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 you are all so supportive and lovely. Thank you so much!

@Ljp2022 echoing the same!! Any bfp in this group is amazing and gives me hope!! So happy for you and your dp!

@pomdownunder1 thank you!

Hi everyone,

Hoping you won't mind me joining this lovely supportive group! I'm in a similar position to you all. We found out my husband has non-obstructive azoospermia in April last year after over a year of trying (was a massive shock as he is generally fit and well). We saw Dr Ramsey who prescribed some meds, which he has been taking for 6 months now. Just awaiting a repeat semen analysis and then we have M-TESE booked for March (unless by some miracle they find some sperm in his repeat semen analysis!)

Completely echo what others have said about it feeling like a very lonely journey. Everyone I know seems to be having babies at the moment, and after two years of trying I've got to the point that I just feel quite bitter and resentful at friend's pregnancy announcements.

I'm not much of a forum poster, but wondered if anyone based in London would fancy meeting over a very well deserved glass of wine, drop me a private message if so!

Wishing everyone all the best with their journeys, lovely to read some positive news from you @Ljp2022 too! xx

@springflowers2023 welcome! Sorry you find yourself here but it is such a supportive and informative place to be! I'm not in London but that's a nice idea!

Hi @springflowers2023 sorry you find yourself here too.

Are you having the M-TESE with Mr Ramsay?

Eurgh I totally know what you mean about the announcements. I've just deleted my Instagram off my phone because of celebrity announcements too.. I think it was Stacey Solomon who tipped me over the edge 😔

I'm am sometimes in London for work so will drop you a message when I'm next due there to see if you are free! I often think how amazing it would be for all our other halves to meet up as I think it's also so lonely for them. My husband is still on anti-anxiety medication because of the stress of this! Following that knackered knackers account has helped him though.

@pomdownunder1 when is your urology appointment?

xx

@lemons44 15th Feb 🤞🏻 thanks for asking! Glad you've got a holiday booked, we've just got back. Really does take your mind off things.

Has anyone watched Alex Jones - Making babies? My mum told me episode 4 is about male infertility and there's even an Mtese (successful). Just working out how to watch it here!

@springflowers2023 welcome! Our journeys are very similar. Good luck for your treat semen analysis! Did Mr Ramsay prescribe anastrazole for you. My DP had 2 sperm in his sample, we have no idea whether it was the anastrazole or varicocele embolisation, most likely the latter.

I live in Kent not far from London. As @lemons44 says, I think it would be lovely for our DPs to meet up as it's such a lonely journey.

@lemons44 glad your DH is finding knackered knackers helpful.

@pomdownunder1 I am watching Alex Jones making babies. This weeks episode there was a chap with azoospermia for the last 6 years. He's been freezing samples and gets the odd few to freeze. Felt very close to home watching their story.

Thanks for the welcome all!

@lemons44 we are having the M-TESE with Prof Minhas. We were due to see Mr Ramsay again at the start of Jan to discuss next steps but unfortunately he was off sick so had to cancel our appointment.

@WhiskeyInTheJar33 Mr Ramsay prescribed anastrazole then a couple of months in added tamoxifen, I think because his testosterone had gone up but maybe not quite enough. Great news that there were two sperm for your DP. At the start of this journey I never thought I'd be excited by two sperm but I definitely would be now!

Totally agree it would be nice for our partners to meet too, it is such a lonely journey! I think my DH would be keen. Will have a look at the Alex Jones azoospermia episode, thanks for recommending.

@IslaO just wanted to let you know my dp got his prolactin tested again and it's gone back down to normal range. They think it was slightly higher due to stress of having blood test, might be similar in your dp's case as well

@Ljp2022 how are you feeling? I’m so interesting to know as I don’t believe I’ll be able to enjoy a moment if I am ever lucky enough to get pregnant. This whole journey has robbed me of any sort of chilled approach! Thinking of you and hoping you’re great.

@lemons44 the bloody celeb announcements are so trigging at the moment- Meghan trainor (so smug!!), Kate Ferdinand, Stacy Solomon, Molly Mae.. the list goes on. What I find hard is seeing someone like molly Mae give birth knowing I was desperately trying the month she conceived.

@pomdownunder1 thats so good to hear about prolactin. Great! I won’t get too hung up on a slightly elevated level so..

@springflowers2023 welcome to the group no one wants to be a part of but that is a really great support. I would love to be able to meet up but I’m in Ireland. It sounds as though you have a plan of action in place and that things will start moving quite quickly for you soon. Are you doing ok mentally?

im taking today as a win.. after my OH was confirmed as a CF carrier, I had to get tested and today my test came back as negative- yahoo!

@IslaO oh bless you! It’s honestly been a really scary time. I’ve had cramping the whole time which can be normal or a sign of miscarriage. Also had some blood on my pessary this weekend so they’ve brought my scan forward to next week as again, could be completely normal or a sign of approaching miscarriage. We are trying to stay hopeful but still obviously upset and worried. Wish I could say it’s smooth sailing!

wahoo negative CF! Take it as a win!

