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.

@pomdownunder1 ah snap!! Will look into it here too. Hoping to see dr Ramsay before we proceed with our fertility clinic here so will let you know in Feb what he says! Keep me posted. How are you doing? X

Prolactin can jump a little in stressful situations (having a blood test, infertility anxiety etc). Don’t tend to worry until >800-1000 on 2 consecutive samples

@MaleInfertilityhelp thank you! It wasn’t acknowledged by my fertility doctor but I had a minor heart attack when I googled it so this is really reassuring! Thank you so much!

Hi all

We had our follow up appointment with the doctor yesterday afternoon who did my husbands microtese.

She gave us more clarity on what she found when she operated on DH. Apparently he has very bad scaring in between his testis and the epididymis. She said it was a bit weird how this has managed to happen. It was a bit of a shock to us as she said it could have been where my DH had his hydrocele surgery as a teenager they could have caused this by accidentally stitching too deep and stitching the wrong bit up, noticed and removed the stitch or not noticed and kept the stitch in, or it could have been from an incision when they did the hydrocele surgery. She said there is also still a chance it just could have been caused by an infection.

I asked if the scarring has damaged all the sperm tubules and she said at the top part below the scar tissue it has all spread so yes. But a fair few of tubules are the bottom of the testis looked healthy. DH feels a tiny bit annoyed i think that potentially a bodged operation as a teenager has now made him infertile - which I kind of get.

Then the things we learnt that might help others are that DH now has to have a repeat hormone test to check whether the microtese has affected his hormones. I didn’t realise this but because they have taken a chunk of his testicle out it can actually affect his hormones. This is also the reason why they won’t do too many micro-teses.

And secondly about the sperm! @Ljp2022 she totally reiterated what you said about the sperm. She said that sperm from the testis is immotile as it isn’t developed. She said some labs kind of freak out with this because obviously it isn’t the ‘norm’ so if our lab gets funny about it to tell them to ring her and she will explain. She said they will need to thaw it and wait a few mins, then sometimes add a bit of a chemical to get them twitching. But that even though they are immotile does not mean they are not alive and healthy. So that’s a big weight off my shoulders having that confirmed again.

Hope you're all ok xx

Sorry you've been having random anxiety too @IslaO the weight of what we are going through can sometimes hit you like a truck!

I'm also sorry to hear your OH does have the CF gene. How are you feeling about it all?

Xx

@lemons44 How was your partner after the surgery? How long to recover?

That's good news about the sperm. Did they say if NOA sperm has the same chances of success of ICSI compared to normal sperm?

@IslaO ok thanks, just googling a lot 😂 did your OH have an ultrasound? Mine had a scrotum ultrasound but not sure if that picks up vas deferens?

@lemons44 glad you've had a bit of reassurance. Hope you're feeling ok xx

@MaleInfertilityhelp thanks! That's put my mind to rest x

Hi @donnie12

I think we were both a little surprised at how long DH took to recover from his micro-tese. It is definitely more invasive and takes much longer to heal than other surgical sperm retrievals.

The first week he was very, very sore. He works in quite a physical job so needed the whole week off. The second week he went back to work but was still pretty sore and the wound was quite far from being healed. I was checking it everyday for him to check it never looked infected as it was quite hard for him to have a good look. I would say it took about 4-5 weeks for his wound to really look healed up and him to feel able enough to do things like cycle at the gym. You're not supposed to have sex for 2 weeks either.

He said it is still a bit sensitive now (at 6 weeks post op). His testicle is also a strange shape at the minute where it almost feels like it has a ridge. We thought this might be where they have taken a chunk out of it and DH was worried it might be permanent but the consultant said to us this is because there would still be internal stitches and that these internal stitches will be there for about 6 months before dissolving.

I'm sorry, the consultant didn't say anything about the difference of OA/NOA sperm. She just said that ALL sperm in the testicles is pretty immotile.

When do you think you will have your micro-tese booked?

@donnie12 DH also bought some pretty tight and supportive boxers which he found really helped so I'd advise thinking about that. And we bought some big gauze patches from Amazon that he would fold and place in the pouch in his boxers in case it bled a little.
Sorry if this is TMI!

