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 I'm so sorry you're being messed around so much. I don't know if you remember but we were dreadfully messed around too and I really regret not leaving our clinic sooner. We stayed with them for a good few months whilst they messed us around and by the end our mental health was literally on the floor.

When we were referred to NHS fertility services we went to a hospital who then did the funding application and then we could pick from multiple clinics. Who did your funding application? As I recon they would be able to advise where the funding could be used. I'd be really shocked if you only have one clinic in your CCG that could do the NHS IVF?

I'm just really angry on your behalf as I know hard it is to have an incompetent clinic not give you any answers!

100% keep up the complaint and just keep demanding to know what the plan is for your OH and when he can have a micro tese. Ask to see your OH's treatment plan - they can't deny you access to this and will have to give you something. I would say something like 'we would like to see [name] treatment plan because we have real concerns about the lack of care we are receiving and would like this for when we contact HFEA'

Sorry I'm going off on one but I'm really angry for you 😡

@itsmschanandlerbong the only quote we got was from Bourn in Cambridge (picture below)

We had to go with someone Mr Ramsay worked with in the end and it was about £6k, which I know is a lot.

Thank you, do you know if this includes any initial tests / consultations?

@itsmschanandlerbong thanks. That's the thing my clinic do not get. I'm not asking for much, just that they communicate with me! Instead they're just increasing my stress levels!

@lemons44 I want to set a final date and if we don't have the answers or next steps in place then we move on. It's hard trying to convince DP.
The clinic/hospital im at did the funding application (so I don't hold out much hope for them telling me where else I can go). There are some local clinics that I could probably transfer to but reading comments on the HFEA website they don't have good reviews either and success rates are low.
It's soo hard knowing what to do for the best!

Oh my goodness, I've been absent for a bit... just read through all of the posts and my heart is breaking for everyone new here dealing with the same situation, but there is hope!
My DH was supposed to have TESE procedure done this morning and we'd know if it was successful.. then didn't ask the time off of work when the appointment was scheduled because two of his Co workers did before him for this week. !!!! That was not a pleasant evening when I found out... it's now rescheduled for April 19th which isn't terribly far away but is the day after his birthday.. oh well!
I wish I'd checked in on everyone for UK mothers day :/ in the US, ours is in May so I'll at least have TESE results prior to this.
I graduate from university in May so I'm focusing all of my anxiety and energy into that to avoid stressing about TESE results and IVF processes too much.
The worst part is going through my BIL's pregnancy with his wife. I'll start stims in June if there are viable sperm and she'll be 9 months pregnant and is planning her baby shower on June 11th... so idk if I'll be a happy little peach lol! (Idk if I've said it, but DH will be 32 and I'm 29) we've got some time.
I'll definitely be more active on here and hope to help everyone else as much as possible. I know being diagnosed is so difficult. Our whole process has been 6 years in the making. Our first fertility clinic called me after the first SA and told me DH had 4 sperm... told me we have next to 0% change of ever conceiving. I remember just melting into the couch home alone and crying my eyes out.. we stopped treatments for a couple years and went back about 4 years ago to our current doctor who was at a different clinic. The SA came back with 1 sperm. We couldn't afford treatment and I'd just gone back to college so it wasn't viable to pursue. We now finally have the funds, have a game plan, better jobs, I WFH, and we're in a healthier place mentally with all of this. I give our story in the hopes of giving others hope that just because it's taking a long time, it's so worth it!
We've been through the highs and lows, the no sex phase, DH not wanting to do anything, me not wanting to continue trying, being ok childless, not being ok.. it's a horrible Rollercoaster. The worst part was when we talked about why we weren't having sex.. we felt there was no point to it. Then we remembered to just have fun ;)
Love and prayers to everyone who finds themselves here posting our just looking for info relating to them! This group is amazing.

