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.

@lemons44 i know! It makes me feel happy to know that so many people out there have got some sort of support from this. I honestly don’t mind, whatever you guys prefer but I will still follow your journeys 💕

Oh @Ljp2022 please do join us! Any movement on your end yet? How are you feeling? Bet you never thought you’d get to this stage?

@lemons44 where are you at at the moment? Are you taking a break until later this year or have I remembered incorrectly?

I had my HCG results yesterday and at 13dpt I was at 779 so I’m kind of finally beginning to believe the tests. But I just can’t fully relax until my first scan on 17th (but I’ll then move on to worrying about something else after that I’m sure). I think this has been such a battle that my brain is in complete self protection mode. A colleague was excitedly talking about being 6.5 weeks pregnant this week and I thought ‘what a luxury to be so relaxed and blissfully ignorant’. That’s not how we roll in the azoo club 😂

@Sleeter0893 congratulations!!! Soo happy for you and great to have another bfp in the group!

@lemons44 yes I remember when there was just a few us here at the start. The azoo club is not where I'd choose to be but so glad I've found you all. Everyone is soo supportive and couldn't have done this journey without you!
Was going to offer setting up a new thread too as saw it was close to getting full.

@IslaO that's good news about your hcg. I was listening to a podcast the other day and it's a never ending journey of worry especially those who go through IVF... worried about finding sperm, egg collection, fertilisation, how many make it to blasts, the 2ww, OTD, the viability scan, the 12 week scan, the 20 week scan...
will keep everything crossed for the 17th, keep us updated.

@Ljp2022 how are you doing? has baby made an arrival yet? You definitely should join us - our first success story!

@IslaO and @WhiskeyInTheJar33 no movement here yet, he’s clearly far too comfy to make an arrival. I can only fit into PJs and my husbands tops so fingers crossed it won’t be long!

@Sleeter0893 congratulations!

@IslaO amazing HCG levels!

I still haven't actually ovulated... I was hoping to go on holiday for next week but have to be back for a scan on Wednesday. I wanted to say thanks to all of you for sharing your less than optimal IVF cycles (as we are all very obvious MFI it does bring it home as to how basic fertility treatment is!). Some of the doctors have definitely tried to make me feel bad (my AMH is a bit low but my AFC is median for my age and there are no other issues). Maybe it's because they are used to unexplained infertility and society tends to blame women and the doctors are no different?!
Anyway, we have a doctor who is being more positive so hopeful our next cycle will be better and going to take my trigger shot later so 🤞🤞🤞

Wow, I haven't clicked on here in a while and now there's 2 bfps!! Congratulations to you @Sleeter0893 @IslaO, so happy for you both and hope it's smooth sailing from here on.

I'll be starting my day 1 next week with a timed tesa, nervous they won't find anything but hoping for the best 🤞🏻 unexpectedly the private clinic we're at has said we can have this round for free, not sure why as I think it's pretty unheard of and makes me think they did something wrong with others rounds 🤷🏻‍♀️

Do you know when you'll begin again @lemons44?

Welcome newbies! It's a great community x

Hi @pomdownunder1 how are you feeling about it?

Our next steps are still TBC.. I am really weighing up our options, including whether to stay where we are or change clinics.

I spoke to the embryologists today and they couldn't really give many answers about the sperm quality just that there was occasional twitchers and the fertilisation and fact we had good quality day 3 shows the sperm must have been of reasonably good quality. They can't rule out the fact my eggs are playing a part too. Really they said we now need to let all embryos go to day 5 to see if any make it, which i agree with.

However I have started to consider whether we 'chuck more money at it' and go to a better clinic. I think I am going to book an appointment with ARGC. I know they deal with more complex cases and it looks like they might have more techniques in their embryology lab.

@TheFanciestPants did you have a consultation with ARGC? Do you know what their IVF wait list is like? I know it's a lot more expensive. I'm thinking of starting another thread to ask other people how much it cost them in the end. We are lucky that we have some inheritance but I need to understand roughly how much it will be.
I understand they do daily blood tests and scans so I'd probably need a week or two off work as i live about 1hr30 away and it would be a bit much juggling I think.

Sorry if I am missing messages I've been super rubbish at reading through them lately xx

I'm now really torn about ARGC... I've been reading lots of threads on them and I think they are primarily good for women with difficulties conceiving and having miscarriages. I don't know where would be the best clinic for male factor.. I just want a clinic who are super good with dealing with sperm.

@lemons44 I'm so sorry you're having this problem right now. I doubted our clinic on the beginning with issues even getting in touch with someone to schedule and found that it really helped talking to another clinic, even to know someone was listening and would be a good back up in case I decided to call it quits. Just remember to trust your gut and if something doesn't feel right, don't be afraid to be your own advocate.

@WhiskeyInTheJar33 @TheFanciestPants @pomdownunder1
Thank you all!! My primary care confirmed everything yesterday with a urine test and my fertility clinic sounds super hopeful! HCG beta is still Oct 3rd, so only 5 days left to see where that comes out.
@pomdownunder1 wishing you the best of luck and definitely a successful Tesa!!

