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.

[WhiskeyInTheJar33]

Hi @Ljp2022, sorry you're going through this. I was in the same situation just under a year ago. Last July DP and I saw our GP after a year of TTC. DP has a varicocele which we thought may be the culprit but wasn't prepared for what happened next. DP semen analysis came back with azoospermia. We were devastated. I pushed for a second analysis to confirm which came back the same. His bloods were normal except testosterone slightly on the low side. He was referred to a urologist which was a 9 month wait.

We paid privately to see Mr Ramsay in London. Who did bloods to check chromosomes, y-microdeletion and a more detailed semen analysis. We waited 4 weeks for these results.
Thankfully everything came back normal and mr Ramsay was positive that we could work with this. DP he been taking Anastrozole for the last 6 weeks to increase testosterone and FSH to kick start spermatogenesis. We were given a 50:50 chance of successful micro-tese before this. The Anastrozole will hopefully increase those chances in our favour! DP has just had repeat bloods to see if the Anastrozole is working and things are going in the right direction. At 3 months he will do a repeat semen analysis as 1 in 10 men end up with a couple a sperm and may not need micro-tese.

In the meantime I have been referred by my local hospital to Guys for NHS IVF/ICSI. Not sure if we will be accepted as our CCG does not cover non-obstructive azoospermia so may have to apply for specialist funding 🤞🏻🤞🏻🤞🏻 we have an appointment next month at Guys so will find out more then.

Sorry for such a long post but feel free to DM me if you'd like to chat or ask any more questions.

[Ljp2022]

That’s so extremely helpful thank you. I have read a lot about Mr Ramsey in these groups and online.
We are awaiting the outcome of bloods but have been warned this could be 6-12 weeks! It sounds like you’ve got some potential options which you can explore which is great, I hope your next semen analysis goes well for you guys!
it’s just the wait now for the results which is killing me and the more I read the harder it is. It hasn’t even been a week and I feel like I’m an expert in this area!
so I guess next steps are to await outcomes of our bloods and a physical examination? Is there anything else you can recommend that we look into in the meantime?
its such a postcode lottery with the CCG - good luck next month!
do you mind me asking (feel free not to answer!). Did you tell family and friends? We aren’t sure what to do and are scared that if we say we are having problems, people will probe. Struggling to manage comments about us having babies as it is. Thank you again.

[Ljp2022]

@WhiskeyInTheJar33 sorry just getting the hang of this! My response is above!

[WhiskeyInTheJar33]

@Ljp2022 the waiting game is horrible! And yes you Google everything!!! Mr Ramsay laughed and kept calling me professor 😂 However there's not much you can do until you get the answers. I've felt more in control now since we have some answers and DP being on treatment, I feel more positive but it's taken me 11 months to get to this point.

Our parents and DP sister know the full story. My siblings and some close extended family (aunt and cousins) know we will be starting IVF but don't know the reasons as DP feels embarrassed and less of a man because of it. My mum feels like we should tell everyone the reasons but it's not MY news to share. I've just been telling people there's reasons on both sides as I have dermoid cysts on both ovaries which means I have irregular cycles, although am ovulating.


I work in a close team so many of my colleagues know too as I'm always getting asked about when are babies coming along. I'm a talker and this has helped me through the process and have a lot of support around me especially when some colleagues were announcing their pregnancies (when we first found out about azoospermia) my manager has been supportive if I just need space away from growing bumps etc.

However once we start IVF we won't be telling people as I would like some element of surprise when we get our BFP!

[Ljp2022]

@WhiskeyInTheJar33 It’s so helpful to speak to someone going through the same thing.

Knowledge Is definitely power and helping with the control! 11 months in the scheme of things is such a short period of time but it is still a shock! The last 6 days have felt long!

that’s really helpful thank you. Our parents know but am struggling so much with the comments like ‘when will you two be popping one out then!?’ We don’t want to be open right now but it’s hard to hide the pain.

wishing you guys all the best! I’ve got my fingers crossed for you.

[WhiskeyInTheJar33]

@Ljp2022 6 days in for me I think I had just about stopped crying! You just have to do what's right for you and your DP. Nothing or no-one else matters! DP and I are soo much stronger now than ever!

Wishing you all the best too! Fingers crossed all the tests come back with good news and it's something that can be easily solved. Feel free to keep in touch and ask any questions along your journey, happy to help where I can x

[ivf2022]

Hello,

We found out in July 2021 that my DH has azoospermia, after a year of ttc. We were referred to fertility clinic and had our first appointment there in November, where he had genetic tests. We got the results in January and they all came back normal. We also saw the urologist in January, who had a quick look then said he was certain the problem was a blockage (obstructive azoospermia).
We applied for funding in February, it was approved in March then in April DH had PESA and we got 5 vials of sperm. We are starting ICSI next month. This was all through the NHS.