@IslaO defo a win! Mine came back negative as well, so celebrating alongside you!

@Ljp2022 gosh,I can imagine that is so stressful. I hope you're ok and can lean on the people around you xx

@Ljp2022 sorry to hear you've had some bleeding. It must be such a worry, but I've heard loads of stories of people who had bleeding in early pregnancy and everything turned out fine. Will be keeping everything crossed that this is the case for you. Hopefully the scan next week will bring some reassurance.

Hi @IslaO, thanks for the welcome and for checking in. I think we are both doing as well as we can do mentally, but it's such a difficult journey (as I'm sure you all know) and I definitely have days that I just feel miserable and hopeless about it all. How about everyone else? How do you all cope with it?

Hi all,

I read through this entire thread last night and found it so helpful. Thank you all for sharing your experiences. I’m not entirely sure if our situation fits in this forum so if there’s a more appropriate one let me know. I’m 33 and my partner is 48, he has three children from previous relationships all conceived naturally. He had a vasectomy around 12 years ago but we would like to have a child together. We visited a urologist, Gareth Brown actually, didn’t realise he was an M-TESE specialist until seeing other mentions of him here. We were initially thinking reversal but given the length of time since it was done the success rate could be questionable. We decided to investigate the ICSI route also. That all ticked along quite nicely the last few months, AMH test for me (fine) virology before SSR for my partner. They’ve suggested a lite IVF cycle for me and my partners SSR was on Tuesday at the clinic. They were expecting to do a PESA but in the end had to do a TESE and didn’t retrieve many sperm. The embryologist said enough to do one round of ICSI and his preference is to collect enough for three rounds. Donor sperm was mentioned as a back up which really came out of left field and blindsided us if I’m honest. I was trying to take in all that was being said as my partner was coming round from the sedation at the time! Apparently every couple of minutes they would see a moving sperm amongst others that weren’t moving. Reading on here it seems that even the ones that aren’t moving aren’t necessarily not ok. It’s been suggested that he have his FSH tested to see whether that is raised and if perhaps post vasectomy his bits are just not producing much/winding down. I’ve not found much online discussing that particular scenario. I know some sperm has been frozen but I’m not sure of actual quantities. Had we known this beforehand I think an M-TESE procedure might have been better from a sperm collecting point of view. The embryologist has also asked us to give him notice of when I’m doing my bit as he’s expecting a difficult ICSI procedure which has me worried to say the least. I’m sorry if this comes across in any way as insensitive as I know there are others here who are hoping to find sperm and in that regard we are fortunate that we have. I’m just not quite sure where we fit as it looks like we have an obstructive AND potentially non obstructive issue. If anyone has any similar experience or insight to share I would be very grateful. Thank you x

Hi all,
Just catching up!

@Sums20 I'm so sorry you're in this situation. Regardless of the cause of your OHs azoospermia I am sure you're going through all the same emotions as us. Has your OH had his FSH done yet? I really did not know it was possible for men's bits to start winding down. Do you know if they took the sperm from his testes or the epididymus? Our consultant was very clear in that sperm in the testes in general does not move much. She did say if it gets extracted from the epididymus it can move a bit more as it's that bit more developed. What I am learning on here and through our journey is there are some embryologists who maybe are not as experienced at seeing and using testicle extracted sperm as I suppose if you compare it to normal sperm that whizz around it might be a bit of a panic thinking they are all dead sperm, when are not they just can't move much.

@Ljp2022 thinking of you and hoping you're ok. We are hear if you need us ❤️❤️❤️❤️

@springflowers2023 my main coping mechanism has been throwing myself into work, so I don't think about things, which I don't think was the healthiest coping mechanism although did earn me a performance related pay rise 😅 I've found the podcast recommendation on here really helpful 'the big fat negative' and looking at the knackered knackers Instagram page. And talking on here on bad days has really helped me too, more than anything. Nobody else understands it but the people on this group. Also I try and say to myself that all this time with the investigations and surgical retrieval and endless waiting between appointments.. it just is an opportunity to be more prepared for when (if) we eventually do have a family. So I try and see that as a positive, like time to progress at work before I potentially become a mum and want to cut down, or time to read lots of books I wouldnt have time to read, or go places we couldn't with a child etc. it just makes me feel that bit better about the constant waiting by trying to turn it into a positive.

@IslaO amazing news! That must be a big relief!

