come back completely fine but unfortunately hubby has come back with 0 sperm on first test. He has to repeat 2 x more before we can progress further but safe to say we are gutted,
Just want to get some reassurance really for a positive outcome and any advice you can give, he has had an ultrasound which all looks normal. We are extrememly fortunate that we are able to go private and will be lookig for a clinic for the next part of the journey but what are the next steps? Grateful for tips and advice ❤

Hi @HR01 I am so sorry you've found yourself in this situation. It really is so incredibly tough ☹️

There can be quite a few reasons for azoospermia and not all of them mean it's the end of the road. It's just annoying having to have multiple tests to gradually eliminate possible causes!

The first thing I would do is get him booked in with the GP for hormone blood tests as these can be turned around very quickly and will help you to understand if the issue is hormonal.

The best doctor for azoospermia is Dr Ramsay. He is in London, I'm not sure how close you are to him?

jonathanramsay.co.uk

@HR01 im sorry to hear you’re going through the same thing, it came be so incredibly tough. My main advice is to take it one step at a time and just keep talking to each other.
I would suggest that if you are able to go private, find your local fertility centre. Going through Gp and NhS is great but it’s an incredibly long wait. We went to our local fertility centre privately in May this year, found out about my DHs infertility and started testing. They need to find out whether it’s genetic, hormonal or physical and this can take a fairly long time to do, even privately.
In the end, they will need to do a surgical sperm retrieval to determine if there is sperm.
Privately, we had our initial assessment end of May, had all tests done by end of July, sperm retrieval in August and I started IVF in September. There are options moving forward but it just might mean adjusting your expectations. Sending best wishes, here for any support or questions you have x

Thank you both so much, really appreciate your messages.
We are based in Essex so quite close to London however we are looking at local clinics.
The main thing we need to get right now is his blood test although the consultant he is seeing (urology) is not very helpful with this
We have discussed both options including the possible donor route and are going to try all options we can
Thank you both so much fingers crossed for all 🤞

@HR01 goos luck! Here if you need anything x

How are you finding down reg @Ljp2022 ? Are you having many side effects?

Not much to update on here. Our clinic is still messing us around. DH won't be having his medical notes reviewed until a specific doctor comes back from annual leave of 14th! So earliest we can have SSR is week commencing 17th October. Really fed up and think if we do find sperm we might choose a different clinic to have IVF with. By the time we will have it it would have been more than 3 months since we booked. Considering this is private it's so bad.

@HR01 hope you're feeling ok. Did you manage to book a blood test?
I am also in Essex 😊 we booked the day off to see Dr Ramsay and saw him at his Beaconsfield clinic. He really is lovely but had a long waiting time for an appointment. Think about 4-6 weeks.

@lemons44 hello lovely, not yet, hubby has done his 2nd sperm sample so wer going to try and see the consultant now and see if he we book a blood test for him, my side of things was done so quickly: consultation, ultrasound, blood test and results all within a fortnight and yet hubbys has been dragged on for a couple of months now i feel so bad for him,
Oh really? We are looking at a couple of clinics in essex for the fertility treatment itself, i keep hearing about Dr Ramsay and sorry for being naive but what does he do differently to anyone else?
Iv got through the shocked phase now but every now and then that sadness hits me do you guys still get that?

@lemons44 down regulation was fine until this week and I’ve just been tearful all of the time and my stomach has started to bruise. Otherwise I think I’ve gotten off likely! I don’t blame you that sounds so frustrating and definitely isn’t best practice. You can’t risk being messed around if you do go on for ivf. Hope the next few weeks go fast for you x

@HR01 for some reason men do take longer for testing. I think it’s because they are more specific and specialist bloods, etc. all in all it took 2-3 months for my DH to have all of his assessments, even privately. What you’re feeling is completely normal. We were both very upset for a long time. We then have waves of being fine and managing it well, accepting it’s just a different journey for us and then waves of unexpected sadness. I think it’s completely normal as every stage is a hurdle and it is very much a rollercoaster. You aren’t alone xx

@Ljp2022 thank you, its a relief speaking to other women in the same position as it seems like a taboo/not talked about subject and unfortunately alot of people can never understand xx

If your husband has non obstuctive azoospermia, success rates of sperm retrievals are much higher with a microTESE. He needs to be seen by a urologist subspecialising in andrology. There are only a few around London who do this in alphabetical order as all are good

1. Suks Minhas
2. Pippa Sangster
3. Maj Shabbir
4. Tet Yap

(a few other andrologists too, but not their primary interest)

Outside London- look at the BAUS website

Jonathan Ramsey is also a specialist in male infertility doing mTESE as discussed in previous posts!