Hi all,

Hope everyone's well! Just after some advice. I went for my egg retrieval yesterday and they retrieved 8 eggs, all ended up being mature. I was pretty disappointed in this number as I thought it would be higher, even though I don't have much to go off. My dp's urologist wanted at least double figure eggs before he books him in for his mtese. Would you do another round?

@pomdownunder1 well done that’s a huge step! Might be worth having a conversation with the urologist? I’m surprised they said double figures because I think the average number of eggs for egg retrieval is between 8-14 so you’re in the average range!

@pomdownunder1 8 mature eggs is a really good place to start. I would push for the mtese with this number- aiming for double figures was a little ambitious. 8 mature eggs is great- congratulations!!!

@pomdownunder1 I also think 8 is a really good number. Well done for getting through this stage 💗
Maybe just be really clear with the urologist that you would like any leftover sperm to be frozen for future use. That way if you do need to do another egg collection in the future hopefully there will be frozen sperm ready, rather than a second sperm extraction.

Thanks ladies, you've all made me feel a lot better about it! I'm on groups where people get 17-22 eggs so I though my measly 8 weren't going to cut it. I'll have a chat with the urologist and push for mtese.
How's everyone getting on?

@pomdownunder1 8 is so great as everyone else has said….especially 8 mature. At my clinic they always said too many would often mean they weren’t mature so they were aiming for 12 for me in the hope of 6 mature if that helps (that might not be 100% the right numbers but it was def under 10 mature as the target…..and I was 35 with good amh as it was an OH ‘challenge’ so that wasn’t a skewed number by a condition), really well done getting to this point and hopefully the rest goes just as well for you

@pomdownunder1 how are you feeling about things now? Hope you're doing ok.

@Sleeter0893 really hope this month goes quickly for you so April 19th comes round before you know it.

Little update from me. Hope everyone is doing OK! We had our follow up appointment. OH now diagnosed with azoospermia following the 3rd sample. Initially he had 40, then 3 and now no sperm 😔Waiting for a scan to see what's next. Waiting for results of genetic tests too although they didn't do cystic fibrosis and I thought this was usual to be tested?We won't be referred for ivf for another 10 months as they say he needs to have been registered with my gp for a year. Which just feels like a lifetime! I guess it all depends on the scan for now but may then have to consider going privately...its just so expensive for SSR and then ICSI so also wondering about going abroad. I asked whether they could collect my eggs now while we wait - I'm already 36 and really worried that time is not on our side....but they won't do that (nhs won't anyway). The consultant just told me he hopes my fsh stays below 10 over the next year 😧So feeling a little bit stuck for now. Even if we wait for a year to be referred we don't even know if it will be successful and will then have to go privately anyway as we're only entitled to 1 nhs round.

@Magix86 so sorry to hear that it’s so stressful isn’t it - could you query it because that doesn’t sound like a sensible policy and it’s not one I’ve heard of. I might be completely wrong but sometimes with the nhs it’s worth being pushy. It’s surely completely arbitrary how long he’s been registered and it seems really unfair. Good luck to you both

Hi @Carla2601 thank you. I completely agree with you and feel it's really unfair. I looked at the integrated care board and it does say under the criteria that the couple have to be registered with a local gp for 12 months! We will be referred to Bourn Hall but the referring consultant in our local fertility clinic won't make the referral because of this. Their criteria however also later on states that if azoospermia is diagnosed then treatment should be offered immediately, so I'm going to try and contact them directly to argue this point and see if there might be a way around it. There just seem to be so many barriers throughout this whole process that I'm wondering if we will ever get there!

@Magix86 Interesting your partner had 40 sperm before as shows he is capable of producing sperm. Have you seen a proper urologist who deals with azoospermia as to be completely honest 99% of NHS doctors don't have a CLUE about male fertility. You mentioned Bourne, Oliver wiseman there is one of the best male urologist's. I'd personally pay to see him private about your partners condition or see Jonathan Ramsey. Might be something they can give him like Clomid, HsG or Anastrozole to up his sperm rate so you can freeze the sperm rather then go through an expensive microtese.

