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.

Amazing news @IslaO !! To get 3 for freezing is just incredible news!

@TheFanciestPants sorry you're feeling worried. When is your next appointment?

xxxx

@lemons44 thank you for checking in, next appointment is tomorrow. I am sure it is the same for all of us, that some days it all feels too much. I know it's silly to freak out about not being sent the results directly, but they sent the other ones and I am realistically too scared to ask why these haven't been sent.
I am so so worried it won't ever happen for us, I just spend my time trying not to cry and to be brave for my husband (who understandably is also struggling).
I hope all is well with you ❤️xxx

My DH was referred for an appointment at Guys & St Thomas, the earliest appt was in 3 months time! We are planning to do all my DHs tests privately in the meantime. Does anyone know of Guys would then apply for the NHS funding for the sperm extraction and the IVF? We have different GPs and his GP referred him but my GP hasnt referred me. do I also need to be referred (sorry my gp is so unhelpful)

@Lily1994 I understand fertility referrals need to be in your name (ours did!) so I'd suggest getting in the queue while investigations are ongoing.
I think the fertility and extraction funding is separate as I think we are the same ICB so here is the info https://www.southwestlondon.icb.nhs.uk/publications/fertility-advice-for-patients/#:~:text=Who%20can%20get%20fertility%20treatment,of%20services%20for%20local%20patients.

@TheFanciestPants thanks, did you find out about your results?

Hi girls, I have to update you. Dh had his mtese today. Unbelievably they found sperm!! Still can't believe it. No idea of the quality yet, the lab said they're currently non-motile so they'll call tomorrow to see if they do anything overnight. Am I right in thinking they can still use non-motile?

Amazing news @pomdownunder1 !!
Yes sperm from micro tese is non motile and the embryologists can add chemicals to make some of the sperm 'twitch'. They then try to use the twitchy ones for ICSI.

Good luck at your appointment @TheFanciestPants
Xx

@pomdownunder1 yes!!!!! Oh my god amazing! I am so happy for you. I second what @lemons44 said- they aren’t mature so are usually non motile so they add a solution that is described as caffeine for sperm and it sorts the love from the dead and you start to see twitchers. We didn’t get a normal sperm analysis on ours as there is generally too little sperm to do a regular analysis of mobility, motility etc. instead they told us how many vials and what percentage of twitchers they found per vial. Relax and take today as a huge win!

on my side we got one more day 6 embryo so we have 4 in the freezer. Going to take a month off, go to Italy to drink wine and eat pizza and go for a FET after my next period arrives!

@pomdownunder1 that's amazing news!!! So happy for you and DH. I know that's a massive relief :D

@IslaO congratulations on the 4 embabies!!! Enjoy Italy and time away from stress and baby making... hopefully we'll all have some really good news in a few months!

Updated news for me, our transfer date is scheduled for September 19th. Our plan is not doing any transfers for July so everything in August and September is all filled up.. pretty bummed at having to wait even longer than planned after we were supposed to have a transfer in June, but maybe it's for a reason. At least we can tell everyone at Christmas we're expecting if everything goes well!

@lemons44 thanks so much for the good wishes and thinking of me ❤️. It turned out it was actually an oversight (as was so politely advised)and everything isn't a horrible disaster! Dr P advised to start cryopreservation in case the sperm situation gets worse so we should hopefully get funding and be able to do that asap.
Sorry, I have been in a real tizz the last few days, when do you start your next cycle?
Thanks @Lily1994 , apparently with all the strikes NHS appointments for andrology are now booking into next year so I think if you can afford it then private is a good investment.
@pomdownunder1 amazing news! Congrats 👏
@Sleeter0893 it will be September before you know it 🥳

@TheFanciestPants that's good news right? That Dr P feels there's enough to start freezing it? Did she know why the levels are low?

I have started northesterone tablets to manipulate my cycle and will likely start stims around 9th August.

Amazing news that you got another one @IslaO ! Your plan sounds wonderful.

@pomdownunder1 I second what @IslaO said in that they can't do a normal analysis. Even if none twitch though your clinic should be able to use the immotile ones - there is just a higher risk they may accidentally inject a dead sperm instead of a live immotile one I believe. The best thing you can do is talk to the embryologists if you can, rather than the doctor. They are scientists and should be experts at using sperm for ICSI.

@Sleeter0893 hopefully September comes around quickly for you! Xx

@IslaO @Sleeter0893 just thinking it would be super useful to know if your embryologists used all twitching sperm or some immotile ones too? Our embryologists used only twitching but we only had 3 eggs so only needed to find 3 twitchers. I have no idea if we get more eggs next time if they may need to use some non twitchers too xx

@lemons44 thank you for checking in 👋! Yeah it is good news and given where we are and where we could have been, it is a massive relief! Dr P was really honest (she's such a great doctor!) and said she doesn't know what is going on and that in all likelihood the situation will deteriorate because that's how these things normally go. So we should preserve where we are and there are some good sperm to use and she's going to help us navigate the NHS admin of fertility preservation (which is really kind as it's been really rough so far).
That's really great you have a date to aim for, I know it's scary to think about if the sperm will be good enough, but it seems from what Dr P said yesterday that it all works out well more often than not and they are often positively surprised with results. I hope that helps, no-one can guarantee anything, but you really do have a very good chance.
@pomdownunder1 so this might be helpful, we asked a lot of similar questions yesterday and were told that issues with sperm production generally mean worse parameters (strong correlation) but that the embryologists are very experienced in this and that although fertilisation rates are lower than average (with 'normal' sperm parameters), there are still very good chances with surgically extracted or poor samples🤞

@TheFanciestPants your doctor sounds lovely. I'm glad you've got someone on your side .