Feel free to ask any questions, I know it can feel very overwhelming and I found it difficult to find information and stories about azoospermia x

[Ljp2022]

@WhiskeyInTheJar33 i know! I go back to work tomorrow, feel like Im in a slightly better mental state (typically I started a new job three weeks ago!).
hope all goes well for you guys and I will most definitely get in touch when we know a bit more! X

[mayihavesomecakeplease]

Hi @Ljp2022, my DH has azoospermia (obstructive? but they never found the obstruction..). It took ages to get a diagnosis through the NHS but eventually he had a successful sperm retrieval with a TESA and we had a successful round of IVF first time. It was a long process because of mis-referrals, so my advice is to double check everything is done correctly with the NHS because our experience is that they were awful with diagnosing male fertility issues. Happy to answer questions if our experience is helpful too!

[Ljp2022]

@mayihavesomecakeplease thats brilliant that you were successful first round IVF! Sorry to hear about misreferrals… thankfully we are in a position where we can go privately but there’s minimal advice around what he actually needs. He has had hormone and genetic bloods which we are awaiting the results for and he had a urology consultation in July including a physical exam. Is there anything else you suggest he needs at the moment or shall we wait until these are done? Thank you!

[Ljp2022]

@ivf2022 thank you so much for this information. Good luck with icsi! It sounds like the nhs have been really quick so that’s great news.
with obstructive azoospermia do they ever look at removing blockage or reconstruction or is it not possible? There’s so much info on the web I’m just becoming lost in the sea of it all! Thank you in advance and good luck.

[ivf2022]

Thank you! We have been very lucky that we have been treated so quickly on the nhs, I know it's not the same for everyone

Our urologist told us that he could try to fix the blockage but there's a very low chance of success so he he doesn't recommended it. We decided to go for pesa and ivf because of the higher success rate.

[mayihavesomecakeplease]

@Ljp2022

@mayihavesomecakeplease thats brilliant that you were successful first round IVF! Sorry to hear about misreferrals… thankfully we are in a position where we can go privately but there’s minimal advice around what he actually needs. He has had hormone and genetic bloods which we are awaiting the results for and he had a urology consultation in July including a physical exam. Is there anything else you suggest he needs at the moment or shall we wait until these are done? Thank you!

That's great that you are going privately! I think we would have tried to go that route if we had known how long it would take, but can't really complain given the outcome. I suppose just to say that in our situation it turned out that even though they couldn't SEE an obstruction, it turned out there was one hidden away somewhere. They had him on hormone meds for six months at one point, and who knows if that made a difference in the end, but it made him feel pretty rotten while he was on it!

[Northbynorthbreast]

Hello OP, my DH has non obstructive azoo which I knew when we first met.

we went down the donor route took several tries of iui and ivf before having ds.

[MaleInfertilityhelp]

authors.elsevier.com/a/1fIwj14kplrKNw

please remember funding for mtese comes from NHS England and not your CCG.
All men with NOA are commissioned for a mtese.
You can push your GP to refer you to a urologist within the NHS for a mTESE wherever you live. It is not like IVF… it is separate
UCLH
Guys
Liverpool
Manchester
to name a few

[Ljp2022]

@MaleInfertilityhelp thats helpful thank you but I think we will be going privately as our nhs waiting list is so long (our referral still hasn’t been triaged) but good to know if needed x

[lemons44]

Hi @Ljp2022 just wondered how it's going? I'm going to join this thread as I am going through this too. We are know 8weeks since DH's first azoospermia semen sample. Since then we have had 2 further semen analysis (both show azoospermia), hormone tests which were fine, and Y Chromosome and Cystic Fibrosis tests, which which were also fine.
DH had a physical exam and ultra sound and the Dr thinks there's a good chance it's obstructive but our next step is surgical sperm extraction to find out if there really is sperm in there or not.
It's so horrible waiting.
I hope you're doing ok.

[IVFing86]

Hello all!

I’m joining this thread to give you all some hope

My OH was diagnosed with azoospermia over a year ago. Our GP was really not helpful and recommended us to look for donors

We went to a private clinic in Greece where they gave us lots of hope only to end up telling us that my OH would need a hormonal treatment that rarely ever worked and that we would need to travel for the treatment with donor sperm ready to use in case the TESA that they wanted to perform failed. We were beyond devastated

Luckily a urologist recommended us to see Miss Philippa Sangster (UCLH). I don’t have enough words of praise for her. She’s an absolute angel, caring and so so knowledgeable

She put us at ease and explained that no hormonal treatment would fix anything (on his case) and that a TESA would be totally counterproductive

My OH had a microtese performed at UCLH recently and they found sperm on both testicles (still cry typing this!) which is now frozen and ready for us to start treatment in the next few months

My advice to everyone going through it is to not give up and to find an expert on the field as many private fertility clinics focus mainly on the female factor (or on getting good %) and might not be aware of the best route to follow

Best of luck 🤞xx

[lemons44]

Thank you for telling your story @IVFing86 and that is amazing news.
If we have no luck with standard surgical sperm extraction our next option would be microtese so it's very reassuring to hear that it worked for you and your DH.
Do you mind me asking, with the sperm they found, would that do more than one round of IVF?

