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 hope everything goes smooth and well for you today. Sorry you've had such a stressful few days.

Ladies, does anyone know if this fsh level shows high? I don't understand the reading!

Thanks @pomdownunder1 and @IslaO

@pomdownunder1 I am not 100% sure as our results lay out looks a bit different to yours.

I think that the reference intervals section might be the 'normal' range, although on ours it says normal is between 1.5 to 12.4 iu/l and I think your paper is saying that normal is between 1-10.

I would guess that your OHs is 18 so higher than the 'normal' range. I'm not an expert but maybe this could be a good thing if that's the issue and maybe it is possible for the doctor to lower it with medicine to fix the azoospermia? Sorry I am not super knowledgeable about hormone levels.

Do you have an appointment with the doctor to discuss the results? Hopefully they can provide more clarity! x

@pomdownunder1 the LH looks within range but I think the FSH is slightly high. I would get an appointment with your GP to discuss and it could be something easily rectifyable. Have you got any genetic tests yet? All we have are GP bloods so far and I’m just getting so impatient now.

@lemons44 did today go ahead as planned?

So update from me.

Stayed in a hotel in London last night as we don't live here. I booked first class train tickets home so DH would have extra leg space as I thought he'd be sore. At the hospital DH was in his gown and socks and we waited.. and waited... and waited ☹️ anyway the first surgery of the day run over so much and we were then told at about 5pm that it was now too late to do ours so we are on a train back home now and need to come back into London to have it tomorrow. The consultant is lovely and it wasn't her fault she couldnt get in the room to do ours. She's going to push for us to be first tomorrow as I think she feels sorry for us.

I can't believe the luck we have had:

• waited 6 weeks for our original SSR for it to be cancelled the day before
• waited about 7ish weeks to have it to be told the clinic won't do it for us
• splash out on Mr R and just our luck, he is off sick for the first time in 25 years (obviously not his fault)
• rebook with new consultant at new hospital, got SO CLOSE (in DH's words... the socks were on!) for us to now be on our way home exhausted, DH starving as he wasn't allowed to eat and drink from 5am, and just not sure how much more we can take.

Honestly I don't know what I will do if something else goes wrong. Tomorrow has to be it. It HAS to be. This much bad luck relating to a simple SSR can NOT be normal!

@lemons44 oh what a shame you didn't have it done today after everything. Really feel for you. Hopefully tomorrow will be the day and all goes well.

DP did his first sample for freeze yesterday. Really hoping there was something in there to freeze. Annoyingly we don't find out how much they've frozen until he's done the third sample which will be in January.

@lemons44 i am so sorry. You guys must be exhausted and just want this whole wait to be over. I have got everything crossed for you that today will be the day x

@lemons44 oh my god the absolute frustration!!! I am so sorry. It’s the mental build up and being let down last minute. I’m so annoyed for you but I have high hopes for today- you will be first and this is the day it will be done. Keep your chin up- you’ve been through so much already, today is the day the tide turns in your favour!

@lemons44 thinking of you guys! Hope all is ok xx

Morning!
So sorry for a delay in updating you - yesterday was very full on.

So it is good news so far…they did the procedure and they found sperm!! They just need to check the quality of it but fingers crossed it is good enough to use for some ICSI!

The doctor only told my husband this once he had woken up and was groggy/sleepy and we didn’t have a chance to talk to her again before we left last night. So we’ve sent through a lot of follow up questions we need more clarity on. For example, how much they found, whether the azoospermia was due to an obstruction in the end, and how easy it was to find. She said if a normal surgical sperm extraction doesn’t work she will do a micro-tese there and then - judging by the amount of time DH was gone we think it may have ended up being a micro-tese. This has confused us a bit as we really thought it would be due to an obstruction and micro-tese wouldn't be required.

It seems from the discharge notes that DH had a lot of old scar tissue in his testes. He’s also been prescribed antibiotics in case this tissue is linked to an old infection. DH had surgery for a hydrocele when he was a teenager so we are wondering if that’s caused scar tissue that’s affected the sperm.

So we do need further clarity but for now it just feels so good to have finally taken a step forward!

@lemons44 oh my gosh this is fantastic news!!!!! Best outcome is finding sperm I’m so pleased for you both!!! I really hope this is a big weight lifted for you! It was for us xx

@lemons44 you found sperm!!!!!! Yes!!!!!!!! I’m so happy for you both!

god all the money and waiting and you both didn’t get a full debrief afterwards. I know they’re busy but I’m annoyed about that for you. But regardless, this is a super outcome! Strange about the scar tissue.. i wonder what else could have caused this?! Surely the most likely reason would be the surgery from his teens. But listen, he’s making sperm, they got sperm and this is the best outcome!! You can breathe a little!

@lemons44 soo pleased for you!!! After all the waiting and uncertainty you've faced getting there, so happy they found sperm and Hopefully you get the answers to your questions

@lemons44 wow!! That's an amazing update. So happy for you guys. And what a stressful lead up. Hope your husband has a quick recovery

I know @IslaO I did feel a bit downhearted that we didn't get a full debrief. I think our issue is as Mr R is off sick, another consultant squeezed us in between her own patients. She was absolutely brilliant but very busy and I think after ours she went straight into another surgery so didn't get to see us. I'm doing some chasing tomorrow as I don't even know if she now hands is back to Mr R for a debrief as technically we are his patient.