@IslaO Sorry you been having a tough time with anxiety! Its a tough journey. Keep venting on here if you need. Fingers crossed for you that your appointment with Mr Ramsay goes well. Keep us updated.

@lemons44 Glad you got some of the answers following your DHs micro-tese. How long after the micro-tese are the hormones retested? I've recently listened to an episode on the big fat negative podcast called Knackered Knackers. Its a guy (hes on instagram under knackered knackers) who has azoospermia had a failed micro-tese (i think?). Following his micro-tese he was soo unwell and he was found to have extremely low testosterone levels. He has to apply testosterone gel daily but explains its a struggle because it has to be put somewhere where his wife or children can't touch as they will absorb it too. It scared me a little when I was listening to him tell his story. He and his wife went on to to have twins via donor sperm. Its a good listen and has helped somewhat.

DP and I had a bit of a cry together yesterday. DP blames himself for not be able to "make me happy" and is worried that this process will split us up. I keep saying to him I'm not with him for his swimmers! He said perhaps we should never have tried to proceed with the varicocele embolisation, sperm freezing and potential micro-tese as we are 2.5 years down the line and no further forward and feels we should have just tried donor sperm from the start.

We are wondering if his recent sample having no sperm is down to the fact the doctor told him to stop anastrazole as his hormone levels were normal (DP had run out and they don't prescribe anastrazole) they retested his hormones and said if they were low, they would prescribe clomid instead. The third sample was a month after stopping anastrozole whereas the first 2 samples were done within a week or 2 of stopping.

I have soo many questions and our nhs clinic seem very disorganised and contradict themselves, one doctor says one thing, the next says the complete opposite. If we do, by some miracle, get nhs funding, I will see if I can transfer it to another clinic and move his frozen sperm, as I have no confidence in them. Their success rates are well below the national average, so keen to move forward elsewhere.

@lemons44 so pleased they’ve given you some answers, hope that’s lifted a small amount for your shoulders x

Thanks @Ljp2022 💗

@WhiskeyInTheJar33 our follow up appointment was for 6 weeks post-surgery and she's only just asked him to have the blood test done. So I guess maybe it needs a 6 week wait before testing?

I looked up knackered knackers on Instagram and shared the page with my DH. It's so relatable and I wish my DH had seen it sooner as I think it would have really helped him before his surgery.

That's so frustrating that your clinic aren't really giving you any answers. I really want to scream and shout for you because it must be so confusing and it doesn't seem like you're getting any clarity. When is your OH's next SA? If it is nil again could he retry the anatrazole?

Your OH sounds lovely, caring so much about your happiness ❤️ i know it's a bit different but I always have thoughts like 'I wish we had started TTC a few years earlier'. When we were messed around by our clinic I wished so much we had just ditched them earlier instead of wasting half a year with them and getting nowhere. Hindsight is a really cruel thing whilst dealing with infertility. As hard as it is, just try and remember you made the right decision at the time and we are all just doing our best with the shitty hand of cards we've been dealt xx

@lemons44 thank you for your kind words! I think my DP feels extra guilty because prior to meeting him, I had come out of a 10 year relationship which I ended because my ex didn't want children. I keep telling DP that he wasn't to know this would happen and I wouldn't change him for the world so he needs to stop beating himself up!

His next SA is in a weeks time. He found some left over anastrazole so he's going to take that this week 🤷🏻‍♀️ I'm not convinced it will do anything in such as short space of time but he wanted to try. If they phone him immediately after the sample then we know there's nothing to freeze, so I am going to ask for a face to face appointment with the consultant we saw initially as she was quite good. The last doctor we saw seemed a bit useless and didn't have a clue.

Just wanted to say I am keeping everything crossed for you this week @WhiskeyInTheJar33 that your OHs semen sample is successful. Stay strong and we are here if you need us 💗 xx

@WhiskeyInTheJar33 thinking of you too!

@lemons44 how is your week going? Any updates your side? We are working through our ‘to do’ list. OH confirmed as a CF carrier so now awaiting my bloods, he got his MRI done so have an appointment in February with andrologist to discuss these images and carrier status. Also have an appointment with a new IVF clinic just for a consultation and to shop around a bit but hoping to get sperm retrieval booked in for April.

thinkinf of everyone and hoping you’re all doing ok x

Hi @IslaO seems like it is all moving ahead for you... to do lists really help in this situation and to tick things off one at a time!