[IVFing86]

@lemons44 not at all, ask away 😉 I didn’t find much information here when we first got diagnosed so I want to share our experience.

They told us that we have enough for 8 to 10 rounds of IVF. We were speechless because we went from no hope and lots of tears to this amazing outcome.

I wish the same to you all xx

[Ljp2022]

@lemons44 thanks for your message it was really helpful.
I think we are at very similar stages! My husband has had a second sperm sample which confirmed the diagnosis. He has had all the genetic and hormonal bloods which have come back normal. He is still awaiting chromosome blood results but doctors think it’s unlikely to be abnormal because he doesn’t have any physical characteristics. We have a urologist appointment this week but everything is pointing towards obstructive azoospermia so fingers crossed there will be sperm! We have a follow up appointment in two weeks to discuss next steps. In the meantime I need to lose a stone (yikes!). Do you have a date for your surgical sperm removal yet?

@IVFing86 wow what a journey you have been through but such a positive outcome. Thank you so much for sharing. Wishing you all the best!

[rosycumbria]

I'm so sorry you guys are going through this. We got my partner's diagnosis of azoospermia in April 2022 after a year of trying.

In that initial sample, there was actually some sperm albeit 0% motility and 0% morphology. Our GP told him down the phone and left us shell shocked. We did another sample with the NHS hoping for better news but that came back with zero sperm, a story which continued over the next 6 or so samples he had to do over the year.

My partner was initially happy just to go with NHS time scales but I was far too worried and keen to get started as I was already nearly 36.

We saw two doctors - Mr. Bromage in Manchester via Manchester Fertility. He was great - warm and knowledgable and recommended either TESE or MTese (we'd ruled out any of the genetic disorders). We also went to see Mr. Ramsay in London. He prescribed Anastrazole which didn't work for my partner.

We were honestly at the point of going down the donor route when we met with an NHS consultant (Jan 2022) who said that he'd recommend going for the TESE giving us a 60/40 chance of success. Unfortunately, the NHS weren't doing TESE as elective surgeries were cancelled because of Covid so we paid for Mr. Bromage to do it. They retrieved 4 vials, checked one to see that the sperm defrosted and it was good news.

We finally reached the front of the queue with St Mary's in Manchester and had my one and only funded round in May 2023. They only collected 7 eggs, 2 of which fertilised and both of which were transferred on day 2.

Astonishingly, given that the consultant gave us a 10% chance of success, I'm currently 11 weeks along. I'm scared to even type this or offer any hope as I feel like we're still so far away from being out of the woods but I remember how heartbroken I was and so desperate for some small chances of success.

I'm glad we went private as it meant that by the time we got to the front of the NHS queue, we were able to just get started immediately rather than waiting another 6 months for the tests. For me, the waiting to find out what (if anything) could be done was the worst.

Wishing you guys and everyone else in this totally crap situation all the luck with it.

[Ljp2022]

@rosycumbria oh that’s such wonderful news! I’m honestly so happy for you because I know it’s such a difficult journey so congratulations!

we had some more positive news yesterday which showed all bloods normal. We have an appointment with a urologist today for a physical exam and then a follow up with our fertility consultant in two weeks. Everything is pointing towards obstructive azoospermia so we are praying we will be lucky enough to retrieve sperm

[lemons44]

That's good news @Ljp2022 about the bloods.

How did the physical exam go?

Thanks for sharing @rosycumbria - I am keeping everything crossed for you for a smooth pregnancy x

[Ljp2022]

@lemons44 thank you so much for asking! It was actually really positive. We have an ultrasound booked for next week. They are pretty convinced that there is an obstruction, they obviously cannot guarantee but offer 60-70% success rate of finding sperm. They have said there is the risk of testicular failure, i.e even though everything is pointing towards obstruction and hormone levels are normal, there is still a risk there won’t be sperm. They’ve suggested we get booked in for sperm retrieval in august/September and depending on what they find, they may even attempt microsurgery to remove/resolve blockage if they find one.

do you have a sperm extraction date yet? It sounds like we are in very similar scenarios! Where abouts are you based?