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.

@IslaO what an amazing clutch and great fertilisation numbers! I actually read somewhere that around 15 eggs is considered the optimal 'goldilocks' number for collection, so a great sign. Fingers crossed for some great embryos 🤞🤞🤞
@Lily1994 good luck with Dr Pippa. The tests were all done super quickly so I think it's definitely worth going privately (completely agree waiting 8 weeks is too long) and she was really helpful. After researching all the specialists she was our top choice and we haven't been disappointed ❤️
@lemons44 hope your work is going well and have some relax time built in ahead of next schedule.
It's funny how familiar we get with things other people would have no idea on, I was going to quote my ICB policy too 😁
My husband's latest SA comment was "almost certainly contributing" which I thought was quite a sweet way of confirming the ICB threshold had been met 🤣🙈

@Sleeter0893
@lemons44

You are right, can't use surgical sperm retrieval for IUI. Bit confused as to why the clinic did not correct us, we filled in a lengthy application form outlining why we need treatment and what treatment we want, clearly stating he has retrograde ejaculation, and we want IUI. Spoke to them yesterday and they advised it will be ISCI we need, and they have sent us the correct price charts and it's a big price hike!

We could get IUI if we can find somewhere to extract sperm from the urine, but weirdly seems NHS is the only place that offer that.

If all goes to plan, we hope they can do the egg retrieval and sperm surgery in September, freeze the embryo's then implant after wedding and honeymoon in October. I don't want to be on any of the meds too close to the wedding in case it causes bad side effects, especially bloating as I am wearing a tight dress! - This is all just in my mind what I want, I have no idea what time scales they can work with and what's possible or how they decide who goes on the long or short protocol.

For NHS referral, my partner has an appointment with his surgeon in a few weeks (this was the surgeon who performed the surgery which caused the retrograde ejaculation - no blame there, just hoping with him being involved he will have more of an ability to push a referral).

GP stated that they would not refer until he has had appointments to confirm that he is infertile, think it's just box ticking exercises, though that referral could take months (already 4 months down the line and heard nothing). So, we are going to go ahead with a maximum of three rounds of private icsi, but my OH is going to ask for his consultant/surgeon to also put an NHS fertility referral in just in case private fails.

Hi all. I'm just hoping for some advice if possible. My partner and I have been ttc since January. He is a lot older than me so we did a home male fertility test and it came back abnormal. It was only £12 on Amazon so I'm not sure how reliable it is. Has anyone ever used one of these and got a bad result that turned out to be wrong? I don't have any children so I'm really hoping the test is wrong :(

@jadeyjade8 i would book in for a professional sperm analysis asap. Whether or not the test is reliable, it has given a less than optimal result and this should be investigated, even if it’s just for peace of mind!

Yes we are definitely going to see someone. Just waiting to see if I'm pregnant this month, I'm 7dpo at the minute. If I'm not we are going to go to a fertility clinic x

Hey everyone. I just stumbled across your posts and wow from reading through some of your journeys I feel like I have finally found a group that understands what me and my husband are going through. My husband has azoospermia and we have not been very supported by our GP. I did my own research and found out about SSR. After waiting nearly 9months for our NHS refferal and still not heard anything we have decided to go privately through another fertility clinic near to us and Dr Ramsey is one of the consultants there. Thank you for all sharing your journeys, it's so helpful in understanding the way through this very tricky path.

Hi Sammy

I think male factor infertility is something GPs are not very well trained in. Our gp is usually great, but for us it's like we had to really spell out why no ejaculation = no baby. And the GP didn't know if the referral had to be in my name or his! We went private too.

Heard a lot about this Mr Ramsey, hopefully you'll be in good hands!

I find it helpful to read other stories too and do lots of research

@wateringcanface thank you I definately think more training is needed for GPs especially when it come to male infertility. Ours told my husband he had no sperm whilst he was up a ladder at work (after telling us we couldn't have a face to face appointment to discuss results and then accusing us of missing the face to face appointment!) that he would have to adopt or get a sperm donor and that was the end of the conversation. It was just devastating and awful experience for us both. They then sent our refferal to the wrong place which delayed things even more. I did make a complaint but only because I really hope no one else has to go through the same thing but unfortunately it seems so many people are having similar experiences :( xx

Hi @Sammysquidge sorry you find yourself here too, it’s a horrible situation :( 9 months for a referral is way too long, I don’t know how referrals work as we haven’t been referred yet, but can you follow up on this? My husband will be doing his investigations privately but we’re hoping to
get nhs funding for ISCI/IVF because costs are too high

Hi @Lily1994 we contacted our GP and they said they tried to speed things along but were unable to. Through my own research I then found out the clinic they reffered us to have had their license suspended! I contacted the clinic about what this meant for us and they said they were hoping to have their license back soon and would let us know where we were on the waiting list as soon as their license was back but have yet to hear anything! I figured if we at least have some more investigations privately as you are doing at least it feels like things are moving forward and we might get some answers whilst we wait for the refferal. I also have fibroids and a bicornuate uterus. I want to change our refferal to the other clinic we have found but I don't know what this will mean for our position on the waiting list and if we will be back to the bottom of the list 😬 just feels like we have been let down through the whole process. Anyway sorry for the long posts. I wish you all the luck with your journey xx

Hi @Sammysquidge

So sorry you’re going through all of this. The pace of the process is so difficult. Has your husband been able to get to the bottom of why he has azoospermia? If not, some basic blood tests can be a good start. If his testosterone And FSH are within normal parameters it is likely obstructive and you have a very good chance of getting sperm in a retrieval. this is what we did- we were very focuse don getting to the bottom of why he had no sperm before we jumped into IVF.