@pomdownunder1 I'm going to try and watch that episode of making babies this weekend! I've never seen it before.

xx

@pomdownunder1 just downloaded all the Alex Jones Making Babies to watch and just realised it's at Kings. When me and DH were in the waiting room for our NHS appointment, one of the clinics we can choose for IVF is Kings, and in the waiting room they had a poster for anyone interested in taking part in a TV show during their infertility journey. I just said to DH we could have been in season 2 🤣🤣

@WhiskeyInTheJar33 I forgot to ask in my previous message how you are doing xx

@lemons44 thanks for your reply. No he hasn’t had his FSH tested yet, that’s the next logical step I think. From my ridiculously extensive googling this last week it would appear that there’s some evidence that sperm quality can be reduced after a vasectomy although I don’t think there’s been a lot of research into it. They definitely took sperm from his testes and the embryologist said he would pick through the ‘debris’ (his words) and find one or two moving every few minutes. I don’t remember him mentioning seeing any that wasn’t moving. Had we known this before I think an M-TESE would have been the better choice for collecting the most sperm possible. Naively we did nothing leading up to his retrieval, no supplements/vitamins, no small lifestyle changes (although he doesn’t drink much at all or smoke anyway) just assumed it should be fine as he has proven fertility in the past. That seems really silly now.

@Sums20 im so sorry you find yourself here too! It must have been a real shock too as you had expected things to be normal. We all know how you feel, but I know it’s not easy. Do they think you will be able to try IVF with the sperm they have found? Will they be able to repeat the SSR at a later date? we were told they can repeat M-TESE after a year, not sure about the other types of SSR.

We got the results for DH’s post-treatment sperm analysis - still no sperm. We were mentally prepared for that so felt a bit disappointed but not too bad. Holding out for M-TESE in March now. Have also been talking more about donor sperm which has been sad, but also nice to think that we will hopefully soon be moving forward, even if it’s not with the route we originally planned.

Hope everyone else is keeping well. @lemons44 i love your ways of coping and smiled at your performance rated pay rise. Got to find the silver linings somewhere 😅

Hi @springflowers2023 thanks for your response. All the waiting and wondering is the worst isn’t it. The embryologist said enough was retrieved for one ICSI cycle, he likes to have enough for a few cycles normally. Plus he described it as likely to be a ‘difficult ICSI’. I’m guessing because of the lower amount? I think that’s why I feel in a bit of limbo, I’m positive about some sperm being found but it’s unclear now whether there’s an unexpected production issue. My partner is cursing ever having the vasectomy in the first place. Blood test is booked for my partner for next week to check out his hormones. They didn’t say to repeat the SSR but having read comments from others on here about M-TESE vs TESE if we need to try again we would choose M-TESE. We are fortunate to be in Wales where Gareth Brown is a specialist in it (another thing I learnt on this thread, the hive mind truly is epic!) The TESE was pretty brutal for my partner and my understanding from what I’ve read is that it’s more of a ‘random’ approach to finding sperm (they take testicle tissue and look for sperm in it) than the M-TESE which looks for where the sperm pockets are in the whole testicle. I also believe it has a higher retrieval success rate. Someone please correct me if I’m wrong there, I’ve turned into a Google Professor!

Sorry @springflowers2023 that there was no sperm still. At least all of the meds your OH has been taking is going to give you the BEST possible chance for the M-TESE. I will be keeping everything crossed for you and hoping time goes quickly so it will be over and done before you know it.

@Sums20 I think that was a bit of an unfair comment for your embryologist to make considering they haven't clarified why they think it will be difficult 😖 Maybe they are just not used to seeing surgically extracted sperm so the low motility is a shock? They didn't say debris for us but did say there were various other cells, which is probably the same thing.

Yeah you are right about the difference between the TESE and M-TESE, with the M-TESE they pop the testicle outside the body and they can see what tubules look healthy and are more likely to have sperm, rather than the TESE which is more blind as they can't see the testicle as it's inside the body still. How is he recovering from the TESE? Hopefully one round is enough and he won't need any more Ops. My husband took quite a while to recover from the M-TESE but the scar looks really good now, you can barely see it.

Hello all. Hoping this is the right place to join if that's ok? This is all very new to me and trying to learn a lot as we go. We've had initial tests and mine all seem OK. My partner had a semen analysis which only showed 12 sperm after centrifuge. A repeat test showed only 3 immotile sperm. We have an initial consultation at the fertility clinic next week (nhs). Just wondering what we should expect from this initial appointment really and whether they would do any investigative tests for him etc? How quickly will it all take to get moving now we have the first appointment? Would love some tips and advice from anyone that's been through it already. Thanks

@Magix86 Sorry to hear this. However the good news is your partner does have some sperm so the urologist has something to work with.

Honestly 99% of doctors do not have a CLUE about male fertility especially within the NHS so I'd encourage you to see a private urologist who specializes in male fertility (Jonathan Ramsey if you can afford it) for a second opinion and give you the best treatment possible that your partner won't get on the NHS.

Hi @Magix86 sorry you're going through this too. One of the first things they should be checking is his hormone levels through a blood test, especially FSH levels. Has this been done yet through the GP?

@donnie12 hope you've been doing ok x