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.

Soooo happy for you @WhiskeyInTheJar33 !! What an amazing outcome. I bet you are so thrilled to be able to move forward 💗

Little up date from me. I got my period today so this round has also failed. I just feel really confused and not sure what to do around next steps. Everybody else seems to be able to get to day 5 with surgically extracted sperm. I don't know if we have just had very bad luck or if there's more wrong with ours? I read that bad DNA frag can cause a drop off from day 3 to day 5 but I also read something that said surgically extracted sperm doesn't have the same DNA frag issues as normally ejaculated sperm.

I'm just really confused why this isn't working for us.

Ah no @lemons44 im so sorry, probably a stupid question but how are you feeling?

I might be wrong and speaking out of turn so feel free to ignore but my understanding of your first cycle was that they didnt do a great job with your protocol and then all the focus was on fixing that to get to a better retrieval number so they probably didn’t look too much at sperm? Perhaps if at your review when you feel ready this time you could really focus on that and see if they have answers?

do you have more nhs funding or are you left with having to go private? Was just thinking if they could give you answers you could perhaps switch clinic to find a doctor who’s an expert in whatever they think is causing the challenges?

genuinely gutted for you and thinking about you

Oh @lemons44 I am so sorry to hear that. I had everything crossed for you, I don’t really have any words.

Re: what @Carla2601 says, I am not an expert but I do agree it's worth speaking to an expert/a hospital specialising in this. There's lots of technology and techniques to improve sperm selection (even in surgically extracted sperm) that is only available in some clinics. As you have lots of great eggs, I think it's worth a try.
I am absolutely not a doctor but my limited experience of IVF is when things don't work out exactly as expected, clinics tend to be quite negative and only to be helpful after a lot of advocating.
When we asked for a recommendation Dr P said she thought CRGH or King's are worth a look. I know ARGC are expensive but a consultation there could be useful too as they seem to do well with the most difficult cases (I think more than 80% of their patients have had failed IVF cycles elsewhere) as they may have some insights.
I hope that is helpful (if it's not what you need, then do ignore!), please look after yourself x

Thank you for asking @Carla2601 and thanks for yours and @TheFanciestPants advice.

I'm not ok really. I literally cry ALL the time. I am so sick of crying at work. I'm supposed to be leading a big meeting today and my manager is doing it for me and I just feel even more crap knowing this is also impacting my work. I feel so tired after the two egg collections and I can't believe we need to do this all again.

It's difficult because our first round we only had 3 eggs and in total over the two rounds we have had 9 fertilised embryos in total, with 8 making it to day 3. But we transferred the 3 best ones (1 on round one and 2 on round 2) so we don't actually know if those top quality 3 did reach day 5 or not.. if that makes sense?? That's why I'm just not sure if we have been unlucky or if it's our sperm.

I think it's a really good point about exploring other clinics. I do really like our clinic though so I'm going to listen to them first and talk to the embryologists about our sperm and ask in their opinion is our sperm worse than normal SSR sperm? We have used our two NHS rounds now so it will be private.

I was researching yesterday as the surgeon did say now they know where DH's sperm is located she could potentially do an aspiration if we need more and I wondered if it's better quality than micro tese but on google it seems that in general the micro tese is the better option as you get more to play with.

Then I was looking at another thread of people who are having big drop offs from day 3 to day 5 and it was mainly because of DNA frag, and those ladies were actually contemplating tese as a potential solution to get better sperm. We are obviously already using tese sperm.

I will let you know when I talk to the clinic and embryologists anyway.

Sorry this message is a massive ramble I think I'm just letting it all out x

@lemons44 sorry 😞 god such a shitty journey. Don't feel bad for it impacting your work, you'd have to be a robot for it not to. Sending love ❤️

We ended up doing another egg collection recently and thawed the last of our frozen sperm. Out of 10 eggs, none of them fertilised. Apparently the sperm looked fine when fresh but after being defrosted it was barely twitching. So that's both my eggs and dh's sperm that doesn't like to be frozen, what are the chances 🙄

They've recommended a tesa procedure for us and to have a go at fresh eggs and fresh sperm. Not sure if you want to do another sperm procedure yet or not @lemons44, but I'll keep you updated on our progress

Oh @lemons44 am soo sorry! Don't feel bad for it affecting your work! It's a horrible process to go through, be kind to yourself! You and your husband are more important than work, so just do what's best for you!
Is PGT testing an option? I agree with exploring other clinics, ones that deal with the not so straight forward cases like ARGC or CRGH. I understand the lister are good too. Although these are a little pricier, it may be worth it in the long run if you get some answers.

How is everyone else doing??

Small update from me: I'm feeling much better about everything. It was all so overwhelming when we got the news. I contacted my clinic to see what the process is in terms of time frames for being booked in. I have several commitments coming up and will find scheduling bloods, scans etc difficult, so just needed to get a idea so I feel in control. Since we had our funding agreed back in April, our CCG has changed their IVF policy (literally 2 weeks later!!!), so my clinic is having to reapply for funding. I'm glad I contacted them as don't think they would have noticed.
My CCG didn't cover NOA before (so I don't know how we qualified) but they've now changed the wording to "anyone with azoospermia that has had successful micro-tese" qualifies for funding. So I don't think we'll have any problems.

Hi @pomdownunder1
I'm so sorry that none of your eggs fertilised. You must also be really exhausted after a third egg collection. How are you feeling? I found the second egg collection much harder so I'd imagine after a third you are pretty tired. I wish I had more words of comfort but the whole thing just sucks. Just want to share some solidarity 💗

We do still have two vials of DH's sperm left so we've decided to try another two rounds. However I just don't know if it's going to work for us. I have been starting to do some research into donor conception and me and DH have both been doing some research on adoption.