@lemons44 so I asked Dr Pippa this exact question and the list was CRGH, ARGC or King's. She was less keen on ARGC as said it's an extra full time job for the woman but I'd rather do that then go through this again!

As we got our NHS cycle at King's we went there first. And will do our 'goodwill' cycle too but I am not super hopeful. We will have our ARGC appointment in mid October as we wanted to share our notes from King's (can take 28 days to share with us). There was around a 3 week wait for a consultation and before you start IVF there's a less intensive monitoring cycle.

ARGC have around 80% of their patients with failed IVF cycles elsewhere. I am probably biased as one of my best friends had such great experiences with ARGC (twins after 14 failed cycles!) and they are generally seen as the clinic of last resort.
So the advertised prices are pretty transparent and I think prices range hugely, I have seen numbers between £12k and £30k (this does seem to be for particularly tricky cases).

Hope that helps and if you want me to ask my friend I will 🤓

Thanks for the message @TheFanciestPants I am going to look into CRGH and Kings today.

Honestly from what I have read about ARGC it has scared me senseless!! I find normal IVF quite overwhelming without doing it boot camp style. I am still bearing it in mind but going to explore the other options too. That's so so amazing it worked for your friend! Do you mind me asking what her issue was? Apparently their standard method is something to do with immune meds?

I also read that apparently they favour early transfers (2 or 3 day transfers if there's not many embryos as they believe they do better in the body). This is really interesting to me as my clinic believe the same. Really we need to try to get to 5 day transfer next to know whether this is something we are capable of achieving as so far we have only had 3 day transfers and none of our others made it to day 5.

Do you live in London then? I live in Essex so all the clinics are a bit of a travel for me but certainly doable as I often have to commute into London for work meetings.

Thanks @Sleeter0893 💗 it's hard as I do actually really, really like my clinic. Especially the embryologists who are really rooting for us. I'm still half tempted to give them a few more rounds before moving. It's so hard to decide! So happy things are looking positive for you 💗

xx

Hi ladies, hope you're all well. @lemons44 let us know what you end up deciding clinic wise.

Can I ask for those of you whose partners did the follow up tests with GP, does the GP do all the tests like the hormones and genetics ones too? Or do they refer to a specialist?

My husband has his appt today with GP so we just wanted to make sure we are asking all the right Qs. Thank you x

@2022ttc you may have already had your appointment by now but my partners GP just arranged basic hormone (just testosterone), initial semen analysis and ultrasound scan. They referred to a urologists which was a 9 month wait so we saw mr Ramsey privately who arranged the more specific tests: y-micro deletion, karyotype, genetics, in-depth semen analysis etc

@2022ttc my husband just got SA and testosterone check from GP. We paid privately for everything else and saw Dr Pippa who is a specialist to discuss initially and then after results.

@Lily1994 hope you are doing ok. Did you get the tests back? 🤞all is well.

@lemons44 she had quite a few things going on which no one apart from ARGC tested for, to do with lining/implantation and immunes. Long message coming up and yes I am in central-ish London so more convenient than for most, hello Essex neighbour 😀

On the immunes point, they certainly suggest testing everyone but as you'd expect not everyone needs treatment. As it's a 'clinic of last resort' the cohort of patients is quite skewed (more than 80% of patients have had failed cycles elsewhere and average age is around 40 I think) so quite a few people do have immune treatment but not everyone.

My friend did have immune treatment as her immune system was over active (not sure of technical term) which makes loads of sense as she never gets sick!

For her round there after getting only a couple of embryos to transfer in each of the previous cycles, they got 13 eggs and 10 embryos. She had them PGT-A tested, 5 were normal and 2 FETs were put back which are now her amazing miracle twins (can you see why I am so biased ❤️).

ARGC aren't focused on genetic testing and do prefer fresh transfers but they did support her in following that process so I am sure they would support you in day 5 embryos (or whatever you choose).

I think a key difference is CRGH are more keen on genetic testing and FETs in general. They include PGT-A tested embryo stats on their website too. They have an online information evening every couple of weeks so might be worth checking out.

I'm with King's right now so if you have any questions, let me know. Things haven't been smooth sailing but they are very responsive and the sperm side for us has been much better than for Guy's and Tommies (where we went for tests initially). They also have the better embryology technology similar to the two more expensive clinics as the embryologist has spoken to my husband about AI usage etc.

I hope this is helpful. I have my fingers crossed for you xxx

Hi everyone.

I posted a few months ago but my priorities temporarily changed to wedding planning!

Azoospermina as far as we know isn't the issue, it's retrograde ejaculation following surgery which caused some damage to that area.

He had a urology appointment the other day to give a sample, he was very irritated by the process, he had to explain every step of the way that he could not produce a normal sample, the sample has to be taken from his urine (as with retrograde ejaculation it goes back into bladder rather than out).