I am still feeling relieved but also now feel a bit anxious about waiting to find out about the quality. I was reviewing my OH's discharge notes in more detail now the emotions have worn off, and it says he had a PESA (the needle extraction) and micro-tese on one of his testicles. I can only assume that the needle aspiration method failed hence the micro-tese. What I'm not clear about is whether it failed because he has a production issue or whether it was the scar tissue that stopped it working.

The other thing that is also playing on my mind is we have to have a follow up in 6 weeks for a wound check and 'results'. I know with micro tese they do a thorough check and grade the sperm, check for things like Sertoli cells, and look at a biopsy as micro tese they do take small sections of the testicle out to look at... but surely this won't take 6 weeks?!
Does anybody know any more about how long it takes to check sperm post-op? @Ljp2022 I know you didn't have micro tese but how long until you knew about the sperm quality? Did they grade it?

Thanks for everyone's comments. How is everybody else doing?
X

@IVFing86 I know you haven't posted on this thread in a while but do you mind me asking how quickly you found out about the sperm quantity and quality after your OH's micro-tese? xx

@lemons44 it certainly doesn’t sound like the smoothest journey! Can you call up tomorrow to ask?

My husband had his wound check done by his GP rather than the consultant within 7 days post op - they checked how it was healing, swelling, stitches dissolving, etc. might be worth calling your GP? He was seen by the nurse practitioner.

With regards to sperm quality, the embryologist checked it during the surgery. I’m sure this would have been done with you guys because it’s the only way to determine if there is sperm or not!

they then called us later than afternoon when they took it back to the labs to have a better look and graded it then. We had been warned that sperm in the testes doesn’t have a chance to mature so he wouldn’t have fully developed sperm. This would be the case with all men with azoo. In the lab they found some sperm were ‘twitching’ which means then had a slight wiggle in their tail but were unable to move. They then explained that they would freeze it and thaw a test batch after five days. They explained that not all sperm would be strong enough to survive the thaw but thankfully his did. The only thing I could think would take 6 weeks is to check the tissue cells themselves but not the quality of the sperm as this needs to be frozen within 12 hours of procedure. If I were you I would call tomorrow to chase and explain that you weren’t given a clear handover?

Thank you @Ljp2022 your message has really helped. Sounds silly but in all the emotions I kind of forgot that they would need to freeze it within a quick amount of time so would have to know the quality and quantity pretty quickly! That's made me feel a bit better as we should definitely know today. Mr R's PA is going to sort it for us so we get our answers 😊

@lemons44 great that you will know more today. Hope you’re ok. It hit me today just how long this journey is and how every step of the way is filled with such anxiety and anticipation- made me so angry in some ways knowing that this comes so easy for most people. Finding tonight very hard. Perhaps it’s the anticipation of our first meeting with a doctor on Wednesday since we put the brakes on everything in the IVF clinic and decided to look into the cause of the azoospermia/impact of the varicocele. I just feel so down tonight.

how are all the rest of you ladies doing? X

@IslaO im really sorry to hear that. Be kind to yourself, there’s so much going on and this really is a rollercoaster.
i have been really low this week. The side effects of the injections are low mood and I certainly feel it, just trying to keep pushing through!

Sending big hugs @IslaO. I think all infertility is hard but what us girls are dealing with is especially difficult because it involves so much time and lots of 'what ifs' and it's a total head scramble, not to mention the shock of no sperm, which I doubt any of us expected!

I don't talk to any of my in person friends about this as it feels too personal and they wouldn't understand, but I take a lot of comfort in having this group and knowing I'm not going through this alone.

I am hoping that your appointment goes ok tomorrow! Please keep us updated. ❤️ maybe note down any questions you want clarity on so you can refer to your notes in the appointment if your mind goes blank.

@Ljp2022 sorry you are having low mood. Make sure you are giving yourself lots of TLC as you're going through a lot physically and mentally! Even small things like your favourite meal. Are the injections for a frozen transfer? Have you fully recovered from the OHSS?

All ok here. Still haven't had our debrief so don't know about the sperm quality and quantity yet ☹️ i have chased again! I don't want to moan because we are SO grateful we have sperm and I know how lucky we are. It's just I now feel very drained by the past few weeks and the emotions are catching up with me. It's a very tough journey.

So confused. Apparently they are waiting for our Embryologist report in the new few weeks before we can hear about quantity and quality of sperm. I don't know if this is normal and can't find anything online

@IslaO sending big hugs. I remember feeling exactly the way you do leading up to our first appointment with Mr Ramsay! I think I googled everything to be prepared for anything he might tell us, which just made me anxious and more angry. It certainly is a rollercoaster of a journey!

@lemons44 sorry you're still having to wait for answers, hope it won't be too long and fingers crossed it will be all good news!

@lemons44 that sounds really frustrating. The only thing I can think of is that they may have outsourced for the embryologist? I find it incredible that you are paying for the service and it is taking that long!

Well ladies, big appointment today and what’s great is that the doc feels he got to the root of the problem.. no vas deferens no no pathway from the testicles to the penis for the sperm. Very happy to have the root cause but no worried that he was so dismissive of the varicocele.

@lemons44 you ok? The bloody waiting is ridiculous!!!

@Ljp2022 whats your current status- just mental and physical rest until the new year. Do you have a date for your next step?