Hi @donnie12 thanks for this! Has been a confusing time trying to think why his results have steadily gotten worse, and what might be causing it. We were told he'd be seen by the andrologist at Bourn Hall, and now you mention this specialist I'm hoping it's him! Although I've just realised I'm now not sure whether this wouldn't happen for a year if we won't be referred for ivf until then...🤔

He has his ultrasound booked for 3 weeks time. I was thinking of Jonathan Ramsey as so many ppl have recommended him but wanted to at least have the 3rd semen analysis, genetic bloods, as well as the ultrasound done first as hoping this might speed things up with Mr Ramsey and also mean paying less for investigations that he would want if we can get them on the NHS first. If that makes sense! But yes I think this might be the way to go next. Thank you for reminding me of this.

@Magix86 sorry to hear – it's all so stressful. I agree with @donnie12 about seeing a proper urologist. It seems like your partner can produce sperm, so that sounds hopeful? All the best with it.

I don't have anything to report really... I'm still giving my partner some space to come to terms with things, but the more I look into it the more it seems like there is very little that can be done in his case. And at 38 I know time isn't on our side. This week has been particularly difficult – we had a birthday on the weekend where one couple brought their 8-week-old baby, another was celebrating successfully freezing embryos to use next year, and another announced they are expecting. It's just so hard – as I know you all know. I don't have anyone else to talk about this with, so posting here.

@UnluckySeaUrchin that sounds so difficult. Are your options looking like SSR or donor then? Is he just completely refusing to talk about it?

@Magix86 that is so unfair! That makes no sense. I would definitely try and appeal it if you can. At least he has produced sperm before, that is a good sign. Hopefully you'll get the tests results back soon so you know what you're dealing with.

My husband had his repeat SA and bloods yesterday, consultation tomorrow. I am super anxious about it, just want to know now so we can think about how to move forward.

@Magix86 thats hopefully positive as you have a diagnosis fingers crossed they’ll refer you straight away. We bugged them so much that I think they did things for us just to shut us up. It’s not a pleasant experience but could be one way to go. I really hope they listen to you and get you referred as I know the waiting is sort of even worse than the diagnosis itself because it leaves you feeling so uncertain and worried doesn’t it!

@Magix86 was one of the genetic tests the karyotype one? If so I think that one may also cover the cystic fibrosis screening.

I do also agree with @donnie12 about seeing a urologist as previously having 40 sperm is a pretty incredible thing! Dr Ramsay is back working now but his wait times were 6 weeks and might even be longer now as he was off sick so may have a back log. If you do see him might be worth booking in advance and by the time the appointment comes round you should have all your test results.

Does your CCG have anything that says you can have 1 round of private IVF and still be eligible for NHS rounds? Could be worth considering that as a stop gap if your GP won't budge on the referral.

Thanks for the message! Come round to the fact that I'm going to have to do another round to give us the best chance. Having a month off and doing another one May. How are your stims going? Hope you're feeling ok x

@Sleeter0893 hoping all goes well for you tomorrow. Keeping everything crossed for you xx

@lemons44 you are another level with dates and thoughtfulness! I had to scroll up and figure out what tomorrow is but @Sleeter0893 i see it is T-Day. I am thinking of you too and will be waiting to hear how it goes. Ours is next Tuesday and everytime I think about it I feel physically sick. I hope you’re doing better than I am! Thinking of your OH too. Awful day to have to endure. @lemons44 where are you at with everything at the moment? X

@IslaO haha thanks. I remember you saying yours was end of April .. next Tuesday will hopefully come round quickly for you. Try and keep as busy as you can until then. We are all rooting for you.

I'm still having down reg at the minute. Starting stims on Friday. I won't relax until I know if our sperm will defrost ok or not, so to be honest I'm trying not to think about it all too much and just busy myself with work.

Hope everyone is doing ok.

@pomdownunder1 that's good that you're giving your body a rest. Hope you're feeling ok about the next round.