I want to go again ASAP but DH wants to wait until after Xmas to give my body a good rest.

DH's mental health is on the floor at the minute. I think he feels a lot of guilt that the infertility is male factor and that I'm having to keep putting myself through IVF. I'm trying to reassure and comfort him as much as I can. How is your OH doing @pomdownunder1?

@WhiskeyInTheJar33 that's fab news about your CCG changing their policy. You never know, it could have been your case that promoted a change in policy wording! How many rounds of funding do you get? I'm glad you're feeling happier xx

Not sure if this also reassures anyone on this thread but I found this 2023 research that's interesting:

pubmed.ncbi.nlm.nih.gov/36592648/

In summary, there is no difference in ICSI success between ejaculated sperm and sperm taken surgically from the testes. There is however a slightly higher success rate for sperm taken surgically from the epididymus (by 2% more):

Live births rates per ICSI cycle were:

• 28.5% ejaculated
• 30.6% epididymal
• 28.7% testicular sperm

Trying to maintain hope 💗

Hello

My husband had the Tese procedure with the SSR. However, this was unsuccessful. The doctor has suggested hormone treatment and then potentially another surgery. His blood tests were normal. Has anyone else had a similar experience?

@lemons44 we get 2 rounds or 4 embryo transfers. I'm going to ask if banking my eggs over 2 cycles is still an option. One of the consults said they could do this before as there's a risk I could lose both my ovaries because of the dermoid cysts.

It's soo hard for our OHs. The guilt they must feel! My DP said the burden he carried all these months because he couldn't give me the one thing I desperately wanted. It's why he was soo upset after the micro-tese. The relief he felt when they found something. I can't imagine what that feels like. We can only do our best to reassure. I tried to get my partner to contact knackered knackers on instagram, to talk to someone whos been through it and gets it! But he felt too embarrassed!

@Nats140 welcome. My partner had normal testosterone and LH. Slightly raised FSH (but not by much). All other bloods/genetics fine.
He was on anastrozole for 6 months and sperm production returned but poor quality (a couple sperm per sample). Anastrozole was stopped because his bloods were fine and he was producing sperm on his own but within a month of stopping, his count returned to zero. He's just had successful micro-tese after restarting anastrozole 4 months ago. We have 3 straws in the freezer!

Thank you so much for responding. That is very encouraging. We have an appointment in a few weeks to dicuss next steps. We are hoping that the hormone treatment will help.
Its going to be a very long journey, but we are optimistic!

@Nats140 was it a normal TESE he had? You may have more luck with a micro tese.

@WhiskeyInTheJar33 that's a good number of tries and hopefully will be all you need!

xx

Yes, it was the normal Tese. They found 2 samples that had non motile sperm and then took some tissue to see if they could find any, but there was nothing there 😔. It's been devastating, but we are not giving up.
So glad to have found this group.

@WhiskeyInTheJar33 did your partner do the hormone treatment at your clinic or were you referred to another clinic? I am not sure if they do the micro-tese surgery either.

@Nats140 that sounds really stressful. It might be worth seeing a specialist urologist who can advise on the specific circumstances (hormones, Tese type etc). Is this something that might be useful?

@lemons44 you have really been up against it. My husband is struggling with guilt too, especially after out clinic messed up our first cycle and all of those hormones and side effects were completely pointless 😭
I understand that having 1 or 2 full cycles off should be enough for you to feel more yourself, but completely understandable if you want more time off.
I had my work 360+ health check last week and it was really reassuring, so it could be worth getting yourself checked with a more wellness focus as well in case there's anything that is a bit off kilter.
We have also booked our first ARGC consult, bluntly I'd rather pay triple than go through that again. Hopefully we won't need it but I feel much better having a plan in place.
@pomdownunder1 what are the chances eh?! I am so sorry this happened. I have my fingers crossed for you.

@TheFanciestPants the surgeon did suggest hormone treatment and visiting a urologist. There is one nearby. We have an appt on 2 October to discuss our options. They have also mentioned donor sperm, but we want to see if there is any chance with other options working before having any conversations about donor sperm

@Nats140 we saw a private urologist who started anastrozole while waiting for an appointment at our clinic.

@WhiskeyInTheJar33 ah okay. I am sure that we will find out more soon.

@WhiskeyInTheJar33 if you don't mind me asking, how much was the hormone treatment?

Hi all. Back after a break. @lemons44 i am so so sorry to hear about what you have been going through. It’s just so difficult and feels so unfair. Reading about how your OH is feeling and how everything is impacting your work resonates so much with me and breaks my heart at the same time. None of us deserve this and it’s just the hardest mental and physical battle.

@pomdownunder1 hated reading about your cycles and what you’ve been through. So hard. How are you feeling now? Do you feel like you have your next steps/a game plan or taking a break from it all?

@WhiskeyInTheJar33 things finally seem to be looking up for you and I’m so happy to hear that!

@Sleeter0893 how have you been? Are you due a transfer this month?

@IslaO So happy to get an update from you! I know this has been so hard on all of us and it's so difficult to know the road bumps some of you all are going through!
I'm hanging in there. My Estradiol medication is making me ache all over and I'm so exhausted... tomorrow I go for a lining check, estrogen and progesterone levels to confirm my transfer will still be on the 19th. Excited and nervous at the same time!

Does anyone know of any urologists that they recommend in the Essex/London area?

@Nats140 I highly recommend Johnathan Ramsey. We've also seen Dr Tet Yap too (both based in same clinic in London). Pippa Sangster is also another one in London who has some good reviews.

@WhiskeyInTheJar33 thank you. I have heard very good things. We have a meeting with the doctor who did my husband TESE procedure soon. Will see what options he goes through. He did say that we should refer to a urologist. Will keep him in mind