@IslaO thank you this is useful to know as we don't yet know the cause of his azoospermia and the GP has just said to wait until he sees a urologist and didn't understand our need for wanting to know the cause. We have registered with the private clinic to have an initial consultation so I will ask about checking his bloods. The clinic need my bloods and another ultrasound anyway as the last ones were over a year ago now. Its the waiting and not knowing that we are finding so difficult at the moment

@Sleeter0893 how the hell did you get through the day 1-5 wait for updates? I am going up the walls here. We did have less than 70-80% fertilisation like you predicted and I’m just hoping some of our 9 little embryos push through. I am flitting between hope and despair and really didn’t imagine this part would be so hard!

For anyone in the same situation I just wanted to say I have just had confirmation from my local ICB that if we privately fund the surgical sperm retrieval then it will not affect the possibility of us then having ICSI funded through the NHS with that sperm. Obviously I can't guarantee this would be the case for everyone but it's always worth contacting your local ICB to see if this is a possibility if you cannot go fully funded privately. It means we have options which in this journey sometimes you feel like you have a lack of options!! It means we can try and understand a bit more about my husbands azoospermia whilst we wait for our NHS referral. It makes us feel like we are not just sitting around waiting endlessly.

@IslaO I hope the wait goes quickly for you to ease your despair. These feelings are totally understandable. There's nothing I can say to make it any easier for you but wishing you all the luck with your embryos

@Sammysquidge that's useful to know, thank you! The waiting is horrible, we are in the same position but hoping it will be worth it in the end.
@IslaO fingers crossed for a good result.

I am freaking out a bit as the third genetic test results are in, but they haven't sent them over (they sent the other two which were fine) so am now expecting the worst. Any insights with this much appreciated (maybe it's weird to send the first tests anyway?!).

@IslaO I was dealing with OHSS which helped the anxiety for the first couple days because I was taking care of myself... day 6 was the worst!!!! I normally got results pretty early in the day, but had to reach out after about 5 hours of not hearing from them for a status. I didn't know heading until my doctor followed up with me.... a week later!! During the IVF process, I started making a baby blanket. We have a new nephew and a friend who's welcoming their 4th (accidental) child that I can give to if this never pans out. What day are your embryos on now?

@TheFanciestPants I hope the 3rd wait doesn't last too long!! You never know what's causing delays with your doctor. Was in the ER last night for an ocular migraine which was new to me and scary as crap.. doctor took forever to tell me my CAT scan was fine because he had to sit with a suicidal patient.. I praise doctors and nurses for everything they do and deal with.. especially because I can be a little crazy too 😜

You will be ok. This could even be an oversight! Which one did they withhold?

Thanks, it's the one that isn't CF or microdeletions (hopefully you know which one I mean). I think it's the super detailed karyotype one.
Sorry I probably sound pathetic but I am so anxious about everything and I am now too scared to ask. 😵‍💫

@Sleeter0893 how are you doing post OHSS now? That’s a great idea on keeping busy.. I am not as talented or skilled so I’ve just been trying to get out on walks and watch shit TV like love island and MAFS 😂

Day 5 update from me- 3 embryos frozen and a few more being monitored for tomorrow.

i had convinced myself that TESE sperm wouldn’t work as we had no idea of quality so
i am really really relieved. The numbers element of IVF is so strange though- I was initially relieved and then I started to think ‘oh but I’d love 2 more to freeze tomorrow’- greed sets in as we are so desperate for as many back up options as possible. I was absolutely not prepared for the number drop in all of this either- I can see why this stage is called the hunger games! We went from 28 follicles-15 retrieved-14 mature- 9 fertilised- 3 day 5 blastocysts and potentially one or two day 6s but no guarantee. Wild stuff and not for the faint hearted!

@IslaO I LOVE MAFS.. torture my DH with it all the time ;) those numbers look great though! We had no 2 day 5 blasts that they wanted to develop a little more so all 4 of ours are day 6 frozen, so have hope! It is truly crazy the drop.
I'm great post OHSS. On bc now and a call with our office Wednesday to get a set date for the transfer! Hopefully by my 30th, I'll be pregnant!

@IslaO thats amazing news!!! 3 lil embryos waiting for you and hopefully a couple more to join them! Absolutely know what you mean about wanting more, we were so so lucky but every time one drops you think why has that happened and it feels like it’s going wrong but it isn’t that’s still really good. You’ve done so amazingly getting to this point and I really really hope the hardest days are behind you both ❤️

@Carla2601 thank you so much! You are always on hand to provide azoospermia inspiration and hope!! I really really hope the worst of it is over but I’m learning that every bloody part of this is mentally excruciating 😂😂😂

@Sleeter0893 let us know how the call for the FET goes! I can’t believe you’ve gone through all of this before you’re even 30!

@IslaO that's amazing news 👏, 🤞 for good outcomes for those you are still waiting on.
We should find out what is happening on Wednesday afternoon. Will try not to fall down any rabbit holes before then!

@IslaO it really is but you’re doing it!! Think how far you’ve come and how many obstacles you’ve got over to get here. Tonight I hope you’re both managing to celebrate getting to three frozen embryos. Good luck for tomorrow, hoping for more good news for you. Do you know when your transfer might be?