Anyway results came back saying they found no sperm. We have done some research, apparently he was meant to have been given something prior to neutralise ph in urine, and the sample was meant to be mixed with another chemical to further neutralise urine. And then sample is meant to be dealt with really quickly as sperm can't survive in urine very long. The first was definitely not done, and he very much doubts the second two were. So there's a chance the sperm died before sample was tested.

The letter also pretty much just said "no sperm in sample. Contact andrology"

And now we have been stuck in a loop as abdrology or nhs Fertility won't take self referrals, but gp says urologist should do it, urologist says its gp. Gp said they need an appointment (why?) But then said they have no appointments 😒.

He's now getting anxious, we initially believed his sperm production would be fine, but it was just accessing the sperm that would be an issue. Most articles say in retrograde you can successfully get sperm from urine, and as that didn't happen for him, he's now paranoid he's not producing sperm at all.

We know we need the surgical sperm extraction, has anyone else on here had that?

I've read stories of people waiting up to a year on the NHS for that procedure.

We do have the money for private, but it wouldn't be something that we could comfortably afford. We really resent the thought of being out of pocket as well, as it was an nhs surgery that caused it, and in terms of aftercare for helping with what is a major complication (infertility,) of a surgery (that was listed as rare in 0.1% of cases) they have been really unhelpful.

Thinking of trying to book thr surgical sperm retrieval privately and if successful trying to get isci on nhs.

Thoughts?

So disappointing, early this year we were discussing our excitement of wedding then ttc.

@wateringcanface sorry to hear of your frustration. We also found out about azoospermia in the midst of wedding planning and we ended up cancelling to focus on this. It’s a lot to mentally juggle so sending lots of love.

I can’t help with the NHS and finding side of things as I’m not British but with retrograde ejaculation, I believe sperm production is unaffected so a simple Tese is should work for you guys. That’s what we did with my OH as he has no vas deferens. It was a quick procedure and so much cheaper/widely available than a Mtese would have been here. Hopefully some of the UK based ladies can help you with your referral questions but just wanted to flag up that it could be more of a simple/widely available process to go via a TESE than through the urine.

Thank you isla.

I hope you managed to get / or are in process of getting both baby and wedding plans achieved!

My concern is that with retrograde is that when you look it up on fertility treatment websites it says "don't be concerned, we can simply take the sperm from the urine"...or words to that effect. So we are a little bit worried that nothing was found in his urine.

I've started looking into TESE privately. As I'm not holding out too much hope for the nhs to get it sorted any time soon.

Read lots on here about Mr Ramsey, we are on the opposite side of the country so would rather go closer to home but will keep him in mind.

We are considering putting in a complaint to PALs, the NHS has really just gone 'oops we made you infertile, not our problem to sort out". We don't blame them for the actual infertility, the surgery was done by someone top in his field, it was just unfortunate he got one of the rare complications so we are not accusing malpractice or negligence. We just feel the aftercare for someone who stated numerous times he wants a family soon who has been made infertile is lacking.

Hello,

I hope you are all well,

My OH was diagnosed with Azoospermia and we have just had our blood tests and genetic test results back which indicate he has low testosterone but high LH and FSH. He has been recommended to have the MTese done to see if there are any sperm there.

I was just wondering if anyone has had a successful result with the MTese with the same issues? I have been reading this forum for a long time now but we have just been sat waiting which I why I’ve never messaged until now.

I am so grateful to you all for sharing your lived experiences of this and definitely feels less isolating.

Hello @HoustG hope you're well. I'm a relatively new member of this forum so can't add much, as we received our Azoospermia diagnosis 2 weeks and my husband is having his hormone tests this week. I'm sure you will get lots of responses from the lovely helpful ladies on here. Wishing you all the best x

@HoustG My husband had the same results from his blood tests. He had 6 vials of sperm retrieved after 1 mTESE.

Just an update after being missing from our pregnancy test!
Had our HCG beta tests this week and 1st test was 1592, second was 3061! We're going for an ultrasound on the 20th to hear the heartbeat and will be graduating from our fertility clinic at that appointment.

Hope everyone else is doing well and hanging in there :)

@Sleeter0893 thank you so much for your reply it has given up some hope for what’s yet to come!
Congratulations on your pregnancy! I wish you and your partner well 😊

@HoustG so sorry you find yourself here, but it's way better being here than alone!
@Sleeter0893 that's wonderful news, congratulations!

So I started down regging last week as my follicles haven't ovulated/disintegrated (the two that grew during my failed cycle) and after 8 days of Buserelin they are finally starting to disintegrate (bleed is around 20 days late at this time 😵‍💫). So hoping to start stims on Monday. So good to finally be making progress.

@HoustG @TheFanciestPants Thank you for the well wishes!

@TheFanciestPants I'm so glad you're getting along as well. Fingers crossed for a successful stim cycle soon!!

@IslaO How are you feeling lately? I keep getting nervous waiting for my first ultrasound that this isn't actually real lol