@IslaO happy holidaying! I'm so jealous, sounds amazing. @lemons44 glad you have a date, that will come around in no time.

Thanks all for the advice and wishes, god it's such a rollercoaster isn't it. We found out that they found enough sperm for all 18 eggs so actually started to feel positive and then they rang back to say 13 of my eggs didn't make the thaw. We're left with 5. Trying not to be negative but I just can't see there being any day 5s 😭

I'm so sorry for the rollercoaster @pomdownunder1 all I will say is try to stay positive. I read this thread the other day and she got 3 embryos from only 4 follicles:

Only 4 follicles. Looking for success stories. www.mumsnet.com/Talk/infertility/4846167-only-4-follicles-looking-for-success-stories

Hopefully u get some day 5s but also talk to your clinic about their day 3 transfer process. Because we only had 2 embryos at day 3, they recommended transferring the best one as there's an argument that the environment in our uterus is better than a lab. I read LOADS of day 3 transfer success stories when we had ours and I know mine didn't work but so many people do have success.

Hopefully you get day 5 embryos but just wanted to say there's options too 💗

I also read a story on here where she only got 3 eggs and all 3 ended up day 5 embryos.

You have my sympathy though as starting with 3 eggs on my last round, I know it's so stressful than if we had more numbers xx

@TheFanciestPants I'm so glad you have such a good doctor and she's being honest with you and helpful. It's such a hard journey that it makes all the difference! It also feels much better to have a plan in place so I hope you're feeling a little less stressed about things now xx

@pomdownunder1 all I can say is urgh and how unfair this latest development must feel... but as @lemons44 says there is definitely still hope. And you never know, the eggs that survived the thaw may be super top quality and at least now they will get the best sperm!
@lemons44 thank you so so much. It sounds completely bizarre (from someone you haven't met), but your messages are so lovely and they honestly mean a lot. We do have a plan and we asked about IVF timelines, if we aren't getting anywhere in a couple of months with the NHS we will go privately as we have both found this situation super stressful.
I have everything crossed for your next cycle 🤞🤞🤞 xx

Thank you @lemons44 ❤️ if you aren't a counsellor, I think you have a calling. You are always quick to come on and give reassurance, thank you!

And @TheFanciestPants that's a good way of looking at it, I hadn't thought of that. Thank you!

@lemons44 my day 3 would be Sunday, does that rule me out for that? I'll definitely ask anyway, thanks!

DH got his blood results back, and as expected high FSH (14iu/L) and everything else in the normal range. I was expecting high FSH before getting the results but still sad seeing the results. Our GP doesn’t do the genetic testing, does anyone know if this would be done privately by Dr Pippa/ do we need to do the genetic test before the private consultation?

@Lily1994 I am so sorry it's not what you were hoping for. Dr Pippa will refer for the ultrasound and tests she suggests. Your DH can get bloods taken the same day (if you want to crack on) and if you need one Dr P will help you get an ultrasound asap (ours was 2 days later and the radiologist is top of his field too).
She's so nice, you are in the best hands xxx

Thanks @TheFanciestPants xx

Never posted on MN but really feeling the need for support as just don't know what else to do. Feel as tho everything is falling apart.

Been wanting to start a family since June 2019 so stopped using contraception. I was 33 then and very relaxed about it all and not putting much effort in. Fast forward to October 2021 and I was so happy to get my bfp. Sadly it wasn't meant to be and ended up having my right tube removed due to it being an ectopic pregnancy.

Since then nothing. Had first fertility consultation in Jan. My DP got the results of his SA on Tuesday and only 4 immotile sperm were seen. It was a complete shock. As I've been pregnant in the past I'd kind of ruled out any problems with his sperm and naively thought our problems were stemming from having just the one tube. We have a follow up appointment on Monday and I'm a bag of nerves already. I honestly cannot believe that the road to parenthood has taken so long and holding my own baby in my arms feels still so far away.

No one understands this unless they have been through it. I stopped speaking to my best friend as she decided to tell me she was pregnant with her 3rd just one month after my ectopic knowing that I don't even know whether having a baby is even a possibility for me. I just couldn't get over how insensitive that was. I have other friends but no one that I want to share this with. Hence the reason I am on here.

This is the first time in over 4 years that I actually feel like giving up. Why does this journey have to be so hard for some? I'm trying my hardest to stay positive but with my age creeping up it's difficult not to worry and go into overthinking/worry mode. I miss the person I was before all of this.

Reading this thread has been so helpful. Thank you all so much for being brave enough to share your journeys. I am honestly praying for every single one of you to have your longed for babies 🙏🏾💖

@Lily1994 I'm so sorry this has been a hard bit to hear.. the good news is there is still hope, so don't get too stuck in the mud thinking of all the things that can go wrong. We're here for you!
@Creatingspace I'm so sorry you find yourself here and have the difficulty of finding supportive people. My BIL and his wife just had their first right after my canceled fresh transfer and one of my friends told me she's 22 weeks pregnant with her 4th and they're upset because it was another accident... it's so hard when she kept it a secret because she knows we've been trying for years. There's just no good way to tell someone struggling with infertility and it sucks, but they also want to share their joy with you. Just try to think of how happy you want them to be if you get to hold your little one!