Some IVF clinics do open events so that could also be a way to shop around a bit. Have you cancelled the appointment with Mr Ramsay?

Are you going to try and book the sperm retrieval at the same clinic you plan to have IVF? Our sperm is being transported tomorrow from the clinic we had it done to the clinic we are going to have IVF and it really is easy. It has its own personal embryologist transporting it, live tracking, a back up rescuer in case something goes wrong with the vehicle somebody comes and rescues it (🤣) and insurance for £8k. Just wanted to let you know so you can factor this into your decision. We are using a company called 'Embryoport' and it was so easy to book.

Not much to update on here. Our sperm is being transported as I mentioned tomorrow. Our IVF funding application has been made so we need to wait 3-6 weeks for this to process and then hopefully we can start ICSI soon after. We have booked a holiday for three weeks time, the clinic said this is fine but that if I catch covid it delays treatment for just under 2 months. I'm trying not to let that stress me out as we could catch covid just as easily at home too (and did catch it last year).

xx

Sorry @IslaO forgot to ask. How is your OH feeling about the CF gene and MRI? Hope he is ok xx

@IslaO that sounds like things are progressing well which is great. @lemons44 im impressed with how quickly your referrals are going through. Hopefully the holiday will give you something to look forward to too!

Trigger warning guys- I have had the most amazing news and my first transfer has been successful. We are feeling amazed but cautious at the moment. I’m so aware that this group is here to support each other and I know if it were me, I’d feel a mix of sadness and annoyance at hearing this news. I will of course be here to support you all but I’m also happy to step away from the group if you think it’s too emotive right now? Hopefully it’s given you all some hope that it will all be worth it. Sending my love.

@Ljp2022 i can’t speak for everyone else here but this is most definitely not a trigger for me!!! I can honestly say I am elated for you guys. Any member of the azoospermia club getting a BFP is a huge huge boost for all of us. Oh my god, you have made my day! Congrats times a million, absolutely over the moon for you! This brings me so much hope for my journey ahead. Personally, I would love you to continue with us on this! So so happy for you!

@IslaO that is so kind of you thank you 💕 I sobbed down the phone when the nurse told me. Have an early scan in three weeks so just have to hope all goes well now but we are so incredibly grateful and lucky. Praying all goes to plan with you all and that you’ll be in the same position soon xx

@lemons44 @IslaO thank you. DP did another sample today. No phone call, so we are assuming no news is good news! Last time when there was nothing to freeze they called within a couple of hours. We've been on edge all afternoon every time his phone rings! He is going to email the clinic tomorrow to find out what the next steps are and update them of our weight loss (as we both needed to get our BMI's below 30) to apply for funding, which we've done.

@Ljp2022 Congratulations!!! I echo what Isla said... I am soo happy for you, and this is definitely not triggering for me. When I saw your post earlier, it put a smile on my face! Any bfp in the azoo club is fantastic news and gives us all hope that it is possible. Good luck for your scan in a couple of weeks. Fingers crossed its a sticky bean. Keep us updated (if others don't mind).

@WhiskeyInTheJar33 well done on the weight loss front! I found it so hard to drop the pounds needed!
thank you for your kind words 💕 will certainly keep you updated!

@Ljp2022 thank you. It's been a long slog to lose the weight, doesn't help when I'm an emotional eater so being on this emotional rollercoaster, it's been tough! Hopefully we can now start IVF 🤞🏻

I completely relate so well done! All fingers and toes crossed for you @WhiskeyInTheJar33

@Ljp2022 congrats!! That is such amazing news that you SO deserve 💗 I was thinking of you when I posted in the group this morning but didn't want to pry as I knew you'd tell us the outcome of the transfer when you felt ready. It honestly hasn't upset me at all I just echo what the others have said.. it's amazing to have a positive in our azoo club!! 🤘🏼I'm hoping the next few weeks and scan all go smoothly for you.

@WhiskeyInTheJar33 I agree that sounds like good news that they didn't ring you! That must have been an awful afternoon jumping whenever the phone rings though. Hopefully you'll hear more information on next steps soon. I'm really rooting for you that they will start you on IVF super soon as I know it's been a long wait for you guys. Well done on the weight loss too 👏